This Is My New Normal

The Tipping Point

2011-12-13T14:12:00.000-08:00

I haven't blogged lately...as you may have noticed. Hard to blog when the majority of the times that you actually feel like writing, you hesitate because it's generally not good news you'd like to share. M continues to deteriorate right before our eyes, and no one can yet tell me why that is. We await results from yet another genetic test for congenital disorders of glycosylation. I continue to be on high alert to make sure he doesn't get headed down the path of severe constipation again. He's currently *this close* to it, and to add to my ever-growing list of neuroses, is the new job of making sure he's ingesting the proper amount of miralax to make him have a bowel movement...making sure he gets his probiotic every day...making sure he gets his calcium supplement three times a day...making sure he gets the prescribed medicine to treat his endocrine disorder twice a day, etc. I'm tired, y'all. I'm doing a good job of going out with my girlfriends when I can, but like a junkie, those highs only last so long until you need another fix. And that need starts happening sooner and sooner than the last time. There is so much crying and yelling at our house, all of our nerves are completely frayed. Poor B has finally shown signs of being affected by it all as well lately. The poor kid can't seem to escape special needs and disruptive behaviors as one of his peers at his new preschool has recently been diagnosed with sensory processing disorder. This boy is constantly hurting his classmates by pushing them down, throwing things at them and knocking down anything they're playing with. I've tried so hard to arm B with the tools of empathy and understanding since I understand all too well what this child's mother must be feeling right now, but I am starting to suspect that since the boy's Mom is a part-time teacher at this school, that the sides have been taken, and my sweet kid's needs are likely being seen as inferior to the one disruptive child's. What's the right answer here? I've talked with the teacher and didn't feel like she seemed to think things were as bad as B says that they are. Anyhow...

I will say that a very high point did occur the second weekend in November. I had the amazing chance to meet two women I've known virtually for a very long time. One woman came here from Boston with her two boys. She and I were on a birth board on baby center.com when we were pregnant nine years ago. Autism hadn't entered either of our minds at that point, but we followed each other through toddlerhood to diagnosis and have been online friends ever since. The other came all the way from Australia with her husband and son. We've been on an autism parenting board with one another since our boys were about two years old. At that time, we remarked on how similar our kids were to one another and how they seemed very similarly affected by autism in their personalities and their immune system function. She's been right there with me, virtually holding my hand as we saw her boy make great gains in his abilities and my boy declined. I cherished both of these women before, and after having met them and their kids, know that they will be important parts of my life forever. We laughed like you wouldn't believe and told stories that we wouldn't tell to 99% of the rest of the world. They are amazing.

Back to M and our tipping point. He's gotten to the point of not being to go anywhere in public without a huge, aggressive meltdown. At 74 pounds, it is getting more and more difficult for me to control him, and that frightens me greatly. As thick as my skin has gotten through the years, I am frankly exhausted and quite angry with the embarrassment I feel from these meltdowns. B just began taking a karate class on Wednesday evenings at a place that is located in a busy strip mall in our small town. Occasionally the other half is able to come home from work so that I don't have to bring M with us (relief!), but most of the time he has to join us, and he is causing a huge scene inside the karate studio and outside which forces us to spend the rest of the time in the car. It's not fair to my four-year-old to not have his Mom in there watching him.

School is becoming a challenge again as well, and despite the amazing patience and kindness M's new teacher has shown, he has started to once again dig his heels in and resist going in some mornings. One such time about two weeks ago during terrible winds (a definite trigger for M) we were forced to stand outside in the cold and the wind to try and calm him down until he could go back into the classroom. His school is made up of all portable buildings, so there was no safe place for he, his aide and I to go. We tried to go to the cafeteria, but the p.e. class was taking place in there (neat, huh?), and we tried to go to the occupational therapy room, but it was locked. In order to get him out of the wind, we finally ended up in the entryway of the boys bathroom. Not the most ideal place, but the best we could do. We finally got him calmed down and asked him (with the help of his iPad as a communication device) if he felt better. He pressed 'yes.' I then asked if he wanted to go back to his classroom and he pressed 'no.' After a few more minutes I asked if he wanted to go home, and when he hit 'yes,' it was our 'ask and you shall receive' moment, and I took the poor guy home.

Today at pick up his aide informed me that at recess there were a group of kids sitting up against a wall outside staring at him and laughing. She (thankfully) told me that she put an immediate stop to it and told the playground monitor about what had happened. Apparently that Mom is also the parent of a child with autism, so she says that she will be on it and make sure it doesn't happen again. But that, combined with everything else makes me realize that something needs to change...and soon. M can't live like this, and we can't live like this. Please keep our family in your thoughts. We could use them!

Sorry to come in with a long-winded, depressing ramble, but there you have it.

No matter what, though, we know we are still fortunate in so many ways and we will do our best to remind ourselves of that fact this holiday season.

I hope that your families are happy and well and that you make it through the holidays with more smiles than tears. Here's to a New Year...just around the corner!

I'm A Nerd, That's Why

2011-09-12T08:30:00.000-07:00

I dropped a tired M off at school today. Mondays are the days the kids meet for a few minutes on the black top before starting school. A time when the principal talks about the values the kids should exhibit that week; a time to say the pledge with the whole school; a time when names are drawn for recognition of a kind gesture the week before.

M's name has never been called at one of these meetings. I doubt M's previous teacher ever submitted his name for one of the drawings, frankly, though in fairness I shouldn't say that affirmatively since I don't have proof.

M was in his classroom with his aide and I was walking back to my car as I heard the names and their room numbers called. And just as I was almost out of earshot I heard it. 'M, A-12!' And even better...all of the other names had elicited hand claps, but my boys' name elicited claps and a loud 'Woo!' from a boy in the crowd. I can think of one boy in particular who probably did that, and I'll be sure to pass along my own recognition to his Mommy to make her as proud as I felt for my little guy today. Yes, I am such a sentimental dork that it made me tear up with pride as I walked to my car. (and again when I repeated it to my other half--oy!)

Thanks, new teacher, for taking the time to recognize my little man and put his name in that drawing. The inclusiveness this woman has shown in just a few weeks of school are so huge and honestly took very little effort! I plan on sending her an email now to let her know how appreciative I am. Gotta keep the flow of appreciative recognition going!

It's The Little Things

2011-08-23T11:33:00.000-07:00

I took both boys to Whole Foods the other day at the busiest shopping time of the day. I knew this wasn't my best idea, but sometimes you have to get groceries and can't think about all the reasons why you know it isn't going to be a pleasant experience.

Let me preface this story by saying that M and I have been enjoying quite a few one on one shopping trips lately. He has become very good with my prompt of 'hands on the cart' as the way to keep track of him and not have him wander off when I am reading a label or otherwise preoccupied for a split second. Keeping his hands on the cart also helps him to not be tempted to do his contorted-faced, hopping, wild hand flapping dance that brings unwanted attention to us in a split second. I need to get through my shopping trip without feeling like I have a hundred eyes watching us from aisle to aisle. (and, yes, I am much better about tuning said eyes out, but let's be honest here...you always know they're there!)

Having both boys with me brings on challenges that I can't always figure out. Yes, my little B man is quite the talker and this may put a little more stress on M; but during this particular trip, B had been warned (heartily, I might add) that he best keep calm and quiet so as to not insight aforementioned wild hand flapping dance...or worse, the eight-year-old, appears-too-big-to-be-having-that-sort-of-public-tantrum tantrum.

B actually was doing a great job of staying chill while riding in the seat of the cart as M and I pushed him along, but apparently the crowds and overstimulation of the store were just too much for M that day, and so every five minutes or so, I found myself trying as calmly and discreetly as I could to redirect my eight-year-old from crying and pitching a fit. Yes, many people will jump ship in these situations--and we've done that before too--but I live 30 minutes from Whole Foods and I sure as hell was going to finish.

You know, as much as I accept that autism is a big part of my life, I am human and it is ridiculously frustrating to have your child acting out on what should be a simple grocery shopping trip. I had not asked much of M that day in terms of doing things that were out of his comfort zone, so I didn't think that a 30-minute grocery trip was out of the question for us that day.

As we stood in the pasta aisle trying to find gluten free lasagna noodles for the lasagna I'd promised B I would make (and the one I couldn't possibly have made with wheat noodles because I didn't want M to feel left out) the sweetest woman came toward me. It was clear she'd come down that aisle specifically to find us. With a gentle hand she reached out and touched my arm and said to me, 'You are doing such a good job. You are a good Mom.' My reaction was to say, 'Oh, you're going to make me cry!' (as she was about to cry by just saying those simple words to me) But then I thanked her profusely for her words and told her how much it meant to me that she took a moment to say that.

I have to say that I held my head much higher for the remainder of the shopping trip. I felt calmer in my heart and I put the smile back on my face.

I don't know if that woman had a child with special needs of her own or loved someone who did. But with a seemingly simple gesture, she turned around a bad moment and turned it into a positive one. It probably wasn't easy for her to come and say that to me either. You never know how people will react to things, even if they are meant to be kind. But she took a chance on me, and I am grateful that she did.

So if you see a Mom struggling a bit with a child--special needs or not--remind her that she is doing a good job and she is a good Mom. We could all use a little praise from time to time, and having it given at our lower points rewards us that much greater.

It's Hard To Blog When You Don't Have A Computer

2011-08-19T11:42:00.000-07:00

Ye ole laptop was struck by a gnarly worm or some such malicious thingamabob that I was unable to figure out and I was android phone-only for about six weeks. It sucked. What the heck did we do before the interwebs? Seriously?!
It's been a busy, busy summer 'round here, and frankly, I'm tired of leaving my house.
The creative juices are not quite flowing yet for me to jump back into full blog-irific hilarity, so I'll give you a brief M run-down:
-Confirmed diagnosis of hypoparathyroid disease (a calcium disorder)
-An ACTH stimulation test showed that he tested negative for Addison's Disease, though because he has some symptoms of the disorder (belly pain, low blood pressure, low cortisol and hypoparathyroid disease) we may test again in about a year.
-Didn't like the resident doctor we were seeing at UCSF or her inability to read a chart and see what we'd already been doing with no results, so I switched to Stanford. Score one for Mom's good judgment. New resident is a dream; attentive, enthusiastic, and--gasp--actually prescribing treatment that is delivering results! Calcium number is in the 'much better' range.
-M, unfortunately, has to endure weekly blood draws in order to constantly gauge calcium, phosphorous, and various other levels that my brain can't currently recall. Thank you, emla cream. My boy is brave little champ.
-Genetics appointment coming up on September 6th. We've done very basic genetic testing twice before (the last being over two years ago), but now that we have a bit more information on the endocrine front, they are going to do some more specific testing. Our endocrinologist has a strong hunch that he may be diagnosed with DiGeorge Syndrome, but we will see. It would make sense in many ways. If any of you reading this have experience with DiGeorge, I would very much like to connect with you!! Please leave a comment for me, if you would.

Enjoy the last few days of summer to those who haven't started school yet!

One of Those Things

2011-06-30T19:53:00.000-07:00

Today I had my yearly 'womanly' exam. Ahem. You ladies know just how exciting those are when they roll around each year. Anyhow, I really like the female doctor I have seen for the past three years, but having not gone through a pregnancy with her, she doesn't really remember much about me from June to June each year. We've talked the past couple of years about M and his disability and she has shown remarkable empathy and care toward me in return; offering up lots of encouragement and telling me that I was doing a great job. It never felt like b.s. She's a no-shit, genuine kinda gal from what I can read. But this year the kids didn't come up in the conversation, so the joggling of the ol' memory to remind her I had a child with special needs didn't naturally happen. And so, at the very end of my exam she asked me how old my kids were now. I replied that they are seven and four to which she responded, 'I feel like that's when life really starts getting a bit easier, don't you? At seven, they're becoming so much more self sufficient and easy to care for.'

I don't hold these types of comments from people against them. No, I simply try to tuck away that urge to let that little sound escape my mouth...the one that is mixed of sadness and a tinge of envy...and I chalk it up to another one of those things that make my new normal a little bit different from the rest of the world's. It really is okay. It just sometimes hurts a little more than I'd like to admit.

Big Montana Sky

2011-06-26T11:28:00.000-07:00

We recently returned from our yearly trek with my best friend's family to Flathead Lake in the northwestern part of Montana. It's a great trip that always ends too soon. (which is why the trip becomes longer every year)

The menfolk garner great pleasure from building the best fires in the pit each night, after amazing, home cooked, themed dinners, great bottles of wine...and, well, even more wine after that.

Both of our families dream of building homes on the lake one day. We've each joked about our stash of kitchen appliances and the errant piece of furniture that has, for now, been relegated to a storage area; labeled for years to come: 'Lake House.'

We rent a pontoon boat. We rent sea doos. We freeze our asses off on both, and don't really care because it's that much fun to ride on a massive lake even if you're wearing uggs, winter coats, gloves, hats and scarves.

We take a day trip to Glacier National Park and go for a walk in the freezing rain. Because it's THAT spectacular anyway.

We yell at our kids to not run on the dock. (okay, so that part may be more me than anyone else)

We take a whole seven days to get into the groove of traveling with children---a point we kvetch about at night with hopes it takes zero days when the kids are older.

We go to bed too late and wake up too early.

We make friends with the locals and mean it when we tell them we hope to see them next year.

A little brother laments the big brother he wished would play with him the way the two sisters do...and his Mom hopes that their frank discussions help him realize how special their bond is nonetheless.

We shop for things we don't need, and realize we forgot to pack things we did need.

We get to reunite with middle school friends we haven't seen in a decade--who live nowhere near the neighborhood, but because it's Montana, a five hour drive seems like nothing.

We have the good fortune of a couple of grown up-only nights out because a good friend back home has family in the area that is happy to babysit!

And two old friends who've changed leaps and bounds since their high school days, can talk openly about how different their parenting styles are--how different their children are, and yet still know that it is worth it to spend this invaluable time with each other summer after summer. And every once in awhile, they might just find themselves doubled over in laughter like they used to when their lives were a bit simpler, their stomachs a bit flatter, and their ability to stay up all night a bit more fine tuned. But make no mistake...they've still go 'it!'

This Is As Controversial As I'll Get

2011-05-17T11:14:00.000-07:00

I just have to get this off my chest and I am wondering how many of you out there feel the same as I do.

Clearly the vaccine issue has been at the heart of the what-causes-autism debate for quite a few years now. When friends (and strangers) ask my take on whether or not vaccines cause autism, my answer has remained the same since before M was officially diagnosed. That answer is that M showed signs of developmental delay from very early on, so in OUR case, I do not believe vaccinations were the sole cause of his autism. However, I do wish that I had spread them out those first years rather than following the recommended plan because I do believe they very well could have damaged his immune system (and thus his neurological system) along the way. M clearly has immune system deficiencies, and I think moderation is key for every single thing I put in his body especially when it comes to toxins. The fact that he's likely had the herpes virus actively wreaking havoc on his system for years with the inability to shed it naturally is proof enough for me that my particular child has difficulty when it comes to processing foreign viruses and bacteria. And please note that even though we have tried biomedical intervention, I am not nor have I ever been one to go singing its praise from the mountaintops in hopes that every other family with autism will also go down that path. In fact, I have always been very honest with others who ask in saying that we have actually not seen any results from biomedical intervention, but that some of the supplementing does resonate with me because of the previously mentioned immune issues as well as lab results that have shown clear deficiencies in several areas. I mention biomed here because of the point I'm about to get to...and the fact that naysayers seem to think those who believe vaxing causes autism are also quacks who shell out boatloads of money on biomedical interventions.

So to my point...I am sick and freaking tired of feeling the divide that has clearly made its way into the autism parent community. I am not a person who cares to or thinks that I even can get into an intelligent debate with those who have made it their mission to memorize every statistic or study Paul Offit and others are involved in. I am not interested in continuing to vilify Dr Andrew Wakefield or other scientists who believe vaccinations *may* have caused autistic enterocolitis (since that was Dr. Wakefield's claim, folks) or that they may damage some children. Frankly, I barely have enough energy to remember to punctuate the sentences within this blog post as my four-year-old screams the phrase 'poop in your underpants!' at the top of his lungs over and over.

What I do know, though, is that I have some very dear friends that I have met along the way of this autism journey and they believe that vaccinations were directly involved in the decline of their children into autism. I have listened to their heartfelt stories of typical development turning to seizures after a vaccination and thus a withdrawal from the rest of the world. I have heard about gut biopsies revealing crazy-ass viruses present in their children's system. And I believe them...because they are parents on a blind journey just like me wondering how this could have happened to their child and why it is happening to so many others around them.

I have stopped reading the blogs of some very outspoken proponents of the people-who-think-vaccines-cause-autism-are-stupid camp. Though these people may be bright and well educated, I no longer have patience to tolerate their penchant for talking down to those who believe differently. If you can speak calmly and kindly about your opinions, that is one thing. When it becomes clear that you think everyone who doesn't agree with you and 'science' is a fucking idiot, I'm out the door.

Stepping down now...

Blistless In California

2011-05-10T10:20:00.000-07:00

Blistless or B-listless

Definition:

When a Blogger becomes listless or apathetic about posting. It is also indicative of what will happen to the Blogger's mailing list.

Yes, it would appear that this affliction has struck Mama Deb. And my apologies, as the definition tells me that I have now likely passed on said affliction to you poor followers. It's been slowly making its way into my life over the past year, but has really taken hold over the past couple of months. I'm fairly certain my desire to not sound like a pathetic, skeptical, pessimistic, overly dramatic, loon may have a thing or two to do with it. (Though the ounce of optimistic, rational calm I have left keeps telling my other self that I'm strong enough, good enough, and doggone it, people like me!)

I had good intentions of telling you just how fabulous our recent trip to Hawaii was and then it all sort of went to shit starting the night we got home and I was wallowing in my own sorrows too much to tell you something that might make you think I had been happy for Six.Whole.Days. You know, cuz I got a rep to protect.

So I'll start with the crap and then end it on the high notes of our trip. Sound good?

We got home on a Thursday night around 11 pm. Naturally we were all sorts of screwed up on our body clocks, so it was tough to wind down and go to bed. B went with very little fight, but M started having this awful indigestion/burping the second we walked through our front door. Interestingly, this indigestion had started a couple of weeks prior, but had magically disappeared during our vacation. But we'll speculate more on that later...

I, being *slightly* anal retentive, was happy to stay up until 2 am unpacking and attempting to settle back into our home so that I would have less crap to look at when I awoke the next day. Staying up would prove to not be in my favor as M started to get really uncomfortable within minutes of my head finally hitting my pillow and succumbing to sleep. It finally became so bad for him that he was yelling and whining and I was worried that he would wake B up and then we'd really have ourselves some nighttime fun. So I ended up transferring B into bed with the other half (who slept soundly through all of this, bless him) and I took B's bed in the same room as M's. M was up until 6 am burping and farting. I had finally come to some sense and around 5 am gave him a pepcid ac, the only gas fighting medicine we had at the time. (which is odd because, well, we have a lot of gas around our house, folks!)

So when we awoke at 10 am the next day, I was all sorts of out of whack. That night was fine--not too much on the gas front--but Saturday, oh-dear-God, SATURDAY, it was so not good. The poor kid was clearly uncomfortable for much of the day and by that night he was pacing and screaming in pain. I'm talking the kind of screaming that could make a neighbor call the police and CPS on a family. It was terrible to see him like that and to not know what in the heck was causing it or what to do. And, you see, the thing about having a non-verbal autistic child is that you worry you are either a.) overreacting to every outburst or scream or, b.) not reacting enough. This is what happened to the other half and I that night. After M had paced for hours and the clock had reached 1 a.m., I (following previously mentioned option 'a') packed he and I a bag and got myself dressed in order to take him to the ER. The other half, however, (following option 'b') told me that I was 'a' and that the ER wouldn't be able to do anything to help him. I finally relented, hit the kid up with some more pepcid,, and we all fell into a restless sleep around 2:30 a.m. I'm going to fast-forward a bit to save you some more wordiness about discomfort, burping, and farting, so we'll skip ahead to Tuesday, a full three days after the peak of the indigestion. By this point, the other half had been gone for 24 hours on a business trip and I could no longer watch M in such a state. I took him to his doctor (after dropping B off at a friend's and packing yet another bag for a presumed trip to the ER) She agreed that I needed to bring him to the hospital for further testing. Six hours later, we left after x-rays, an IV, a slew of blood tests, a catheter, and a 'high' enema. (no, not just a 'low' enema, thank you very much) The poor kid was so backed up that that day even his bladder had ended up blocked and took an entire hour to drain via catheter despite not having peed since about 11 hours earlier. I'd like to note here that I am not a *complete* idiot and did realize that my child may have had some constipation issues. However, I had been trying to manage them and he was going a slight bit ever couple of days. If he hadn't gone at all for days I would have been more concerned about that than I was. Lesson learned.

Now here's the kicker, though: Two mornings later I awoke to find a voicemail on my phone that had been left the previous night at 12:30, while I slept. The message was from an ER nurse who said that they were sorry to alarm me, however, one of M's lab cultures had just come back showing bacteria in his blood and they really needed me to bring him in for reevaluation. AGH! I spoke to the nurse who mentioned the word 'staph,' and away we went again to the ER for another seven hour visit. It would turn out that we were one of the unlucky patients who had their lab sample contaminated by the naturally occurring staph flora we all have on the surface of our skin. BUT, because he had started limping and they were worried it could be sepsis in his joint, they did a pelvic and hip x-ray while we were there that lead them to find a wicked crazy amount of gas still in his gut that they then gave him two hours worth of IV fluids and some zofran to treat. Geez.

On top of this (and because you, no doubt, are enraptured by my tale of my child's gas, poo and other bodily goings-on) we discovered that he has a condition called hyperphosphatemia. Our doctor had asked that they test for this since M has also been hypocalcemic for years. (a thing that has just recently started to really concern me) So it would seem that these two out-of-whack tests combined point to a possible parathyroid dysfunction which we will now see an endocrinologist for in a couple of months. (Because that's how freaking long it takes to get into children's specialists, for those of y'all who aren't lucky enough to have to try to book these appointments) We will also revisit the genetics department since it's been two years since we last did that and the ER doctor feels we need to continue to look into possible metabolic disorders for which testing may now be available. (fingers crossed, though, that we don't find anything there...metabolic disorders can be s-c-a-r-y)

PHEW! Are you still there? Do I need to buy you a drink for still reading all this? (Because I will, you know)

So instead of making my fingers ache anymore from typing, or make your eyes strain anymore from reading, I will leave you with some cheery photos from our lovely trip to Hawaii where both boys were incredible champs BOTH legs of the flight, and where having my mother-in-law there to help us proved to be the best decision we could have made! I'm already ready to go back!

Because Facebook Doesn't Seem To Be The Right Audience...

2011-04-22T13:22:00.000-07:00

I needed to write down a couple of hilarious things that B has said over the past couple of weeks. The kid comes up with some downright doozies!

As I have mentioned before, the poor little guy has asked for a sister for eons now. It breaks my heart that he thinks a sister would be more likely to talk and play with him. He's also been saying to me that 'maybe when M is eight he will talk. Do eight-year-olds have autism, Mom?' But I digress. This is about the funny stuff, not the sad stuff.

A couple of weeks ago he asked the other half, again, if he could have a sister. Unfortunately, the other half's typical response is 'go ask your mother.' So in he trotted to me as I was working on my laptop to ask for a sister. When I told him it just wasn't that simple he said, 'Yes, it is! Just go to sister.com!' Ahhh...he is too much.

The next story I heard secondhand from the other half. A little background info: I, with the mouth only the daughter of a sailor could have, have been making great attempts to say other words beside the four-letter ones that generally are so satisfying to say. Instead of saying 'shit' I have started saying 'shish kabob.' And instead of exclaiming the word that starts with an 'f' and rhymes with 'duck,' I have been exclaiming (with great frequency, I now realize) 'Jay-sus!' Now, I was raised a fine Catholic girl. I realize taking the Lord's name in vain is frowned upon (even if I do put a slightly different inflection on that first syllable), but I figure that the Lord thinks it's better to exclaim his name than to curse, right? Well...apparently Mr. B was frustrated the other day and copied my exclamation. The other half looked at him and said, 'What did you say? That's not a nice thing for little boy's to go around yelling.' Without missing a beat, B looked at him and said, 'I said 'cheese sauce,' Dad!'
So now I'm going to be saying 'cheese sauce' instead of 'Jay-sus' when I'm frustrated.
This is particularly funny to the other half and I because I have always been told of a story of when he was a little boy and angrily yelled 'God!' in front of his Dad. When his Dad asked him to repeat what he'd said, he told him, 'I said 'Hod!' I guess the apple doesn't fall far from the tree, but B beats his Dad on creativity!

Autism: A Full Body Disorder

2011-04-22T11:34:00.000-07:00

I posted this on Hopeful Parents earlier this month and neglected to also post it here. Sorry I have been MIA. I will follow up with a verbal spewing of the not-so-fun events of the past several weeks. Of course, there were those six magical days in Hawaii scattered in there, too, and I promise to not forget the niceness of that!

We are in the midst of a burst of long awaited discovery. For the past three years I have watched my son regress before my eyes, knowing in my gut that something was causing it above and beyond the transition of a cross-country move. Unfortunately, it takes a lot of tests and the right doctor to help you get to that discovery; but I feel fortunate that one doctor's departure from a clinic was finally the door that opened for us to be able to see the founder of that clinic instead.

Our current developmental pediatrician has been described by people I have met as 'amazing,' 'brilliant,' and 'talented.' After only two appointments with her, I also gladly ascribe those terms to her. She listened intently and came up with three new avenues in which to look for culprits that have attacked my son's body. The first was a lyme disease challenge test. There is no definitive test for lyme, but the hope is that by treating a person as though they are infected with the lyme parasite, you have a better chance at stirring up any potential bugs in the body and then testing for them. Of the three components of the test, only one came back as a very big positive: the measurement of my son's natural killer cells. He has an extraordinarily low number of these important cells which can also be associated with chronic fatigue syndrome. M has also been hypocalcemic for three years despite supplementing with calcium. We have never chelated, the procedure you most often hear about in conjunction with hypocalcemia. The googling I have done on this condition worries me greatly, but this doctor feels that it is likely a direct effect of years of viruses taking their toll on his sytem. I can only hope that she is correct.

We also tested his blood titers for various viruses. His labwork came back showing that he actively has the herpes virus in his system. Many of us will have this virus at some point, but in kids with compromised immune systems, it's even more difficult to shed and can cause swelling on the brain. Our current course of action is a month-long (possibly longer) trial of the antiviral medicine, valtrex. While the side effects of this medicine (along with quite a few homeopathic supports to his immune system) are tough, we have seen a calmness and clarity that hasn't been there in quite some time. The poor boy is burpy and feverish at times, but in the midst of that, he answered my plea to 'please tell Mommy where it hurts' by fervently patting his head and his tummy repeatedly. I can't quite remember the last time he was able to answer me...even in a non-verbal way. We have also seen a HUGE decrease in his desire to chew on inappropriate items or go into our kitchen pantry or refrigerator. This had become a great source of stress for me, so I am extremely grateful for this change.

Lastly, we are going to see a more specialized pediatric neurologist in late July. A year ago a very basic MRI and EEG were performed to see if M had Landau Kleffner syndrome. The only thing that came out of the tests was a finding of a rare, right brain wave spike in his right frontal lobe. This spike is consistent in children with autism, and puts him at a higher risk of having seizures one day. Though that neurologist closed the book on the possibility of Landau Kleffner, my husband and I always felt suspicious that there was more to things than what the tests revealed. Our doctor has two other patients that present similarly to M in their late regression, fairly clean, initial MRIs and EEGs, and yet one did go on to see a specialist who in fact found that the boy WAS having sub-clinical seizures that had been harder to detect with a basic EEG. That boy is now following Landau Kleffner protocol of anti-seizure medication and prednisone and is apparently making awesome gains. Though the thought of putting M on anti-seizures meds is scary to me (I have a niece who has been treated-and, I believe, harmed-with quite a few of these medications) the thought of him potentially having seizures that have gone untreated for such a long time is even more frightening.

We've still got a long road ahead of us. Not only will he need immune support for some time to come (if not forever), but I still feel there may be more health discoveries to be made. I am hopeful that my little man will feel more alert, less uncomfortable, and be the happy-go-lucky boy I once knew again. I am not trying to 'cure' his autism, but I am going to do everything in my power to make sure his body is as healthy as it can be.

Hawaii

2011-03-23T15:04:00.000-07:00

I wanted to thank each of you for taking the time to share your advice, personal accounts, and encouragement that it would be okay for me to take a trip without M.

I sent many of your comments to the other half--I thought it was very important for him to read so many viewpoints that differed from his.

It has been decided that M will come with us. I know he will have an amazing time once we get there and am hoping for a happy surprise on the long flight over. The good news is that my wonderful mother-in-law will be coming with us to help with both boys. This may be even better than the original plan of just taking B with us as now we will have the opportunity to get away occasionally without either of the kids! I see fruity drinks with umbrellas and lots of time lounging by the pool in my future and I cannot wait! The weather has been awful here for weeks, so this trip can't come soon enough.

Thanks again. I so appreciate those who take time to read what I write, but even more so for those who are willing to share their opinions with me!

Decisions

2011-03-07T09:54:00.000-08:00

I posted the following at Hopeful Parents yesterday. Nothing fancy, but something I could really use your input on as we try to make this tough decision!

Instead of writing something poignant (ha!) or witty (right!), I could use a little help from you Hopeful Parents out there.

The other half is getting to go to Hawaii for business next month and we had planned on the boys and I meeting him at the end of his conference for a family vacation. We were fortunate to go to Hawaii just over a year ago as well. It was a lovely trip, aside from the awful-ness that was trying to fly home. M did pretty well, all in all, but in truth, he is a different child today than he was just 13 months ago.

I thought I could handle the 5 1/2 hour flight to Oahu by myself, but after flying back home to visit relatives last week, I absolutely know that I would not be able to do that with two young children successfully. M's sensory issues have multiplied greatly and his ability to not lash out at me (verbally and often with pinching and grabbing) has gone right out the window. The flights to and from our visit weren't the worst flights we've ever taken, but they were also far from the best, and they most definitely filled me with more consistent stress because I was aware that he was on the verge of a (loud) tantrum at almost every moment of the flight.

My amazing mother-in-law has offered to fly with us to Hawaii. This would be wonderful on several accounts. Not only would she be an extra set of hands at the airport and on the plane (allowing me to actually get out of my seat to use the bathroom, which you know is going to need to happen on a flight that long!), she would allow the other half and I to take our own time, free of the kids, if we wanted it.

But here's where I need your help...she has also offered to fly to our home in California to stay with M while the other half, my typical four-year-old, and I go to Hawaii by ourselves. The other half won't hear of it, but I have to admit that I think it is a really nice idea. First off, we have two other domestic trips planned this year that M will absolutely be included in. And second, doesn't B, my typically developing child, deserve a vacation where he can go places we normally wouldn't be able to go without the constant worry that it could end at any moment based on his brother's needs? And as guilty as it makes me feel to admit it, I could use a 'normal' vacation as well. It would be great to eat out at a restaurant, leisurely, without worrying that M will yell, or worse, try to grab food off of another diner's plate. (yep, that happened to us the last time we went to Hawaii)

It is hard to imagine how looking at photos after a trip like this--with one very important family member missing--will make us feel. Just thinking about it certainly stirs up all sorts of emotions in me. And I know that M adores the sunshine and being at a hotel. But would I be the worst parent in the world if I actually did take my mother-in-law up on her offer? Have YOU ever made this sort of decision? I would love to hear your personal thoughts and stories.

Insight

2011-03-02T19:12:00.000-08:00

I have a group of Moms I meet for a quick breakfast, two to three times each week. We formed our bond through our children, all who have special needs. Our children vary in their diagnoses, which is actually way more beneficial than I would have been able to predict when we started our breakfasts two years ago. One friend has an adult daughter, almost 22 years old, who has non-verbal learning disorder. A is a lovely, outgoing and talkative girl. Funny since the label she has been given would imply that she didn't speak. She often (without realizing it) offers me exceptionally poignant insight into the world and minds of people with special needs. This morning she said something that put a little pang in my heart.

As she was relaying a story of her early years of elementary school, she mentioned a girl who was in her special education class that had autism. This girl would, as so many people on the spectrum do, flee the classroom-seemingly for no reason-and retreat to the playground swings. A told me that the teacher was new to teaching children with special needs and could not understand this girl's behavior. At seven, A was able to tell her that the girl just felt overwhelmed and needed to calm herself. But that wasn't what struck me so deeply. She went on to say that she told the teacher that kids like this girl just needed people to be nice to them; to try and encourage them rather than discipline them. Because when you try to discipline her, she gets scared. There...those last three words. That's the part that stabbed me in the chest for a moment. You see, I struggle greatly with the line between encouraging M and disciplining or reacting negatively to him . And I feel like as his sensory troubles increasingly take over his ability to engage with the world around him, the more my likeliness for 'disciplining' him becomes.

Over the past month, M has started going into our food pantry and our refrigerator and freezer. He does this at least 20 times a day whether I am in the room with him or not; whether I have just scolded him for doing it two minutes earlier or not; whether he has just eaten something...or not. His favorite targeted items are plastic tubs (like cream cheese or yogurt), of which he will gnaw on the edges of the lids. He also really likes to grab the boxes of broth and soups in the pantry and squeeze them or chew on them. The 'normal' response to this behavior would be to ask a parent 'do you have other appropriate items for him to chew on?' And the answer to that would be, 'more things than you could possibly imagine!' I would estimate that over the past three or four years I have probably spent a few thousand dollars on 'chewies,' or replacing clothing or other ill-fated items that met M's mouth. He will generally find a chewy of choice and stick with it for a few months and then get bored with it and need to find something else. For those not in the know, many people with oral needs such as this, use therapeutic chew tubes, 'chewlery,' or vibrating z-vibes, etc. These items are not cheap, especially when they tell you that your child shouldn't be able to chew through the item, but he does! I can't even tell you how many of those chew tubes we have chewed through at around $6-7 a pop. And as much as you hate feeling like your child is a dog given items to occupy his chewing desires, the alternative is worse. I've mentioned it here before, but our book and dvd collections are a nightmare; chewed on cases and toothmark-filled book bindings. It's hard to not get a little crazy over the fact that your child can't be trusted to have a library card for school because you'll end up paying for each book he checks out. (and you have to hide any book your younger son checks out) It's hard to tell your younger, typical child that you're really sorry that his favorite book just got ruined. And it's hard to think that you will likely not ever be able to have those 'nice things' you sort of imagined you'd one day be able to have when your children got older. Shallow, absolutely. But that's sometimes how I feel.

Back to what A said about discipline making someone afraid, and I use the word 'discipline' simply because A used it when describing what she saw as a child...It's whatever word you want to ascribe to the reaction you have when a child who may or may not have the cognitive ability to understand his actions does something that you believe shouldn't be done. I struggle greatly with controlling my emotional reactions to things I think aren't right, and in this world of autism, there are a lot of things that aren't right to me that I probably need to let go of and relax on a bit. I'm totally a libra; a strong sense of right and wrong and a sensitivity to injustice. But with autism, what I perceive as wrong, my child doesn't. In fact, beyond perceptions, his body simply has needs to fulfill that are completely out of my realm of understanding and must be met in order for him to attempt functioning in my world. It's an incredibly difficult concept to try and grasp for anyone, even if you're the parent! But it's getting to that point of accepting what is out of my realm of feeling for myself that has to occur if I am to find some semblance of peace in my new normal. And because if my own child can't feel safe and unafraid with me then how will he ever feel safe and unafraid with anyone else?

And for the record, M opened the fridge three times and the freezer once during the time it took me type this. Fridge lock and lever handle cover are on order from Amazon. Thank goodness for the prime membership..they'll be here in two days. I'm looking forward to moving on from this habit...

Dogless

2011-02-12T09:07:00.000-08:00

For the first time in 17 years, I do not have a dog following me around the house. Last night I went to bed and kept looking at the dog pillow on the floor, expecting to see a furry mass snoring happily, but none was there. I didn't have to bargain with the other half to see who would be in charge of letting the dogs out one last time before bed. At dinner, there was no one for me to shoo away from begging at my children's feet; and no one to snatch up the crumbs that still lay unswept on the floor this morning as I type.

Just 15 days after saying goodbye to Sydney, I realized it was also time to say goodbye to Hank. How these two animals that were born about three years apart were able to time their endings within two weeks of each other is the stuff I can only philosophize about. It was clear that Hank was sad without his longtime companion, but how was it that his cancer came to be known only two weeks before hers caused her demise?

Unlike Syd, Hank had gotten to the place where no food tasted good to him or could be tolerated. Sydney had gulped down her last supper of bacon and eggs, and greedily snatched a chocolate chip cookie bar from my purse (one that had grown stale after being uneaten by B) in the parking lot of the vet's office just before I took her inside. While Hank, who had only been eating bits of roasted chicken for days, wouldn't even attempt the popcorn I made him; the popcorn he'd have pulled out all the stops to steal from us only weeks earlier.

I took Hank for a walk behind our house--he chose to amble up the hill rather than taking the stairs, which seemed an odd choice--and after saying goodbye to the rest of the family, I took him to the coastal trail to lift his shaky leg on as many plants as he wanted to. It was the best he's ever walked on leash for me, and he almost tricked me into thinking I had made the wrong choice and that maybe he could stay with us for a bit longer. But the seizures I'd witnessed two nights earlier, and the bile I had been cleaning up constantly for two weeks allowed my heart to know that it really was the right time. Not too early, and not too late.

So now I am dogless. Though I know I have needed some relief of stress in my life, I am at heart a dog person. I need a dog's companionship and security. I am feeling a bit lost today, though I know that will ease with the days. The other half wants to take a break from dogs for a bit. I felt a bit angry that he reminded me of that as I cried last night. I am hopeful that the most amazing dog we could ever hope for will somehow find us. It's happened to me before when I was fostering, but those dogs were always meant to move onto someone else.

In the meantime, I will fondly remember the gifts and annoyances these wonderful spirits bestowed upon me and my family for so long. I will miss you, 'Stupid Hank.' I hope eating poop isn't frowned upon in heaven. Maybe it's even so great as to have poo-flavored dog biscuits for you? Now that would be the perfect Hank-heaven indeed!

Autism & Emotion

2011-02-06T11:24:00.000-08:00

Today I'm contributing this piece over at Hopeful Parents:

We recently lost a beloved pet to cancer. She had been with us for fifteen years and before M's big regression three years ago, had an other-worldly bond with our little man that she tried as hard as she could to maintain even when his seeming indifference to her (and most everything else) seeped into their relationship. M is non-verbal, but I am certain that the words from a thousand languages float intelligently through that beautiful brain of his...but if only we could hear them and know that he felt the same emotions we feel, well, then I suppose I wouldn't be here writing this particular post.

Over the past nine days since we said goodbye to our dog, I've wondered what my son thinks about her missing presence in our home. And trust me, it is a gaping hole. This dog was a cattle dog; bossy and stubborn, loyal and loving. She always made you know she was there, and I've done many double takes since she died because I was certain she was still there, right under my feet, about to knock me down.

It's really bothered me-saddened me-to think that M either feels no emotion toward her passing or, worse, that he feels something as great as the rest of us and it is trapped inside his body, twisting and turning and trying to come out, but not knowing how to.

We've talked quite openly about it all with M and his younger brother. Our dog deteriorated before our eyes over the past several months in so many ways that it wasn't something you could miss even if you tried. So why has there been no inkling of sadness from our boy?

M shows emotions in many ways, so I know that the capability is most certainly there. He let me know that his feelings were hurt when I yelled at him for smooshing to smithereens a sleeve of crackers recently. He cried as if to tell me, 'I can't help that I did that!' He lets us know he is happy to see us when we return from those rare Mom and Dad-only outings by jumping up and down, running away from us with a huge grin on his face.

The real kick in the pants is that we will also have to say goodbye to our remaining thirteen-year-old dog in the coming days or weeks.

Less than two weeks before we said goodbye to the first dog, we learned that the second also had an aggressive type of cancer, this one with an outlook of generally 20-60 days of life remaining after diagnosis. Again, we have told the kids that our friend is sick and we should be especially kind toward him right now. Is M processing any of this?

I know it is almost cliche to bring up the 'mysteries of autism,' but this one truly mystifies me. Some aspects of my son I am able to accept as being just as they are, but this one makes me want to dig deeper to truly understand.

And yet, I am also struck by the thought that perhaps the answer to what my son is feeling is so much more evolved than something my less-complex brain is able to conceive. What if his reaction to his pet's death is a higher form of acceptance than the tears of my grief could ever achieve? What if his method of coping is on a totally different plane from anything we ordinary humans are able to accomplish? I suppose that until one of those languages emerges from his brain in the form of words I am able to comprehend, I will continue to wonder...

Goodbye, Old Friend

2011-01-27T15:42:00.000-08:00

‎"You think dogs will not be in heaven? I tell you, they will be there long before any of us."
-Robert Louis Stevenson

The above photo is of our very special cattle dog mix, Sydney, who I spoke of almost exactly two years ago here. She was in her prime, around three years old, and newly transplanted from the Texas plains to the incredible beauty of northern California. She'd make that journey with us back and forth across the same four states twice more, and travel to many cities in between.

This was our girl today, (at the ripe age of sixteen), enjoying one last trip to take in California's beauty, though in a much quieter manner. Instead of hiking with us across difficult terrain as she did in the photo above, this time my friend was given her own set of wheels: her beloved boys' radio flyer wagon.

It all began with just she and I back in 1996. I, a senior in college who was feeling more than a little bit lost after losing my previous dog to a tragic accident; and she, a rescue who had been graciously saved by a woman who'd found her chasing cattle on a ranch near her home, and taken good care of her while waiting a month for a spot to open at the local no-kill shelter. Eight years later we'd find the buckshot that remained inside her...evidence that a stray, cow-chasing dog in rural Oklahoma is not exactly a welcomed guest.

Today, it ended. Again, just she and I. We quietly rolled across the dunes and walked a tiny portion of the beach, (her legs would no longer allow anything more), and then two old friends sat quietly until it was time to go to the vet's office, watching the waves crash and retreat. Crash and retreat...

I whispered in her ear over and over and over again, until I was sure she could no longer hear, 'I'm here. I'm here. I love you. Thank you.'

My heart is a tiny bit broken. Fifteen years is a long time to share your life with a pet. We fought like sisters and consoled each other like best friends. She was the smartest dog I have ever known and I hope that even in my worst pet-owner days that I still did somewhat right by this dog who loyally stood by my family for so long.

You're an angel now, Syd. We will miss you always.

Hopeful Parent-ku

2011-01-06T14:28:00.000-08:00

I'm over at Hopeful Parents today with the following entry. Be sure to click your way over to their site and sit down a spell!

Alright, let's get real here for a minute. I have admittedly been a wee bit lax on regular blogging, which in turn means a laxness here at Hopeful Parents. As I've said in my own blog, it's not that I don't have things to say, it's just that I realized that my state of mind recently is such that all my blog posts end up sounding whiny and bitchy. I'm not a smoke and mirrors, everything-is-just peachy-when-really-it's-not kind of girl--quite the opposite--but it still doesn't feel right to me to look back on my reflections and to only read negativity. I very briefly tried to hold myself to a weekly entry called 'thankful Sundays.' My family does not attend church, so reflecting on what I was thankful for on a day traditionally held for church-going, I thought was good practice. Yep...didn't last very long. The gripes took over way too often and made me feel false in my attempts to try and come up with something cheery. (yes, this is all probably good information for a therapist or the zen teacher I probably need to start seeing)

So with that, I decided that today I wasn't going to bitch and whine. No, sir, we're going to have a little fun here today, and I do hope that you'll join me!

Back when I lived on the mother ship, (that's the great state of Texas for those of you who don't know), I was a member of a lovely virtual community of mothers. One such mother has her own fabulous blog called 'Haiku of the Day,' which I highly recommend you read. Kari's pretty damned funny, and her haikus are, too, even though life is certainly not always a bowl of cherries for her either. It's quite therapeutic to come up with your own haiku when things are seeming a bit shitty in your life, so I think today is a perfect time to come up with a few of my own. They don't always have to be funny, and they don't always have to be sad; they're quick expressions of your feelings or current situation. I find that leaving them as they are on my first take is best. I honestly don't ever remember revising a haiku upon second reading as you might with other poetry styles. Here's my quick take on a few haikus for today. Share some of yours in the comments section!

Shower, elusive

My hair's still in a clip

Oh, wait, that's the dog!

Diapers at seven

Not quite what I imagined

No pee on the floor!

Little brother big

While bigger brother little

Confuses me some

Parenting is hard

Nobody warned me of this

Where's my manual?

Winning Numbers

2011-01-02T10:37:00.000-08:00

I tell people that B, my youngest who just turned four years old, is my lottery win. As with all things that attach themselves to a mother's sense of guilt, I do feel the need to qualify this statement by saying that this does not in any way lessen my love for M. M is his own beautiful being, but if I said that I did not have hopes that his (and my) life would go differently, I would be lying.

Now that that's out of the way, onto those winning numbers!

I don't talk about him enough here and I realize that I should. For he is my little beam of light, as frustrating as he-like many preschoolers-can certainly be.

I naturally had to 'guide' him on not chucking the sand he was digging into the wind, whereby it would then end up in his brother's and the dog's eyes.

B is smart. He has his father's quickness and my gift for gab--combined traits that both amaze and annoy me. But above all else, he is kind and thoughtful. He can seemingly Eddie Haskell you, but it's genuine--really and truly genuine. He knows just the right moment to come over and rub my back or plant a huge kiss on me and tell me, 'You're the most beautiful Mom ever,' or 'I love your heart.' (my personal favorite)

He didn't ask to be brought into a family where special needs loom over us day in and day out. I realize that he knows no different, but I do believe it will serve him well in later years. I'm sure most of us parents thrown into this mayhem believe this of our typical children.

One thing that has increasingly been difficult for me to hear from my little man is his desire to have 'a three year old sister one day.' I have heard this statement no less than five times a week for the past several months. I think he believes that a sister might talk and play with him; might not pinch and grab his arms when he tried to interact or did what little brothers are supposed to do and took away his big brother's toy. (That's a bit more tricky when said toy is an iPad, the only 'toy' in which big brother shows ANY interest, day in and day out.) Regardless, he tries so hard with his big brother, trying to please him by bringing him his favorite 'chewie' when he's out of sorts, or mimicking our words to try and get him to perform self-help skills or the like, when he says things like 'Use your fork, M!' He does his very best to include a boy who seems to not want it. And for that, I am greatly appreciative.

I desperately wish I could give him a more typical playmate, but if I may be honest here, I am petrified of trying to get pregnant again and have definitely closed my mind to that possibility. I don't believe the other half thinks it would be a bad thing to attempt, but as the one who would carry the baby, I know that my current stress level would be a detriment to creating a healthy being. And then, of course, there is that genetics thing. See? This is why I call B my lottery win. And no one wins the lottery twice...

But back to my amazing boy. Because this is my diary and I want to read it in later years and remember the wonder of him from this time--I need to do a better job of reminding myself of all those funny things he says and does. Maybe I should create a running list on an entry I don't publish but once a year to memorialize those seemingly small phrases and gestures that he performs that tug at my heart or make me need to stifle a laugh in order to be the grown up I'm supposed to be. For example, and I realize there are some readers who won't find this in the least bit funny, the other day (after having had an amazing birthday weekend complete with a visit from an out of town grandma and two cousins) he was feeling a bit pouty and clearly needed to try and hurt me. So he looked at me with one eyebrow furrowed as much as he could, and a hand on his hips to say, 'I had a bad fucking birthday.'
Oh, my stars, I could not believe he said that! I turned around for a split second to get it together and then turned back to him to appropriately reprimand him for saying such a thing. I suppose this is one of those situations where the phrase 'Do as I say, not as I do' comes in handy? Hopefully we won't hear anymore f-bombs come out of his beautiful little mouth until he's an adult :)

B has a great love for animals. Until July of 2009, we had five pets: three dogs and two cats. A young woman in college and shortly thereafter does not consider the fact that adopting five animals in a relatively short time period means that all five will become senior citizens around the same time. Nor does she consider that there may be any extenuating circumstances in her life that may make caring for five aging pets that much more challenging. Nonetheless, I do hope (and believe) my love for animals has somehow rubbed off on my youngest child. When we were close to losing the first of our five pets, our beloved Daisy dog, B would sit for what seemed a long time in the world of a then-two-year-old, petting her and loving on her and saying, 'Aww, poor girl,' as she laid quietly beside him, the cancer growing within her. And though we'd talked very openly about Daisy's death and where we believed she went afterward, I was unable to tell him that I had made the decision last March to have one of our cats (Jade, aged 15 years) put to sleep because, despite not finding any medical reasons why, our least social pet was peeing so badly around our home that the boys could no longer sleep in their bedroom until we replaced the carpet. He asked many times where Jade had gone--she'd had a habit of sneaking out from time to time and being gone for days on end despite being an indoor cat--and finally about six months after the fact, I *may* have told him in passing that she was in heaven. Though I don't believe he had much of a relationship with Jade either, as recently as two weeks ago I overheard him telling an elf at a children's Christmas show (of all people!) that he had a cat once, named Jader, and she was in heaven. Oh, this beautiful child who never forgets a single thing! He amazes me!
And now, our oldest dog, Sydney, is very, very close to our needing to say goodbye. At 16, she, too, has cancer that has spread to her bones. And like with Daisy, I am open and honest with B about her. Not because I am one of those Moms who gives her young children a little too much information, but because I know that he has that 'thing' within him to make heads or tails of it all when it comes to beloved pets.

So to my boy--the one who screamed for the first 18 months of his life and scared me into thinking that he'd be that way forever--you are my sunshine. Really and truly. My life is immeasurably better each and every day because of you.

It's Like This. Or not...

2010-12-22T11:46:00.000-08:00

Do most of us have a vision or a dream of what our perfect lives should look like, but an inability to attain it? Is it idealistic or selfish to wish for a different you than the one you live with each and every day? I am struggling to live in the now...I suppose I have been stuck in that rut for some time. I have a vision and I just don't know how to get there. Let me rephrase that. I don't know if I'm supposed to get there. When you get married--and especially when you have children--you take on a new identity; a we, not just me, unit that must be considered as a whole. But the 'we' can't entirely work properly if the 'me's' inside of it aren't in tune, right?

Here's my vision (or at least an aerial view of it):

1. A happy, harmonious family unit. Yes, there will still be the normal bickering, but a little less of the tension we have looming over us now would be nice.

2. Music all around us: I always envisioned having a little pick up band that would come to my home once a week or so and play music and drink wine. M's often quite deeply plugged into music-especially when it is live--and I have always thought having a sort of hippie, extended, musical family would benefit him greatly. Last time that happened was on our front porch in Austin, 2007. That's over three years ago for those of you who have killed enough brain cells (like me) to not be able to do basic math :) In other words: too damned long ago. Oh, you should have seen M at that party! He stood an arm's length from the electric guitar player; mesmerized and calm. It was beautiful.

3. A home that we love and want to live in for the rest of our lives (or at least feel like we'd want to). We move around. A lot. Our last home (same one that had that magically musical front porch!) was pretty close to perfect. We had four, fully-fenced acres to safely play on with the most beautiful trees I have ever seen on a residential plot in Central Texas. The deer had babies in our yard each Spring, and from my office window I welcomed back the monogamous pair of woodpeckers as they returned year after year to the same oak tree to kick out the wintering house wrens and have their babies. We watched our creek ebb and flow with the rains, saved a snake once from some garden twine, and took tractor rides down the block to feed the neighborhood goats. I miss having that space!

4. More quiet moments to reflect and write. I have fleeting moments of profound thoughts running through my head. Those are few and far between these days, and other less appreciated moments zap them from my thoughts almost as soon as they've appeared. I know I have a voice to share. I know I have things to put to paper (or blog as it were) that could very well help me process this life and get one step closer to my own version of nirvana, but it's all happening so fiercely and so quickly that I have no time to let it simmer and soak.
Like now, for instance...I've gotten up no less than five times to attend to everyone else's needs. This is life as a parent, I realize. And M is now about four feet from me with his ipad blaring another Disney movie, so I've gotten up a sixth time to turn down the volume. The flow of thoughts that were in my head before I started this post have withered and I am left once again feeling like I didn't quite express what I wanted to, and I certainly have no idea how to conclude it.

I am not living the life I know I am capable of living. This much I know is true. And so the days keep coming and going, no more fulfilled than the last. And my children suffer for it. And I suffer for it. And I must figure out a way to find that music and make it a part of our daily lives.

Have You Seen This?

2010-12-11T09:40:00.000-08:00

Truly amazing and beautiful...

Is There A Doctor In The House?

2010-12-08T10:15:00.003-08:00

I posted the following at Hopeful Parents. Be sure to stop by their site for the Pampered Chef giveaway!

M has pink eye. How we had managed to go for over seven years unscathed by this lovely bacteria, I am not sure. Actually, I think we might be fairly average in this regard, (I've never had it in my 37), but my pediatrician's shock over it made me wonder if it was that unusual to have not experienced such joy as of yet. His chuckle-y reaction got me thinking about how we are perceived by the doctors we visit who aren't traditionally the ones who see kids on the spectrum or with other special needs very often. Do they assume that with all the other craziness we seem to embody that our kids are likely to get every ailment under the sun compounded with their unfortunate tempting of the odds to have their chosen disability in the first place?

We live in a smallish town that requires one to drive over a small mountain (or a large hill--whichever optimistic/pessimistic approach you'd like to apply to this road that winds up and then down) if you want to go to any of the big box stores. And if you want to go to really good doctors...well, the word on the streets is that you should drive over the hill for that, too.

We do drive over the hill for most of our doctors, and even for a developmental pediatrician that also assists us with our biomedical intervention. However, I also wanted an in-network pediatrician nearby for those times when my kids are sick and none of us has the desire to sit in a car 30-minutes each way; not to mention a doctor who only charges us a standard co-pay rather than the full amount of a visit up front that we must then wait to get a meager reimbursement for...oh, the expenses we hopeful parents must endure!

This was the doctor we saw yesterday. He truly is a lovely man; a youngish doctor who is genuinely trying to set up an old-school, small town practice where he gets to know his patients a bit better than in the bigger towns. There are plenty of kids in our town with disabilities, but I get a strong sense he doesn't see many of them on a regular basis; and the ones he does see, I suspect are a bit easier going about doctor visits than poor M is. Whenever we go to see him (which is rarely, thank goodness) he sort of looks at me like 'how do you want me to go about doing this?' In fact, for the required school health check last year, he literally did say to me, 'What of these required items do you think I can check?' I suppose I always respect a person who is willing to admit when they don't know something, but I am so frazzled by the time we are five minutes into most appointments that I haven't even got an idea of why we are there or what my name is.

We got out relatively unscathed yesterday. I only had to wrestle M's very, very strong 62 pounds during an under-the-arm temperature scan and when the doctor was checking his ears and nose. But the times when we have had to do strep test swabs...fuggedaboutit. On those occasions I leave sweat-colored and exasperated; unnecessarily apologetic and embarrassed. I know that the doctor likely takes pity on me more than he does M. He practically said so yesterday with his comment that he felt bad for me because he knew this was going to get even more difficult as M gets bigger and stronger. It left me with a sort of unease because I am in a transitional phase with this hopeful parenting thing; a phase where I am trying my hardest to stop feeling sorry for myself and projecting that sorrow onto other people. I realize that until I can allow that transition to fully happen people-doctors included-are going to continue to put their focus on me and not necessarily as much on M.

As M's Mom and main caregiver and advocate, I have to continue to seek out the best doctors to treat and understand my son. But above and beyond that, I have to find doctors that care about him and want to get to know him. These are the gems we have to seek out to become members of our children's very important teams.

Grab A Tissue

2010-12-04T09:29:00.000-08:00

This is a little corny, but damn if it doesn't sum this journey up really well. Sigh...

Where's Waldo? I Mean, Deb

2010-12-02T11:16:00.000-08:00

Man, I look at my site meter and see that people are still stopping by here to check in despite nearly a month of silence. Thanks for a.) caring, b.) wondering what this wack job is up to now, and/or c.) being loyal readers of this chaos.

As my friend, J, said to me yesterday, 'I know you've had plenty to blog about this past month!' Yes, indeed, I could certainly fill more pages with blah, blah, blah...general suckitude...blah, blah, blah; but as I've said before, I hate that there are long stretches where this blog becomes nothing more than a bitch fest.

I will say this: not having in-home ABA therapy for the last seven weeks has been awful. Really and truly awful. M is unhappy. I am unhappy. Everyone is unhappy. There are sleep issues with both boys that are compounding the unhappiness. Negative behaviors have returned to M's world, (and then some), and my mental state just doesn't seem to be fully in check to deal with it. I'm working on that part, but I sometimes feel like I'm walking around like a bleary-eyed drunk, which is ironic since I've actually been drinking a lot less the past couple of months.

When I was a child--starting around age six and lasting probably until I was 13--I had a recurring dream whenever I had a high fever. In the dream, I was in a white room with no dimensions to it. I was standing there alone and all of a sudden tires began being thrown at me. At first the tires were quite small and thrown gently to me, (I had to catch each one), but they would gradually get larger and thrown at a faster pace. Inevitably, when I got to the point where there was no way I was going to catch the tire, the dream would switch to a playground. I was on one of those animals atop a large spring coil. A boy was sitting on one next to me staring. Never blinking. He was going back and forth very fast and then got slower...and slower...and slower...and then I would wake up. I know, I know. Totally messed up, right? Probably should have seen a therapist about that one way back when. But the reason I bring this past dream up is because I'm feeling like I'm in that room with all those tires right now and I'm about to drop them...and then what? What really happens when I can no longer catch all those damned tires?

I know that there are a lot of people in this world that have lives far more stressful than mine. I know how fortunate I am in so many ways. But when tires are being thrown at you from all directions, sometimes it's really hard to appreciate the goodness. I suppose that's a New Year's resolution in the works. Wouldn't it be nice if there were no need for resolutions?

Wanna Hear A Funny Story?

2010-11-08T11:07:00.000-08:00

Our insurance company (ha! I made a typo at first and wrote 'sinsurance') wanted us to have a conference call with them this morning. They gathered some big wigs in the room like their clinical social worker in charge of the 'care' management team, a senior care manager, and a doctor from the Bay Area who is a board certified child psychiatrist and director of behavioral health. The purpose of the call was for them to give us suggestions that we may not have already come up with to better our child's health. (HAHAHAHAHAHAHAHA)

So we discuss the speech and occupational therapy we're doing privately and at school. Child psych agrees this is a good thing. (gee, thanks) Child psych then says that he noticed that in the last seven years we have not yet seen a child psychiatrist. I had been concerned that this man would 'advise' us to seek medication for M, so I asked him straight out if that was his point. He responded by saying that he didn't necessarily agree medication was always the right thing and couldn't comment specifically on that since he hadn't met our son. Good man for saying that because I'd a pulled out a can of whoop ass if he had! But he said that a psychiatrist would advise us on other behavioral interventions.

Wha?? Stop right there, doc. So I said to him (in my best lawyer-esque, leading question, sort of way) 'exactly what other behavioral interventions could you mean??' I'll give you one guess what he said.......

Wait for it....

Applied Behavioral Analysis! The very reason we were having the freaking call! Because the stupid-ass insurance company believes it to simply be educational and not worth of covering. Anyone else find this ever-so-ironic?

They took it one fabulous step beyond that and let us know that they'd been awesome enough to do some research for me and found a provider who would charge us a lot less than our current provider had. Of course, this would come from our own pockets, but aren't they so great to have done all that legwork and made all those phone calls for little-old-us? Wow, I am so honored.

I made a point to remind them that the only reason we'd gone with the provider we had was because at the time they were the only ones in-network, which was their requirement. I also made a point of reminding them that the reason our therapist was more expensive than most therapists was because they required her to be of a higher accreditation. Funny, no one said a word after that.

We let them know that we'd be starting the tedious appeal process immediately knowing full well they're going to deny us at first.

What a joke. What a freaking waste of our time. $#@(**!!

The Fight

2010-11-07T15:39:00.001-08:00

Sorry for the delay in updating everyone on our crazy ABA/insurance situation. The following was just posted over at Hopeful Parents:

As a parent of a child with autism, sometimes I really feel the weight on our generation to lay the groundwork for future families of autistics. I accept that responsibility and do what I am capable of doing to mend the gaping hole that lies between our children's needs and rights and what our society actually offers them.

But no matter how responsible I feel, I can't help but have those moments (many, in fact) where I allow myself a tiny pity party (often with wine/whine) because I just get tired of fighting. For every.little.thing.

I find myself sometimes resenting those around me who have it so easy, and have to remind myself frequently that a.) everyone carries their own burdens whether I know it or not, and b.) maybe there is a teensy bit of truth in the idea that somebody in the universe thought I might be a little better suited to carry this load than someone else. (insert maniacal laugh here)

For the past six months my family has had a huge weight lifted from our shoulders. A calm like we hadn't known in several years. We were finally able to have ABA (applied behavioral analysis) covered by our insurance company. For those of you out there that have self-insured insurance plans, you know that this is next to impossible to achieve. It took me over two years to do it, and I was ecstatic when I learned that we would be authorized for 25 hours/week at a co-pay of only $15/day.

That calm came to a screeching halt two weeks ago as I was informed by a 'care manager' from our insurance company that the past six months had all been a big oopsie and were authorized and paid for in error. Despite having a piece of paper in my possession that was the most recent 60-day authorization good through the end of November, I was told that no claims would be paid past the day of the phone call. Apparently in the insurance world, documents I would consider binding don't have to be if the insurance company decides the rules need to be changed. This is all most certainly unethical, and I can't help but wonder if it is illegal as well.

What we are left with now is a boy who doesn't understand why his beloved therapist no longer visits him each afternoon after school. A boy whose hyperactivity and agitation have most definitely increased again, along with my own stress and guilt at not being as skilled or patient at keeping him engaged myself. My husband and I are faced with the daunting appeal process that lies ahead; one that will likely take up the next four months (at least) and require $150/hour for the services of the autism advocate we are hiring, not to mention the uncomfortable situation my husband is going to be put in since this will inevitably end up as an investigation on his company by the department of labor.

His company has taken good care of us financially thus far. They have given him a solid job with room for significant growth in a time when many families worry about that sort of thing. And yet, they aren't able to give us what we really need the most: help for our child.

Autism benefits for a company the size of the one my husband works for would cost millions of dollars. I realize the impact this has on a company's bottom line. But I also know just how many millions of dollars my husband brings in for his company...a number that far outweighs what an autism benefit would cost.

There are many large corporations who have collaborated with autism support groups to create such autism packages. These companies have realized that by doing so, they've created a better environment for their employees as well. Productivity levels will increase, not only because the employees loyalty will increase, but because they aren't having to spend countless hours during the workday fighting unpaid insurance claims and researching treatment options that might get paid. These companies have taken a huge step forward that I hope more companies will follow. But they won't do it unless we parents take a stand and let them know just how important it is. And so, as frustrating as it is, we all must do our part in helping this country realize the importance of making treatments for autism like ABA accessible to ALL families. We're going to have an even bigger problem on our hands when these kids reach adulthood if we don't help them as much as we can as children.

Fuck You, Universe

2010-10-19T12:05:00.000-07:00

I feel like I have just had the wind knocked out of me. As though someone has told me of a death in my family. That is the heaviness I feel in every molecule of my body at this moment.

I just received a phone call from our insurance company from a representative that told me that the ABA services we have been receiving in-home since May...the ones I worked my ass off to get for two years...were 'authorized in error and will not be covered past today.'

I am beside myself. I am sobbing and screaming out loud and have no idea what to do next. The other half is in a business meeting and will call me afterward, but I don't know how we're going to counter this decision with his company.

M is a different kid since our therapist began working with him. He is happier and calmer from the engagement she provides him each afternoon. MY life has been happier and calmer since she started coming here. Holy shit, you guys, I am FREAKING OUT over here.

Please, please let this be a bad dream.

I know it sounds dramatic, but this is so important to our entire family.

I am absolutely crushed right now.

Community...I Want One

2010-10-17T10:44:00.000-07:00

For those of you readers living around me in my beautiful, coastal town...fear not! I totally realize that I have a community here--and a damn good one at that. It's pumpkin festival time here again and even though the traffic sucks, the vibe is delicious and fills me with the warmest of fuzzies. I love this little town. I love how excited my children (well, I'm making assumptions for M here) get when they pass by all of the pumpkin patches. I love the pumpkin weigh-off and the small town parade. I love my friends. I have such wonderful friends in my life here; friends who always have my back when I need them, who are always up for a wine playdate with the kiddos, and who listen to me when I just need to talk. Of the latter, I sometimes wonder why or how they can possibly want to keep calling me or inviting me to things. Sometimes I annoy myself with my autism talk. So, thank you, beautiful friends, for continuing to like me. No matter where the wind takes my family down the road, I sincerely hope you are still a part of my journey!

But back to the part about wanting a community...we move around a lot. It's totally by choice, too, since the other half and I are apparently each tainted with a wee bit of gypsy blood. A good friend often jokes that we must be a part of the witness protection program. I've mentioned it before, but at 30 months now, this is the longest we have lived in one house since either of us started college back in, um, 1992. That's a lot of packing and unpacking boxes...and a lot of never really getting settled in your space. I'm tired of not knowing where I am supposed to be. It's not that I don't still have the desire to experience new places--I absolutely do--but I am getting to a point in life where I realize that I am holding back a bit of myself because I don't know how long I will live here. Sure, I totally realize that I should just go ahead and volunteer for the festival since I am a member of this community at present, but it's almost like that's a tiny bit more of myself I am afraid to invest because all of the people around me seem so sure of where their place in this world is. I'm sure that sounds absolutely ridiculous. It sounds ridiculous to me just typing it. I guess I am having trouble finding the right words to truly describe how I'm feeling.

Another problem is the other half. I have made a promise to him that I wouldn't ever bad mouth him on this blog--and I haven't--but I will say that our personality differences in this regard do make finding (and loving) a community a bit more challenging. Volunteering isn't something that is important to him. (Though he has been the most amazing soccer coach for teams he didn't have a child on in the past) Finding lifelong friends other than the ones he's had since high school and college is also not particularly important to him. I need a village, he does not. I suppose that's the yin and yang of so many relationships, but I find that aspect of our marriage to be the most difficult. I find myself going to things with only B. M's disability makes outings like yesterday's parade a bit more challenging. And the fact that we hung out in an open backyard of a friend's home for six hours...well, that would never have worked if M was there, unfortunately. Our family is often divided as I am aware so many autism family's are. But I think that the other half's lack of desire to be a part of this community makes it all that much easier to leave him at home with M while B and I explore and create lasting friendships.

The question of where to live for the long haul haunts me daily. What if there isn't a place that truly suits our entire family's needs? I have a sense that if we moved back to our hometown where my wonderfully helpful in-laws live that the other half might perk up a bit and want to have friends over for cookouts and family get togethers. But that would be because it's his friend and family base...his comfort zone we'd be returning to. As much as I love these people dearly and know that I would forge a wonderful life there, I fear losing a tiny bit more of my own wants. I love the California lifestyle. I love how easy going people are here about the way others look. (I noticed this even more on a recent trip back to Austin where they used to be relaxed in the way the women look, but more and more seem to be losing that sense) I love the weather here. I love the ocean and the mountains and the trees. I love that I live in a small town where I see at least one person I know (and like) every time I go to the store. And on the other side of the coin, I love watching my children play with their cousins back on the mother ship. I love that my sister-in-law. K, loves M (and, of course, B) with all the love she has for her own children, and that she would be an amazing support for us were we to move back. I love that it costs a hell of a lot less to live on the mother ship than it does here. And I especially love knowing that if the time comes for M to live in some sort of an assisted facility (gulp) that there would be family back there who could visit him.

Sometimes I am right on board with the other half to say 'screw it' to all of those worries and just pick up the family and move abroad. For example, Switzerland has AMAZING services for children with disabilities as well as the cleanest overall environmental qualities. And sometimes I think we just need to find a different town here in California that fits the bill a bit better in terms of schooling and commute time for the other half. But will we be in this same position in 30 months after settling down there? So many questions that I suppose no one can really answer for me.

I need to do a better job at living in the present, but my head sometimes just won't allow it.

Hiatus

2010-10-13T13:15:00.000-07:00

A little break will do a Mama good, but damn is it hard to jump back into reality!
I was fortunate enough to finally have an entire week without hands on parenting duties. I visited my parents back on the mother ship (after having not seen them for nearly a year-crazy) and then the other half flew in and we joined some of his friends and their wives for the Austin City Limits music festival. I am fairly certain I have officially gotten too old to spend three days drinking ridiculous amounts of alcohol in the hot outdoors of a Texas park filled with 90,000 people each day. Ouch. My liver hurts! I was so, so ready to get back and see my sweet boys. I missed them so much, and I realized that feeling such an emptiness in my heart without them was exactly what I needed to feel to refresh me and get me ready to live the day to day craziness until the next break! (which will likely not be for a very, very long time)

Along with the reality of day to day parenting comes the reality of crappy things happening around us all every single day. Okay, so the rescue of the Chilean miners is a huge bright spot of goodness, but let's face it, it's tough out there.

I got some news from a close friend yesterday that has sent me into a bit of a tailspin. One of B's best little buddies has just been diagnosed with leukemia. I can barely type that out without getting a huge lump in my throat. This little guy isn't even four years old and he has fucking cancer. Seriously...WHY?

Clearly I am not experiencing the same depth of emotion as my friend is feeling for her son, but I have not thought of much else over the last 26 hours. I feel a heaviness in my bones and have been walking around in a daze. This is just too close. Too, too close. And I want to be there for my friend in every capacity she needs me to be without stepping on her toes or making her feel like I am doing too much.

Isn't that fine line in so many of life's situations a bitch?

No matter your beliefs, please keep a really freaking amazing little boy in your thoughts or prayers. Light a candle. Meditate. Do a dance. Just send some healing power to this kiddo. D is truly one of the strongest and toughest three year olds I have ever met. This kid's been riding a two wheeler since he was two years old and jumping off of bike ramps probably as long. He has a gusto like no other and I know it will serve him well in this fight.

From The Mouths Of Babes

2010-09-21T08:48:00.000-07:00

About a month ago, B and I were in the waiting room of the pediatric therapy center M goes to for private occupational therapy each week.

There was a boy there, a couple of years older than B, waiting with his mother for his appointment.
It was clear that the boy was on the high functioning end of the spectrum. His social skills were a bit immature and robotic; things that my delightfully non-judgmental B didn't care about at all.

At one point, the boy said to his mother (while looking at me), 'Is that his Mom?'

Before the mother could answer, B did it for her by saying, 'Yes. That's my Mom. She cries a lot!'

WTF?!!

Fortunately, the Mom looked at me and said with what I believed to be complete honesty, 'That's okay. I do too!'

We laughed about the waiting room at a therapy center being a safe zone for such frankness. Perhaps B, even at the age of three, also sensed that because I have never ever heard him say something like that before that moment! (and I better not ever again!)

Naturally I fixated on this statement for a little while. Does he really think I cry a lot? Do I cry a lot?!

Don't we all cry for our children at times, special needs or not?

That afternoon in that waiting room has definitely stuck with me. I try to keep my emotions a tiny bit more in check in front of B. But I don't entirely regret the fact that I so often wear my heart on my sleeve. It's a part of who I am, and hopefully B will always know that it's not because I'm crazy (well, not too crazy, at least) and instead that I just really, really care.

Ahh, insecurities. Aren't they a bitch?

The Twilight Zone

2010-09-17T15:02:00.000-07:00

Imagine a world where your school district gives you *nearly* everything you have asked of them. A world where when you suggest that your child might benefit from being taught to use an augmentative communication device, they readily agree to pay for you (and him) to go to a center to try out various types.

Imagine a world where one device is chosen by the team (a Nintendo DS) despite the Mom's concern that its screen is too small for her son to use. (Though the Mom doesn't want to make too big a fuss about it since, hey, the district is actually finally moving in the right direction here!)

Imagine that a couple months' after that decision is made the Mom very briefly mentions that over the summer her son's interest in the family's ipad has grown significantly and that she is still a bit concerned that the Nintendo device won't work because of her son's fine motor skill issues.

Now imagine a week later getting an unexpected phone call where you are told, 'No problem, we are happy to purchase your child an ipad AND the prologquo2go software for it AND we plan on teaching the district's speech and language pathologists how to use the program in case it is warranted for other children.'

SHUT UP.

But, yes, folks this very thing has happened for our family and for our M from a district I have struggled with for two years. I think I am in the twilight zone and something really screwed up is going to happen that will snap me back into reality! I am so ridiculously excited about having a team to help my little guy learn to use this communication tool, and I hope and pray that it is the thing that helps us to finally get a gauge for what my little guy wants and feels.

Last night as M was laying in bed, I asked him, 'What do you want to be when you grow up? Do you want to be an artist or a musician? Do you want to be a fireman or a teacher?' And my boy seemed to get tears in his eyes as he stared intently at me during my questioning. It is heartbreaking to miss these moments with your child because he is non-verbal. B proclaims his desire to be a different thing almost daily and I love hearing about it. Oh, what I would give to know what M dreamed of being!

So while I cannot allow myself to get my hopes up too terribly high that this will be the thing that finally helps our boy to 'talk,' I hope my time in the twilight zone extends a bit longer so that I am able to witness the transformation from a boy who can't communicate with words to a boy who can communicate with the help of an electronic device.

Life Without Plastic

2010-09-14T13:28:00.000-07:00

I'm not a huge fan of 'Parents' magazine, but I've been getting them each month from a free subscription that never seems to end. (anyone else get magazine guilt when they pile up unread?)

A couple of months ago there was a good article about environmental toxins and toxins in our homes.

I've really tried to use less plastic in my life, while also being careful to not let myself get too neurotic about it or hard on myself when I'm out of glass storage containers and have to reach for those few tupperware pieces I still have left.

It's a lifestyle change to stop using so much plastic, and one that isn't going to happen overnight. At least not for me.

When it comes to my kids, though, I'm really trying to pick up the pace by replacing old, plastic sippy cups with Kleen Kanteens, not buying as many plastic toys (why, Disney, can't you make better quality toys since my kids are total suckers for them?!), and I don't reheat things with plastic wrap or in plastic containers anymore.

Because of M's fine motor issues, we have found that we need special, lipped plates to help make his mealtime a bit easier for him, and a bit less messy for us. Previously, I'd only been able to find these sorts of plates in questionable plastic form from the special needs catalogs. The scratch marks on the bottoms of those plates made me a bit concerned...what is leaching into my children's food as they eat?

'Parents' listed a wonderful site that I finally got around to visiting yesterday, and I'm a new fan! Life Without Plastic had these fabulous, deep plates...

And these adorable cereal bowls for kids...

I also got a couple of steel mugs for the kids, and a great, airtight container for M's lunchbox. I'm looking forward to getting them and tossing my old stuff in the recycling bin!

They've also got a great blog that I'm looking forward to delving into a bit deeper. I think that whether you believe toxins are responsible for autism and other diseases or not, we can all agree that our landfills and the animals we share our planet with would be a heck of a lot happier without as many plastics.

This Is A Post About Poop

2010-09-13T18:35:00.000-07:00

I just thought I'd warn you, okay?

If you're a parent of a child with autism, you probably chuckled and thought, 'Yeah. SO?'

We just got back from an appointment with our developmental pediatrician who is also a DAN! doctor.
Our M has had a history of some pretty wicked gut bugs that have required the treatment of some high-powered antibiotics and yeast treatments to kill them. And then, of course, our daily dosage of probiotic to keep him supplemented in the good stuff.

M has a really distended tummy that looks kind of painful at times and is often shown off to the world because he is constantly lifting his shirt and tickling or rubbing on it. He's a size 8 in the waist and a 6X in the length, so we have one heck of a time finding comfy pants for him. I'm pretty sure he's destined for a life of elastic or drawstring waistbands, the poor boy.

Anyhow, we did yet another lovely stool test to see if his previous gut buggies were back in force causing the latest belly pain and distention. For those of you who have never had the pleasure of trying to get a stool sample from your child, let me offer you a pat on the back and a 'lucky you' because it's one hell of a treat, let me tell you. The past four times I had to do this, I obtained our 'specimen' by holding the lovely fast food, french fry-like paper tray the lab gives you in between my poor child's legs as he sat on the toilet (you'll never eat fries from In n Out burger with the same gusto, I promise you). This while simultaneously hoping that he does not squirt out a tiny bit more pee on my wrist or worse, in the sample trapper, thus tainting the french fry tray and rendering it useless for said poo sample.

M was younger and much less stubborn the last times we tried this, so I was able to get what I needed with my arm going only partially numb. That method was not going to fly this time around, however, so I needed to get creative. I'd heard of people turning off the toilet water after flushing so that the toilet was empty and then putting some sort of bowl in there to catch the poo. I don't know about you, but I like my cookware and storage receptacles too much to subject them to that sort of torture. Because surely people don't actually keep them after they've been used to trap poo, right? So ingenious girl that I am, I decided to create a tin foil poo catcher by spreading a piece out beneath where said poo would fall (and away from any potential pee tainting), securing it by putting it between the bowl and the seat. Since I am no longer employed in the out-of-house work force, I felt pretty good about using my remaining brain cell to come up with such a contraption. I'll gladly lend the rights of my idea to any of you in need of it :)

I will spare those of you who won't be subjected to this delightful process the details of what happens next with the ice cream tasting spoons supplied in the kit. Let's just say the other half could never handle this without losing his lunch...trust me.

Fast forward to today's result-learning doctor appointment...I would hereby like to exclaim to the world that M, distended belly and all, has NO weird buggies inhabiting his gut NOR any yeast wreaking havoc. The only negative blip in the report was that he's lacking in some of the good gut flora; a point that stumped our doctor since M has been supplemented daily with one of the strongest probiotics.

We still can't figure out why the continued loss of words (down to no regularly heard ones at all) and the potty training regression. Despite that, I'm still pretty freaking happy to not have to wrestle with my 61-pound seven-year-old in order to give him antibiotics and anti-fungals.

Another oddly fulfilling day in the life, I suppose. I'll take it!

Cracking Yourself Up (For Reasons Most People Wouldn't Understand)

2010-09-12T11:55:00.000-07:00

I've had a bit of trouble sleeping this week. Not sure exactly why, but being one who absolutely needs my beauty rest, this isn't a fun thing for me to experience.

This morning when I would have loved to have slept in, I awoke before 7 am and realized that, finally, after nearly two months since the last time I'd gone, I would be able to use this opportunity to go sea glass hunting!

The timing of the low tide was in my favor, the air was fairly still, and the cafe down the street was open for me to get my morning cup o' joe.

I got to my favorite 'secret' beach, greeted the herons and harbor seals, and made my way across the sand.

It's a good thing this beach is totally desolate on mornings like this. I'm sure people would wonder who the hell I was talking to! But it's my time to talk to the animals, sing out loud, and ponder life.

I cracked myself up at one point when I thought to myself, 'I hope that I find something really rare today.'

And without a hitch, I answered my own thought with a chuckle because, after all, I'd found a little peace and quiet BY MYSELF...and isn't that the rarest thing of all?

An Odd Sort Of Contentment

2010-09-11T10:42:00.000-07:00

Do we parents of kids with special needs ever get to the place where everything is in a state of balance? For me, the answer is most definitely 'not yet.' But I have high hopes of getting there...maybe for a day at least.

However, I discovered a feeling yesterday that sort of caught me off guard. As you may have read previously, after a very long battle with our school district they hired private 1:1 aides from an outside agency to work solely with M at school. These aides are legitimately ABA trained unlike the paraprofessionals who hadn't the slightest idea what they were doing, and to my son's detriment, I fully believe. These aides began working with him last February. Then, in May I was able to finally begin an intensive in-home ABA program fully funded by our insurance. (minus a small $15/day copay) Unfortunately, we have one agency providing the ABA at school and another agency providing the home services; but these people have all come to surprise me in a very positive way...they actually want to work with one another to make sure that all are on the same page in teaching my son important life and educational skills.

A meeting was called by the school's overseeing behavioral analyst, and we all came together yesterday to find that both groups were doing very similar tasks, and where one was doing something different, the other offered to take the time to create a detailed list of their steps to achieve a goal. I was floored. It may sound like something one shouldn't get floored by, but having heard and seen how school districts hold what they provide your child very privately, I never in a million years thought they would be flexible enough to listen to someone else's ideas and theories.

We've agreed to send home a detailed daily journal so that school and home therapists continue to have dialog between one another. We've agreed for the case supervisors to meet in person again in the future.

Yes, these outside agencies are being paid a large price for their services...but I really believe that they give a shit about my child and about his future. It's thrown me for a loop, in all honesty. But even more than that, was the feeling I left with yesterday of worrying that if we do get to move to a new district I may have to start this fight all over again. Dare I say that I am *almost* content with my son's current placement?

I still feel the school's campus and it's highly mixed needs, special day classroom are not the most ideal for M, but given what we have to work with and the very unlikely chance we would be successful in getting the district to pay for the crazy expensive private autism schools I covet, I think we're doing okay for ourselves at the moment.

Now don't go thinking I've given up on those coveted schools. I most certainly have not! I think that if M could actually attend one of them our lives would be even more fulfilled than they are currently and I think M would be able to gain back even more of what he has lost. But for the moment, I will gladly take this feeling of partial contentment...of not needing to fight and worry for now...and I will enjoy it.

Peanut Butter On Your Penis & Various Other Things I Never Thought I'd Say

2010-09-07T13:38:00.000-07:00

I posted the following over at Hopeful Parents today. Be sure to check out all the amazing parent writers over there!

This parenting gig is full of surprises. Add the even crazier twist of parenting a child with special needs and, well, it's no wonder so many of us enjoy a glass of wine (or three) each night.

M is seven and has had a big regression in the area of toileting. I feel the need to knock on some wood as I type how fortunate I feel that this regression is in the area of numero uno and not numero dos.

Regardless, it does pretty much suck to have to clean up pee multiple times each day when trying to keep him in big boy underpants and then having to remember to bring diapers on outings...for your seven year old. I've had to start buying diapers online through incontinence web sites. I've found myself spending hours searching to see which site had the lowest price or a free shipping coupon. The first time I searched for diapers online I clicked on a benign-looking web site with the word 'diaper' in it and was shocked (and fairly amused) to read that it was a web site for infantilists who enjoyed wearing diapers as adults. Who the hell in their right mind would CHOOSE to wear a diaper as an adult? Clearly these are not adults who parent children with special needs! I will say, however, that some of their prices were competitive, and the brands were the same ones you'd find at other incontinence stores...but I just could not bring myself to make a purchase there!

Fast forward to last week when I decided to purchase some diapers fromOverstock.com. Yes, believe it or not, Overstock even carries diapers! (and, no, I do not work there) Since their shipping price was right, I decided it was worth it to try out the smallest adult-sized diaper that they carried--a size small--since the waist size fell in the range of my boy's distended belly.

Unfortunately, I learned that though they do fit around his waist, the other--ahem--areas of the diaper do not fit very well. I'm banking on the hope that M will not need diapers in 10 years (please, please!) so I'm hellbent on using these suckers up even though they are a bit, well, large. I put one on him for our two-hour walk yesterday in hopes that since he'd be sitting in our jogging stroller the diaper would do the job.

Not so much.

We had to strip down our poor boy once we got back to our car to drive home, and with no clean clothes with us, (because you forget to bring the change of clothes when your child has suddenly decided to not use the potty at the age of SEVEN!), a very naked M had to be strapped into his carseat for the drive home. The other half was a bit pale as he delicately tried to maneuver the buckle that clips into the car seat near the poor boy's private parts. One crisis averted, we finally made it home.

We were planning to go into the hot tub after a quick snack, so the other half decided it would be okay to feed M in the buff. It was a warm day after all.

Unfortunately, our little man is not what you'd call a neat eater. And the peanut butter that was on his apples ended up being put on his...nevermind. You know where this is going, right?

When he got up from the table and I noticed what he'd done, I was a tiny bit alarmed at how easy the words, 'M, come over here so I can clean the peanut butter off your penis' rolled off my tongue. As though it was completely a normal occurrence in our lives. The other half and I cracked up over this and remarked how there are so many bizarre things that come out of our mouths that we never ever would have thought back when we were much cooler (and thinner) 20-somethings, blissfully unaware of the mayhem that lay ahead of us.

Other bizarre things I have caught myself saying to my seven-year-old with more regularity than I probably should admit:

-Please quit chewing on the dvds.

-Don't put sand (or substitute rocks, dirt, seashells, and various other outdoor items) in your mouth.

-Vacuum cords are not chewies.

-Stop drinking the hot tub water.

-How did you get spaghetti sauce inside your ear?

There's really no brilliant way to end this post other than to ask that you all make me feel a bit better about this craziness and share with me and other Hopeful Parents the things you can't believe have come out of your mouth!

Autism In Film

2010-08-30T10:13:00.000-07:00

Everyone is abuzz about Temple Grandin's appearance on the Emmy's last night. For those reading this blog who have been living in a cave, Claire Danes starred as our most notable, contemporary autistic person, Temple, in the HBO film 'Temple Grandin' which was nominated for 15 emmy awards, and took home seven! I have to admit that I have not yet watched her speech, but plan to as soon as I'm done here.

Okay, I lied...I had to go view some of the acceptance videos myself before I could proceed.

The last bit I saw shows Temple (in regard to making her story into a film) saying to the executive producer and founder of what is now Autism Speaks, 'I knew that a Mom would do it right.' Damn. That just made me a little teary.

It's fantastic that a film about an autistic person has garnered so much attention and award. Yes, we all have heard about autism and know someone(s) afflicted with it, but in reality there is still not enough being done to understand what the hell is responsible for the rise in cases. And don't get me started on all the people (my parents included) that like to immediately follow my previous sentiment with one about how we have better diagnosticians that are labeling people autistic more readily than they were in the past. That's just not the whole picture. That's only a teensy tiny sliver of it.

But that's not what I want to talk about here. I want to talk about the four autism-related films I have had the pleasure of watching this past year. Whether you have been touched by autism or not, I'm betting you won't leave any of these with a dry eye.

One is, of course,Temple Grandin's story, and the other three are documentaries.

I've mentioned before about my experience meeting Rowan and his family in 2009. They are the subjects of the book and film 'Horse Boy,' about a Father's quest to help his severely autistic son through the help of horses and Mongolian healers. Rowan and his parents live in Elgin, Texas, a small town outside of Austin near where we used to live. They run the Horse Boy Foundation, which provides therapeutic horseback riding to children with developmental disabilities as well as to neurotypical kids. As amazing as the book was to read first, watching the film months afterward was even more rewarding. To have sat down and spoken with Rowan and his Mother personally, and to have heard her tell me that-as crazy as it sounded-these healers really and truly were the only thing that had made a lasting difference to their son...well, that in itself was also a magical experience. It's hard to not feel hope and a bit of 'would that work for my child' when you speak directly and frankly to someone who has had such a mystical experience.

Next is 'Autism: The Musical.' This is another great film that was presented by HBO. (Go, HBO!) This one's been available for a few years, but I was just finally at a place in my own journey where I felt I could watch it. Naturally, I sobbed through the whole thing. But it was totally worth it. It's a beautiful, uplifting story about one Mom's desire to create something theatrically beautiful with a group of kids,(including her own severely affected son), all on the spectrum and functioning at various levels. It's brilliant and I found it oddly comforting to see a couple of other kids whose autistic traits were very similar to M's.

Finally, there is another HBO documentary, 'A Mother's Courage: Talking Back to Autism,' that was definitely the toughest of the four for me to watch, but by far the most rewarding.

Wow. I'm not going to lie; if you have a severely affected, non-verbal child, this one's going to be difficult for you. But in the end, it offers so much hope and insight. It is truly a special piece.

Toward the end of the film, we learn that the beautiful, non-verbal child at the heart of the documentary has desires to play the piano and compose music. I'm not going to go into any further detail than that, but let me just say that when this moment occurred, I felt my stomach go into knots and my heart explode as I wondered if somewhere deep inside M he wanted to tell me that he, too, had passions and desires to be someone beyond what his autistic brain and body currently allow. I actually don't think I can type any further about it without the emotions taking over me...it is that powerful to me still.

I realize that not everyone wants to go to 'that place' by watching films that stab you with emotion, as these surely can. Even the other half has refused to watch a single one of these despite my pleading with him to do so. But perhaps if you're feeling like you don't see other kids who do the things yours does, or you want to learn more about what other parents of autistic children have found helpful in their journeys...or you need to have that cathartic letdown of a good cry, then rent one of these. Just make sure you've got a box of kleenex and a carton of Ben & Jerry's next to you. Trust me...you're going to need it!

Spare Some Good Energy?

2010-08-26T10:41:00.000-07:00

We had an ironic thing happen last weekend...we found a house. And we are in love with it.
It is in a better school district, 6 miles from the other half's work as opposed to 40. It has a HUGE backyard that is easily accessible and fully enclosed for M's safety. We have a yard that is an open space preserve currently, and while lovely, it is not practical for two young boys who could easily wander if not watched like hawks. It is a ONE STORY...I can't yell that loud enough since we have been living in the house of stairs for the past 2.5 years. Our current home is a 3.5 story with a crapload of stairs. I blame the increasing size of my rear on these stairs...you know, since I'm building up my glutes by constantly walking up and down them :)
B has chipped his tooth on these steps. He has had to have stitches on his chin because of these steps. I have severely twisted my ankle twice on these steps. We constantly have to provide physical prompting to M to go up and down, up and down these steps. I freaking hate stairs!

Anyhow, this house that we happened upon truly by accident, is represented by a realtor who happens to have a couple that he is representing who are looking for a home in our little town...in our price range. He will be here within the hour to preview it for his clients.

We're not running out and making any offers on this other house yet by any means. No, no...we've been through the selling game way too many times to get our hopes up that high. And yet, it is hard to not fantasize a tiny bit about how nice it would be if this all worked out for us. Oh, how happy I would be to not have to go through the process of listing and showing another home. We've had mixed luck with the four houses we have sold before this, so I truly believe we're due one of those amazingly easy home sales. (fingers and toes crossed)

So think good thoughts for us on this one, won't you? We could use them!

Verbal Vomit

2010-08-24T11:54:00.000-07:00

Sorry about yesterday's verbal spewage. We finally have the beautiful summer-like weather I have so desperately craved, but to the wrong extreme for our coastal town with its non-air conditioned homes.

So that combined with the heinous amounts of pee that have been coming out of my once potty trained M, and my need for a little 'me' time, had me buzzing like a hummingbird amped up on speed. I was well out of sorts for two whole days and just could not calm myself down enough to breathe and take pause for one moment.

It's still hot as hell in my house today, but I don't feel out of control over it, which is fortunate.

M begins school tomorrow, and while I am looking forward to it in many ways, I'm also concerned for his happiness. He will have the same ambivalent teacher as the prior two years, and I don't know how happy he's going to be with me when he discovers that same crowded classroom tomorrow. Things just don't seem 'right' with M again, though in a different way then I have noticed in the past. For starters, he's having bowel movements only once every 2-4 days. This child was regular as could be, and I'm hoping that getting back to the typical school routine will help. But on top of this he is doing his head shake again. This is something we haven't seen since he was a baby. On rare occasions, I truly believe he shook his head in an appropriate gesturing of 'no.' But on most occasions, it is as though something is awry in his body; like an electrical buzzing is firing through him making his head shake side to side in an uncontrolled way. The sounds and look of panic on his face that occur when this is happening are horrible for a mother to watch. This happens with no known impetus as well as when he doesn't want to do something that is asked of him. As I explained to his ABA therapist, it is a total freak out. No better way to explain it. He just doesn't seem to have control and I can't tell it if it is something organic or behaviorally derived. It's tough knowing whether or not to seek medical advice or examination when you have a non-verbal child. You don't want to run to a doctor for every single thing when they likely won't know any better than you. But the worry nags at you and won't let go...

B starts back at nursery school in two weeks. He is definitely missing his buddies and that space that is all his own. He and I have butted heads way more than normal this past month that he has been out of school, making me miss my little man's mostly-sweet demeanor and helpful attitude. It's definitely still there in glimpses; wedged tightly between large bouts of non-stop talking and a disrespectful attitude. My friends who have children six months older than B keep telling me that this is a very three and a half thing. I'm going to hold onto that until he turns four and hope that they are right!

So that is the latest in Mama Deb land. Off I go to drink coffee in the heat since my need for caffeine clearly outweighs my need for cooling off. Hope those of you with little ones had successful starts to the school year!

This Is How I'm Feeling Right Now...

2010-08-23T13:11:00.000-07:00

...Mom, Mommy! Look at me, Mom! Look how big I'm getting, Mom! I'm a turtle, Mom! Don't call me B, call me Woody! I'm going to shoot my penis at you! I don't need to go potty! Mom, Mom, Mom, are you listening to me, Mom? NO...I will not stop playing ipad. NO...I will not take a shower. NO...I do not want to go to swim school. Mom, Mom, Mom!! I need something to eat, Mom! I don't want a sandwich, I want a cookie! I want grapes. We don't have grapes? But I want grapes! Mom, Mom, MOM!!!

And then--oh my gosh--when will that rescue remedy lozenge take effect? Is it 5:00 yet? How many days has it been since they were in school and the house was a tiny bit quiet? Has it really been six weeks since I last combed the beach for sea glass? Why is my heart always pounding and my stomach queasy? Why do I have to call the insurance company AGAIN? Why won't this flipping real estate market turn around so we can get out of this stupid house and move to a more functional one in a better school district? Why do I feel like I am buzzing around all day doing stuff, and yet I have nothing to show for it in the end? Why is there so much laundry? And why do I secretly love that laundry is the one thing I actually have some control over? Why does M have to have the same awful teacher for four years? Why won't my dogs stop barking at our neighbors? Why won't my neighbors stop smoking so many cigarettes and blowing it in my open windows? Why can't I grow basil here? Why are my lips in a constant state of chapped-ness? Why did I just inhale a gnat as I was typing? (true story!) Why are September and October such ridiculously busy months? WHY CAN'T LIFE SLOW THE FUCK DOWN AND GET A LITTLE BIT EASIER?

Oh, you don't know either??

Well, that makes me feel a bit better :)

Gone Fishin' - A Guest Post

2010-08-08T10:17:00.000-07:00

I have followed the following blog for a couple of years now and find Bennie's way with words extraordinary. Well, that and he knows about the great island of Kiawah in South Carolina! Those of you who know me personally know that I spent much of my childhood vacationing there, and my parents even retired there for a bit. It's a special place!
The following is Bennie's recent post on Hopeful Parents. I thought it was so raw and real--and true of the lives of so many of us parents with kids who have special needs--that I asked for his permission to repost it here.
I, too, have had great difficulty finding the spirit to write lately and I know that much of that is from the ebb and flow of my mood.
Give Bennie's site a gander when you're done reading. And check out he and Ben's artwork while you're at it!

It’s been awhile since I last wrote here at Hopeful Parents. My absence hasn’t been intentional – it’s just been one of those times where life just happens…or maybe hasn’t been happening enough to blog about it…or perhaps more precisely,feeling like blogging about it. Okay let me be just a little more honest with you. I’ve been depressed.

Depression is an illness I am very familiar with. In fact both my wife and I are so up to date with the latest new-fangled anti-depressants and anti-anxiety medications that we are surprised we are not called upon by pharmaceutical companies to provide potential patients of possible side effects. You know those advertisements – the ones where Wonder Drug returns you to “normal” life except for the insomnia, hot flashes, diarrhea, nausea, constipation, shortness of breath, hemorrhoids, uncontrollable flatulence, drooling, headaches, affectations for reptiles, dry lips, body odor, hair loss, joint pain, or an odd desire to set your neighbor’s kid on fire. Like so many of you, most likely all of you who visit Hopeful Parents, the realization that life will never be “normal” again sometimes weighs me down like a cement life-jacket as I float along the Sea of Life.

Don’t get me wrong, just like all of those drugs that keep my son so much healthier these days I am genuinely thankful that some doctor, scientist, or researcher discovered emotional pain relievers. It’s just that depression is another one of those consequences of exceptional living that I…we…don’t deserve. It wasn’t something we either intentionally earned or even wanted. It came with the “whole package.”

And here’s the worst part: of all the parents out there we are the ones expected to hold our shit together the most. God forbid any of us give up, walk away, toss in the towel, deciding there’s got to be somebody else or a social service agency better qualified/capable/deserving/undeserving/needing/willing/ loving/etc. to care for my kid. Oh that person becomes the ultimate pariah of society…the worst of the worst! So we continue letting our souls and spirits descend into a special compartment of Davey Jones’ Locker filled with lead waders and concrete flippers.

But there is the upside: we know how valuable or children are! We do know how much joy and love they bring into our lives. We know how often they bridge the gaps between races, religions, cultures and everything else that divides the rest of us. We sometimes even know of special gifts, incredible potential or talents, accomplishments never expected; diamonds within the coal. This is why we continue “the journey.”

I’ve been casting an un-baited hook for awhile now. The illness of depression makes you selfish which just adds more slag to that weight pulling you down. Recently I’ve run into a few folks that enjoy dropping a cane pole in the water now and then. They too have occasionally been using the wrong lures to reel in that “keeper” we all want to brag about. The one we take a picture of...that ends up as a happy news item...something we are darn well proud of. That is the beauty of having fishing buddies – in the end we are proud of how we contributed to that special catch – at least that has been my experience with those I love to cast with. That would be the little fishing community of Hopeful Parents.

Bennie and his much more talented son, Ben, blog at A Work of Art: Raising Our Exceptional Son.

Seven

2010-08-06T08:38:00.000-07:00

I wrote the following for Hopeful Parents today. Be sure to check out their site including their newest contributor, Valerie, from Jump on the Rollercoaster!

I have the pleasure of writing on the 6th of each month for Hopeful Parents, so I will also have the pleasure of writing a post to celebrate each of my son's birthdays. Today M is seven, and like the last, I find this addition of a year to be bittersweet. I am proud of my little man and what he IS able to do every day. He has such a genuinely beautiful soul that shines regardless of his lack of words. But it is hard to pass the years-the ones you had expectations of before he became him-and not feel a tiny bit crushed at what isn't.

This year, I have found it particularly difficult to hear about all of the other children M's age who are joining team sports. Sports were and still are a big part of the other half's and my life. I began playing soccer at age six as did my husband. I listen to my friends talking about juggling practice schedules, first goals scored, paying for equipment, and cheering in the stands with other parents. It makes me feel the slight twinge of the green-eyed monster, I must admit. It makes me feel like we weren't invited to the party, and that everyone forgot and still wants to tell us how great it was afterward.

And the thing is, I don't want my friends to stop telling me about it. I truly do wish to celebrate each of their children's achievements. Oddly, I suspect that when friends tell me what their children are participating in, they don't even think about M as being the same age and missing out on those opportunities. In fact, sometimes it is hard for me to remember that M is the same age as their kids. Or perhaps this is just me projecting my sadness that age hasn't quite caught up to M; as though he is this Benjamin Button sort of being, aging in reverse.

As time has progressed, my boy has lost words he once had. He has lost the ability to be potty trained during the daytime. He has lost interest in his peers. And yet the calendar shows me that he is seven. Seven years old.

We participated in Special Olympics baseball this past Spring, but the realization that this was more so we'd have that photo of him in a baseball hat and jersey rather than for his true enjoyment came only a few practices in. My boy would rather watch than play, and so this is how we participated instead. And truly, I was totally okay with that.

I'm becoming okay with a lot of things I didn't ever think I would just be 'okay' with. It is a long journey to full acceptance, though, and one with which I will always wrestle. I think the line between acceptance and giving up a hope for him to be able to function at a higher level is a fine one.

Regardless, I will continue to build up each birthday with as much gusto and hype as I can muster. I will bake him his cake and put the candle he is not able to blow out himself on top. I will shower him with presents I am not entirely sure he will enjoy. And we will sing, and we will smile with true joy. Because we love him...No matter what.

Irving strangulation case: Mom says she wanted 'normal kids'

2010-07-22T15:00:00.000-07:00

Irving strangulation case: Mom says she wanted 'normal kids'

Okay, please don't read the above if you are the parent of a child with autism who is feeling overly stressed right now as I was yesterday when I read it!!

I am not 100% sure about even re-posting the story here, but I feel a huge need to talk about it.

The link is not to the main news story, but to a blogger's thoughts about it. She gives some really good advice and insight that I thought was worth sharing.

I also want to tell my friends who are reading this--especially those of you who do not have children with special needs--that you make life easier for me every day that you are

here for me, listening and offering encouragement. Sometimes I wonder why y'all stick around. Even I get tired of hearing myself talk about autism sometimes. And yet you stay and you love me for me.

(well, and I have excellent taste in wine and music, but that's a whole other point-ha!)

But, seriously...thank you. I couldn't do this without you.

Five Hours And Counting...

2010-07-21T15:35:00.000-07:00

...until bedtime for my munchkins. I am fried. Kaput. Toast.
I feel like I am not dealing with anything very well today and I don't like how that feels.
I've been on hold with Vonage to fix a phone problem. I've tried to hash out a long, past due medical bill (again). I shook B's almond milk not realizing the lid had broken and sending a torrential downpour of chocolate milk all over me and my floor. I have talked to M's developmental pediatrician about doing another stool test because his belly is ridiculously distended again and the peeing-in-the-pants issue has escalated to him being in pull ups full-time for several weeks now. I've made an appointment with an ENT on the recommendation of our pediatrician to do a sleep study to see if M has sleep apnea. I have met with our social worker from the (worthless) regional center for our yearly see-where-we're-at-even-though-we-can't-do-anything-to-help-you meeting. I have hauled M to B's swim lesson for the first time (since usually he is in school when these occur) only to feel utter frustration and pissed-offedness at how he scratched me and clenched his jaw at me because he didn't want to be there. (and this was humorous since I was actually thinking about posting how it has been such a joy NOT to be scratched very often since our wonderful ABA therapist started coming here--that'll teach me for having positive thoughts. ha!) I have yelled at M at least three times to get his brother's beloved, new, now well-chewed, light saber out of his mouth. I have yelled at my annoying senior citizen dog who refuses to be outside by herself and God forbid away from our sides for more than five minutes. I have asked B five times to get dressed so that we can go to M's network spinal analysis appointment this afternoon. I have done three loads of peed-on clothing-filled laundry. I have told M for the millionth time that it is NOT okay to unroll the entire flipping roll of toilet paper, leaving it in a torn up heap on the bathroom floor. I have taken three chewed-on dvd cases out of M's mouth. I have yet again asked B to get dressed for his brother's appointment and he is still not following directions. (why do three year olds push your buttons so fervently?) I am having trouble tuning out M's constant verbal self stimulating. I HAVE A HEADACHE THIS BIG! (okay, that sort of made me laugh)

I am feeling fragile about my mothering skills today and I hate that. I like to be in control of my emotions and when I am not, it really bothers me. I mistakenly opened someone's message from one of the autism support boards I am that was horribly disturbing and made me want to yell at that mother for posting such a thing. I know that raising a child with autism is really freaking tough and don't need to be inundated with horror stories of other parents who have snapped because they couldn't deal with it anymore.

And now I take a deep sigh and I will go to M's next appointment. And maybe I'll be able to put my boys in a stroller and take a cleansing walk on the coastal trail to attempt to clear my head a bit afterward. And when I get home, maybe I'll pour myself a glass of wine as I make dinner. And maybe I'll even get to read a few pages of the great book I'm reading. And then I will go to bed and hopefully get a full night's sleep. And then I will wake up and hopefully find that tomorrow is a much better day...

Remembering

2010-07-19T22:12:00.000-07:00

I often get asked, 'When did you know something wasn't right with M?'
I don't believe our situation has been quite the same as so many families who have a child with autism, so I thought I'd share it with you.
M was a happy, healthy boy born past my due date by induction. (and, yes, this is one of the many things that I sometimes torture myself with as I think of the 'what ifs')

He was bearing weight on his legs at an early age. He smiled on time. He held his head up strongly. He sat up early. The one milestone he didn't make that first six months was rolling over, but we'd seen it happen one time and thought it wasn't a big deal.

Around six months our happy boy began to do a few things that puzzled us. He would incessantly shake his head-a giant grin on his face-as though he were trying to say 'no.' I mentioned it several times to my pediatrician in conjunction with the note that we also have a nephew on the spectrum, and each time I was brushed aside like I was saying the silliest thing she'd ever heard. M's head was also in the 95th+ percentile, which we questioned as well. Though in truth, my family has a history of giant Polish/Irish noggins!

At nine months M began to do another strange thing. While sitting up, and generally when he was very excited, he would put his little hands in fists out in front of him, tense his whole body to the point of shaking ever so slightly, and yell out happily, 'EEEEEEE!'

Again, I brought up this peculiarity to my pediatrician. Again, I was told, and I quote, 'This child is NOT autistic.'

A year came and I can recall looking at photos much later how withdrawn and timid he seemed at his birthday party as his Aunt K held him during present-opening time. I vividly remember saying that it was probably because he didn't know her well yet and was being shy. But was it really that, or did he falter further after his one-year checkup? I will never really know. I always am careful to tell people that were were not one of those families who saw overnight changes in M after a vaccine. There were the signs I mentioned earlier that tell us he experienced delays from birth. I try not to get too obsessive or caught up in the vaccine debate, but in my humble opinion, I do wish that I had spread out and declined some of the vaccinations I did give him.

Back to his first year...I became very ill right around that time with a mystery, mega-virus for three whole months. Multiple tests and trips to specialists (including a rheumatologist since my mother has severe rheumatoid arthritis) brought up nothing but a faint positive on the mono spot test. It was the rheumatologist who told me that I likely did not have mono, but a mega virus that mimicked it with no name. Regardless, it was the scariest kind of sick I have ever been and it left me in an awful state of depression.

M wasn't crawling at this point, yet another thing I had pointed out in concern to my pediatrician. Even though I knew in my heart that this wasn't right, I remember feeling so ill that I was silently grateful for his immobility at the time. It was about a month into this that my brother-in-law, the father of our nephew who is on the spectrum, spoke to my husband about his concerns for M's development.

When the other half came to me I felt very angry and defensive. I do feel sorrow for my initial reaction. I know now that it came from a place of love. My main reason for such defense, however, was that I felt no one believed that I had been concerned or asking questions leading up to that point. I have since that time learned on far too many occasions that a parent really does have to come to the point of seeing things for what they are mostly on their own. I am grateful that my brother-in-law prodded us to seek an evaluation from early intervention, but I am also grateful that the prodding was left at that and not taken too much further. I think just as a new parent needs her baby to sleep lots, then crawl, then walk...nature's way of preparing you for the next stage gradually, a parent of a child with special needs often also needs those baby steps to ease them into the hand they are dealt.

Our (less-than-stellar) pediatric neurologist that we began seeing around 18 months also would continually tell us that 'something was going on, but he didn't think it was autism.' Many specialists would say this to us as M did seem to have a certain engagement to him that didn't seem typical of so many autistic children. (*Please note that I firmly believe that ALL children on the spectrum have the desire and potential to engage and form relationships.) And then there is the almost-laughable labels that he gave us; the ones so many of you parents of autistic children also received: sensory integration dysfunction and global delays. I would love to know just how many children are given those descriptives and DON'T later end up with an autism spectrum diagnosis? Again, maybe it's all part of the settling-down-with-it process. Less scary words to help you ease into the whammy that lies ahead...

And yet, when we did finally get the A-word whammy, it was actually quite less of a big deal for me. I was alone with M at our yearly appointment. He was 4 1/2 years old by this point and had been seeing a slew of therapists and specialists for over three years by then. I calmly waited for the doctor to come in and calmly accepted his speech that went something like this:

Dr: Well, I suppose it's time we put a name to this.
Me: Yep. I figured you would say that this time.
Dr. (totally non-plussed, no emotion) I believe M has high-functioning autism. (and here's where you'll probably get the same chuckle I did when I left the office) Some people call it PDD-NOS, others call it Aspbergers.
Me: Ok. That's what I thought.
Dr.: We'll see him in six months to a year.
Me: Ok

Done. That was it. I didn't feel like I died that day. I think I'd died a hundred small deaths already before then. I didn't feel like someone had hit me with a baseball bat. I felt totally at ease. I called the other half on the way home and matter-of-factly told him what the verdict was. (though I always said PDD-NOS because even I am not so much of an idiot as to think that is the same thing as Aspberger's...seriously!!)

I was somewhat delighted to be able to stop telling people, 'Oh, my son has sensory processing issues and global delays.' The word 'autism' is a hell of a lot shorter and has much greater meaning to the general public, as vast as the spectrum is, and as little as people really do understand it.

The 'other health impairment' diagnosis that allowed him to be accepted into the public school's special ed. preschool program was quietly changed to autism. We were two months from moving from the mother ship to California and this change would allow us to receive more services than OHI would have.

Unfortunately that high-functioning diagnosis would not hold and I will never know if it could have had we stayed in Texas. Our boy, as you probably know, has plummeted and regressed into the world of moderate to severely afflicted autism. This began when he was nearly five, a sad situation I have not found duplicated yet through all of the families I have met in person or virtually.

I suppose the purpose of me writing this here and sharing it with you is twofold. First, I need to document these things for myself, in hopes that one day I can read it again and think, 'My, how far we have come!' But I also want to document it in case one of you readers is following a similar path. I am knee-deep in the emotions that come along with autism. I am often barely able to fully help myself find my way through it all. But I know that the one thing I can fully offer up is a type of mentorship to those who walk this path after me, just as so many--like Susan Senator or Casdok--do for me. Because it helps to not feel so damned alone in this all the time. And let's face it, even though the numbers are an astounding 1 in 91, you can still feel like the last one picked for the team. Sometimes I, as outgoing and personable as I may seem outwardly, feel almost autistic myself. And, perhaps, that is just nature's way of also helping me to understand just a little more...

Community

2010-07-06T13:04:00.000-07:00

I wrote the following for Hopeful Parents today. Please be sure to check out their amazing community of writers and families!

Recently I had one of those rare nights out with the girls, two who also have children on the autism spectrum. As we waited for our table, I had a more private conversation with one of them.

M is a newer friend. Our paths crossed before I even moved here, and perhaps that was the first sign that we should be friends. She has not walked down this autism road quite as long as I have, but through our various encounters I knew that I needed to reach out because I think we are quite similar; outgoing, normally upbeat and strong-willed personalities. Driven (perhaps sometimes to a fault), lapsed Catholic (bring on the guilt), and lead by our deep emotions that can sometimes empower us and often times overwhelm us.

I have felt at ease opening up to M. I am a very open and honest person, so this isn't normally an issue, but there are those things that a person sometimes needs to verbalize not only to the universe but to another being, and I guess that lovely glass of pinot noir, though only a few sips in, was the impetus to speak my heart. I told her--as I dropped the volume of my voice just slightly--that sometimes I feel like autism is my living hell; like I have done something really awful in a past life and this is my hell on earth to repay it.

No doubt, that is a strong sentiment, and one I realize has many tangential arguments that I acknowledge most directly. But at that moment, on that day, I needed to tell someone that dark feeling inside my heart. It felt good to let it out, and it felt good to hear from M that she, too, has had that feeling at times. I don't think it's a coincidence that the two of us were raised in Catholic homes where you were encouraged to confess your sins to a priest. Though we don't practice that religion any longer the need to purge our less-than-perfect thoughts is likely so ingrained in us that it will always be there.

But I recognize that you who are reading this probably also feel that need to purge those thoughts, and perhaps this is why this blogosphere is so crazy important to us.

So thank you, members of Hopeful Parents, my personal friends, and family readers. (Well, the two family members who actually know about this blog!) You are my confessional and without you I know this journey would be a hell of a lot more difficult than it already is.

Mama Deb does a little too much reconciliation at This Is My New Normal.

How Do You Make Things...Uh...More Normal?

2010-07-03T09:15:00.000-07:00

Yesterday we all played hooky; the other half from work, M from summer school and ABA, me from, well, driving M to and from summer school!

The boys had been so anxious to see Toy Story 3, so we made plans to go to the first showing of the day.

Going to watch movies in the theater used to be one of our only activities that we could do as a family and know that everything would go smoothly. However, with the upswing in verbal self-stimulation M has grown into over the past year, even that has turned into a shaky event.

I'd mentioned not too long ago about seeing Shrek 4 at an AMC sensory-friendly showing. (The next one is July 17th at 10 am, 'Despicable Me,' fyi) It was the most stress-free movie we'd seen in quite awhile since my kid most certainly wasn't the loudest of fidgety-est one in the room! I will definitely go back to one of those in the future, but the time and date isn't always possible for us to attend, as was the case with Toy Story 3.

We thought a general showing of Toy Story3 would go alright since these are some of M's very favorite Disney characters. And it did go alright for the first hour, despite having to turn off our own feelings of how someone should appropriately eat their popcorn when in public. (ahem.) But after that, you could tell that despite him being interested in what was going on on the screen, his body was winning out in its war to make him squirm and make constant guttural sounds. (Thank you person who brought small infant into the theater...your baby's constant crying helped drown out most of my son's sounds--woohoo!) Inevitably once this movement and sound cacophony begins, he will progress to doing his signature move--he starts getting this silly smile on his face, leans into you as though he wants to interact or play wrestle, and then escalates it to an uncontrollable frenzy of sound and motion that generally ends with you attempting to get his solid 60 lbs. unstuck from you, his nails from clawing into your wrists, and for him to stop make the sound that honestly has started to make me shut down each and every time I hear it since nine times out of 10 it leads to a very frustrating moment.

The other half was the one to take the brunt of this display this time, and since he was not in perfect M-handling mode, I could tell that he was not dealing with it well. They left to watch in the wings a couple of times and came back to have M slip back into the same mode only minutes later.

I finally decided to take over knowing I'd receive more of the same. I kept hoping that he'd just get his shit together a tiny bit since we were only about 15 minutes from the end of the movie. Even though these are kids' films, I still don't like missing the ending, dammit! :)

But, alas, we missed the last five minutes of the movie when he just burst into tears. It was too much for him to be there, and his body couldn't handle it anymore. As much as I understand and sympathize with this, I still grieve for little B's experiences as well as for the other half and I.

I get tired of looking at all of our outings and thinking well, it was almost great. Now, I completely realize that B is responsible for plenty of spoiled outings as well. The child can't go on a walk without whining for you to carry him. But when a kid has looked forward to seeing a movie for so long...talked about it multiple times a day for weeks...I get sort of pissy when his brother puts his parents in a foul mood that ruins the happy mood we all felt on the way there.

So what do you, parents of children with special needs, do to make these rough outings leave less of an impression on you? Do you leave your child with a sitter so that your typical child can have more, well, typical outings?

B really, really wanted to go play video games with the other half, after the movie yesterday, so I told him that this weekend he should definitely take him to Chuck E. Cheese or someplace similar and I will stay home with M and take him for a walk. That way, both boys get to do something they enjoy without all the stress of the other one not being able to handle it. But is that fair to our family as a unit? Is that healthy to start doing things in such a divisive manner? I just don't know what the right answer is and wish that I didn't even have to ponder it.

One of B's best little buddies whose Mom I count as one of my closest friends here, is having a birthday party this afternoon. It's a backyard, family bbq, and I desperately want all of us to go. I want the other half to finally get to know the spouses of my close friends. I want to drink beers for hours on lawn chairs while our children play happily around us. But the reality of the situation is that if I do convince the other half to attend with M (he says he's in at this point, but we'll see), is that if M is snatching food from the table or other people's plates, if M has an embarrassing meltdown in front of the people we don't know, or--worst of all--M gets frustrated with one of the little kids and grabs them, I feel certain we will have to leave.

I would love to know how you all make outings more enjoyable and normal for your family. Please be sure to leave a comment to let us all know!

Nu Life Allergen-Free Foods

2010-06-26T10:06:00.000-07:00

We were fortunate enough to participate as a founding family for a wonderful new line of frozen foods for people with food allergies. I was beyond impressed by just how great tasting their products are!

Now that their web site is live, I strongly recommend you check them out!

My favorite products are the chicken pancakes and shepherd's pie. I just placed an order for both and am going to give their daiya cheese pizza a try as well.

Thank you, Nu Life!

http://www.nulifefoods.com/

La Da Di, La Di Da

2010-06-25T15:00:00.000-07:00

Time is passing me by, faster and faster as the days progress. I just realized that I--the one who was fairly anal retentive about this task--am over two years behind in uploading family photos from my laptop onto Snapfish. I used to have a system whereby every few months I'd upload to Snapfish, create a backup on cd, delete from my hard drive, and then print out my favorites for a chronological photo album. Sounds a little nutty probably, but I love going through those photos with the kids, reliving all of the hand-picked, happy moments.

I thought we were going to put this crazy-ass house of stairs on the market 1.5 years ago and move back to the mother ship. I really, truly did. And in an effort to get it 'show-ready' I packed up all of my pictures in frames along with books that made the shelves look too cluttered and photo albums that took up too much space. They now reside in a lonely storage center where I haven't laid an eye on them in over a year. Oh, and the house still hasn't gone on the market...sigh.

We just got back from a 9-day vacation to the most beautiful place, Flathead Lake in Montana. We went with my best friend and her family for the second time. The first trip, three years ago, was so gloriously relaxing that I was chomping at the bit for this one to arrive. My black cloud decided to follow me, however, and I ended up sicker than I've been in a long time for the entire flipping trip. Woe is me. I know, I know. I have much to be grateful for, but sometimes I feel like I have really shitty luck.

Everyone had a fantastic time (well, everyone else), but I had lots of time to ponder where I am in life and how I am living it. The outcome? I'm not at all happy with the way I pass each day and know that I am not living up to my full potential. I am too-this and not-enough-that. I don't laugh like I used to. I fret over shit I don't need to fret over. I am on edge. I have a lump in my throat. I don't know where the heck the flip switched from 'then' to 'now,' but it's switched and sort of feels like the damn thing is stuck. I realized recently that I, the one who fostered dogs for six years and held that fact dearly as a big part of who I am, can't even stand to have my own two dogs underfoot anymore. I have not sung in public in nearly two years. I feel uneasy for the first time in my life when on horseback. Seriously, folks, these are three of the most important 'me-things' I've got, and I am losing sight of them all quickly.

One thing is for sure, I am no good parenting around other people beside my immediate family. Hell, I'm probably not even that good around them either! But my sensitivities and insecurities that have always been just beneath the surface are now open, festering wounds for all the world to see. Bandaids, please! Stat!

M did great overall on the trip. The boy truly loves it when we rent a vacation home, and it is a joy to witness. However, his food obsessions were in full-force during this trip, and that is a tough one when you are traveling with another family who also has two young children. M was constantly swiping food from the 9 month old's high chair or their three-year-old's plate. And most of it was gluten-containing, so that was an added hyperactive bonus for us all. I found myself so infuriated by this that I was constantly yelling, "M! NO!" when I caught him doing it, and naturally putting the rest of the group on edge. I guess that sometimes I feel like I'm the only one paying attention, though, and I'm sort of tired of it. I very much want to relinquish all concerns in that regard for a few days, but I can't.

The weather sucks currently where I live, and I know that plays a huge part in my melancholy. I love that word, by the way. "Melancholy." I saw a doctor of osteopathy a few weeks ago to check out cranial sacral therapy and to look into alternative/complementary means of aiding my overall health. After going through my lengthy history and coming to the part where I said that over the past couple of years I've definitely noticed an increase in anxiety and depression--but not really depression, she said, 'So you're saying you've noticed more melancholy?' And I paused for but a moment and said, 'Yes, I'd say that's exactly what it is!

I am taking my vitamins; mutli, omegas plus vitamin D3, calcium, and probiotics. I just ordered the Turbo Jam dvds hopefully to not waste them as I have with previously purchased workout videos. I have a sitter coming tonight after a week-long solo flight while the other half has been across the country on business. I am trying, and yet it does not seem to be enough. I need an attitude adjustment. I need a house that doesn't have so much negative energy floating around it. I need a school district I feel is more qualified to help M. Oh-wait--a bright spot! I adore our new ABA therapist, as does M, and am so grateful for that huge weight that has been lifted from my shoulders.

So it's not all bad, right? RIGHT?

And it's going to get better, right? RIGHT??

And maybe I'll blog more than once every two or three weeks, right?!

Let the sun shine!

Oh, To Know What M Would Ask Me!

2010-06-03T13:15:00.001-07:00

I thought this was really special...

I Need To Write More...

2010-06-01T18:44:00.000-07:00

...it's good for me to put my feelings down someplace other than inside my scrambled brain.
It's good for me to know that I have people reading who love me and my family or relate to our lives through their own.

So why have I been so absent lately?

I suppose it's that lack of THE word I've mentioned as being at the top of my 2010 mantra list: BALANCE. I swear to you, the word itself is magnified in volume in the world around me. I'll not hear a single word spoken from a person standing near me or from the tv, etc. but I always seem to hear it when someone mentions that word. It's as though it's enlightenment's way of teasing me; reaching out her arms to pull me in.

Balance, balance, balance. If only you can find the way to BE balanced, then the rest will fall into place.

Heck, one of my oldest friends and a reader of this blog (Hi, J!) recently started her own blog. Guess what it's called? Be Balanced Houston. See? It's everywhere!

It's amazing how when you're filled with a particular vibe, you discover that so many around you are in the exact same place. I've noticed quite a few friends who have slowed down the pace of their writing. And when they have sat down to share some thoughts, I can't get over how their topics of conversation are so on point with my own. I just read a blog I hadn't caught up on in a few weeks to find a guest blogger writing about being stuck, writing pros and cons lists for places to live. Then I read that the author of the blog was ready to move away from her lifelong home due to the dreary, cold weather. People...I was just thinking not an hour ago about writing out a pros and cons list to show the other half so we can once and for all decide where the hell our family should set down some roots. And not an hour before that (okay, and for a month before that as well) I was bitching and moaning about how flipping cold and gloomy my little coastal town is. Mama needs to put on some flipflops and a sundress and take in some vitamin D, people! Clearly the weather is currently at the root of my inability to achieve balance.

But we all know the main crux of the balance issue and that is my comfort level with where M is in life. It is so painfully clear that I will likely never achieve any sort of balance--not even that teeter-tottery sort where you're not sure if the person on the other side is going to hop off unexpectedly making you crash into the ground--until M is in a good place. Hell, even a better place. But I'm still making baby steps in the right direction.

I didn't spell it out in a recent post, but I will now: After nearly two years of fighting my insurance company, I finally succeeded in getting them to qualify M for 25 hours/week of in-home ABA (applied behavioral analysis) therapy. For those not in the know, this is HUGE, HUGE, HUGE!
Our amazing therapist began working with our little guy just over two weeks ago. We are currently only using about 16 hours/week because it is definitely a lot for him to go to school and continue to do work at home afterward. But there is so much general learning that is wrapped up beautifully in the art of play that he doesn't always realize it should be considered work. The weight lifted from my shoulders is immense. We had gotten into a real rut of doing nothing after school. It had become next to impossible for me or B to engage M in any activity. We couldn't even get him to sit still or quietly through a simple storybook. And forget any chance of going anywhere. No, sir, that ended close to year ago. I simply was not capable of many outings with both boys, by myself.

So as much as I hate to admit it (it's that Mama guilt thing of not adding up) this in-home therapy is the best thing we could have possibly hoped to have happened in the current position we're in. (i.e. no family support nearby, not-ideal school environment) I am so grateful for the bit of balance I am starting to achieve simply by not feeling guilty about my son pacing back and forth making verbal self-stimulatory sounds for hours and hours after school with me too fried to do much about it.

I am not a quitter, though I've not always pushed myself as hard to reach the finish line as I should have. So one day, maybe I'll find the right place to live. Maybe that place will have the right school for M. Maybe I'll figure out a way to get back to the me I used to know. (well, the good parts of me, that is) And maybe my family will plant some roots that spread widely and firmly; enough to balance us all. Enough to make us feel happiness on a more regular basis.

Sensory Friendly Films

2010-05-22T16:57:00.000-07:00

Have you heard of these?

AMC Theaters have beautifully dedicated a 10 am showing of new family releases to those who may have a bit more trouble sitting still or being quiet during a typical showing.
There are no previews to sit through; you go straight to the good stuff.
You can bring your own snacks for those on specific diets.
The house lights are up a bit and the sound is turned slightly down for those with sensory issues.

But best of all, the theater is full of families like my own and we respectfully don't 'shh!' when someone has the urge to yell out. We don't give them the evil eye when one child has a full blown tantrum in her father's arms. And we tell the Mom whose had to scoot past us four times to not apologize for having to chase down her little guy again.

Going to the movies has always been one of the preferred outings for our family...one of the few that we always felt sure M would tolerate. About six months ago, something changed and M is no longer able to sit quietly in a theater, no matter how much of his beloved popcorn we have on hand for him.

The other half is out of town this weekend and when that happens, I am truly at a loss as to what activities I can handle with both kids by myself. I had heard about these sensory films but never attended one since the nearest theater is about 30 miles away.

I decided to suck it up and make the trek to the theater, hoping the effort would not be wasted. It wasn't! M had a few 'moments,' but even those seemed to be lessened. A sensory-friendly setting and a less worried Mama were the winning combination that allowed us to successfully enjoy the entire 'Shrek Forever' movie without the help of the other half, and without having to leave early. Hurray for Sensory Friendly Films and hurray for AMC Theaters!

*Note to self: When you do have success like we did this morning, try not to push it by taking the kids shopping afterward.

One trip to AMC Theaters = success.
One trip to World Market afterward = colossal failure. Point noted.

My New Religion

2010-05-13T11:12:00.000-07:00

Can sea glass hunting be considered a religion? And if so, can the beach be considered a church? Because if they can, sign me up! I'm ready to join!

Thank you all for your responses on my last post about sea glass. I have to admit that I wrote that way too late at night with a deadline looming and a definite loss for subject matter or writing ability. I have simply been drawing blanks when it comes to ideas of what to write about because I feel like I am just saying the same ol' thing over and over again...and who wants to read that crap each day?!

I am currently on hour three of a six-hour stint of total and complete me-ness. M is at school, and the other half and B are back on the mother ship. (For my mother ship friends, I did come to town quite briefly to say goodbye to my great uncle who is ailing. Would've called, but we were a comedy of errors in that B got a puke bug and vomited in the in-laws van, M soaked-and I mean SOAKED-through an overnight diaper all over my mother-in-law's mattress, and the other half sustained some sort of heel injury during a soccer game and ended up on crutches. It was an interesting trip and I was quite ready to come home!)

I dropped M at school this morning and excitedly drove straight to my secret sea glass spot. I realize it's not entirely a secret, but on weekdays it seems that way to me, and that makes me giddy beyond belief. I discovered that if I go south instead of north on my beach, I get to be daring and rebellious and leap from slippery rock to slippery rock to a part of the coast most don't realize you can access. The seals are in pupping season and are lounging on the rocks out in the water and I am cautious and respectful of their presence. Last week even with my awareness, I suddenly came upon three small seals...what appeared to be a Mom and two pups. (Though I believe they generally only have one pup at a time??) They were the color of sand, not the typical gray-black of the harbor seals we generally see,(the adults) and the mother and one of the two pups were clearly languishing. I stepped back so as to not cause them any further stress, but I admit that I could not walk entirely away very quickly; I felt this connection to this threesome and thought for a long pause about the odd beauty of the scene and the bonds of mother and child. The second pup that did not seem to be in bad shape kept looking at me, as though it felt comforted by my presence. I cried for these three seals and cursed nature for their demise...or was I cursing nature for my own feelings of loss? Probably both.

Fast forward one week later to today...I wondered if I'd come upon the three seals again or if the tide would have washed them away. As I walked closer to the same rock I saw them near last, I noticed one small figure lying in the sand and assumed it to be the remains of one of the pups. As I got closer, I recognized it to be the one that was strongest...and it raised its head and yawned the most adorable seal yawn...it was alive!! But how was it alive? Who was caring for it? I am most aware that seal pups are often left on the beach while their mothers forage in the sea. But I'd been so sure that this pup was with the larger seal I'd seen last week. I considered whether I should call marine rescue or not and continued on my way down the beach. Quite a ways down I could hear the other seals calling to one another and turned to see a large, beautiful female make its way to the pup. I'd see on my walk back that she had in fact moved her baby a bit closer to the rock for added concealment. I ended my morning with two rare pieces of glass: one bright pink and one yellow with a fleur de lis, and a feeling of happiness to know that the baby seal was being cared for after all. It was the most beautiful kind of morning I could have asked for!

*Please note that I know not to bother this pup in any way so as to not truly make its mother abandon it!!*

Sea Glass

2010-05-06T08:46:00.000-07:00

I posted the following over at Hopeful Parents today. Please be sure to check out this great community...and become a fan on facebook too!

I recently took up a new hobby and as odd as it sounds, I find it just about as fulfilling as any other hobby I've test driven through the years. It perfectly fits where I am in life and my need for something calming. The best part about it is that it is fulfilling both with and without my family, and is one of the very few activities we can count on M being okay with us doing together as a family.

We are fortunate to live in a beautiful, coastal town. Less than a mile from our home is the biggest sensory-happy sandbox a little guy like M could ever ask for. So instead of worrying about whether or not we'll be bothering other people at a movie theater or having to cut short a visit to a local museum, we can safely and happily load up a blanket and a bucket and head to the beach for hours.

M is quite happy plopping down as soon as he gets to the sand, leaving me to comb the beach for gems that-before the sea churns them about for years, decades, or if you're lucky, a century-were simply considered littered pieces of glass.

I was fortunate to have 90 minutes of solace to myself last week when I went sea glass hunting all.by.myself. It was heaven!

As I tuned out the rest of the world and focused on the sand, I thought of how much symbolism there is in this new hobby I have chosen. It sounds perfectly cheesy; sort of like those posters you can by at Michael's that say 'Everything I needed to learn I learned in Kindergarten.' But they're there, and they fit with the new normal I am living as a parent of a child with severe special needs.

So without further ado, may I present to you "Everything I need to know about parenting a child with autism I learned from sea glass hunting:"

1. Often the best glass can be found after a tumultuous storm at sea.

2. Sometimes you can't see the best piece of glass even when it's right in front of you.

3. Even though your eyes tell you that you aren't actually looking at a piece of sea glass, sometimes your brain won't believe it until you walk over to it, touch it, see it closely.

4. The biggest pieces of sea glass are found in the most remote beaches where others don't dare to walk.

5. You can rarely find sea glass until the tides are low.

6. When you find that rare piece in red or cobalt blue, it makes you want to keep looking all that much more.

7. Even the seemingly smallest pieces of sea glass can be made into something beautiful.

8. Not everyone understands why you would want to spend so much time searching for something they don't see value in.

9. Those that do get it are wonderfully special friends.

10. Sea glass hunting does not require any words.

Transition

2010-05-04T16:02:00.000-07:00

I have been in my own self-imposed blogless world. I haven't read any blogs. I haven't written for any blogs. I feel flat. Not the kind of flat Matt Stephens said I was when I secretly listened in on a three-way call as his friend asked him if he liked me in the 8th grade. (I've bloomed Matt! I've finally bloomed!)

But the kind of flat where there's not a whole lot of emotion pulsating through your body and you're just sort of floating through your days not really caring about them one way or another.

This isn't actually the worst thing in the world either. It sort of clears my head from all the intense worrying and sadness to take a moment to think about how I can move to the other side: joy and living. Or 'L-I-V-I-N' as a certain Dazed and Confused character so profoundly spelled it.

My friend, R, came to visit in January and one thing she said to me has replayed in my head at least a hundred times sine she left...she told me that she was worried about me most because I didn't seem to get any pleasure out of life. It stung at first to hear those words; but it stung because she was dead on with her observation.

For those of you who know me best, I have always lived life and had as much fun as I could. I think fun Debbie is still within me some place. She likes to make appearances on increasingly rare occasions. (Get me to a karaoke bar and watch me go!) So how do we as mothers--forget the special needs component--get some of that pleasure back into our lives? Please share your thoughts in the comments section. I need the inspiration.

I have more to say, but I think this is an appropriate place to stop.

Don't Worry...

2010-04-27T13:31:00.000-07:00

...M is happy, engaged with his aides, his teacher likes him and he lights up when he sees her, and he is progressing. They don't see the regression that I am concerned about. They suggest we go for a more 'integrated' approach to connect skills our family needs to see at home with those he learns at school.

All is good.

What exactly is it I'm fighting for? Even I am starting to get confused.

Oh, Right...THERE'S The Anxiety!

2010-04-27T10:58:00.000-07:00

I knew it had to be hiding in there somewhere!

I guess the reason I didn't feel it yesterday was because my brain knew that there was no way in hell the school district would actually do what they said they would...call me back with information about MY CHILD.

Yep, I waited here all flipping afternoon for a phone call. I even left two voicemails during that time. Nothing. Nada. Zilch.

I sent an email first thing this morning letting them know my disappointment and today's availability. Still...nothing. You'd think they would have gotten to work this morning, listened to my voicemails and thought, 'Shoot! That's really crappy of us to have not called her yesterday when we said we would. We should make that our top priority today.'

Alas, no, these people do not operate this way. They have zero integrity or compassion.

And so, here I wait, with a lump in my throat and the knowledge that I'm probably going to start crying at any moment. I've cleaned my house. I have drunk way too many cups of coffee. I'm listening to some really great music. And yet, all I care about right now is hearing what my son's future is; what my family's future is.

Please call, dammit. Please.

Good things come to those who wait. Good things come to those who wait. Good things come to those who wait. Good things come to those who wait....

Light A Candle, Won't Ya?

2010-04-26T10:41:00.000-07:00

After 1:30 pm Pacific time today, I am supposed to hear back from our district.
I am trying not to be too anxious about the impending call, so B and I are on our way to the beach for a little distraction!

I am also trying not to get my hopes up very high...maybe that way I'll be pleasantly surprised?

Either way, please send us some good thoughts and good luck this afternoon. A lot hinges on this call.

Thanks.

Planning For The Future For Your Child With Special Needs

2010-04-24T10:10:00.000-07:00

My head is filled with pollen and my mood is a bit lackluster these days. I've thought about blogging, but know that it would be more of the blah, blah, blah, hoping M will finally get what he needs, blah, blah, blah, hate waiting and playing bureaucratic games, blah, blah, blah...

So instead, I leave you with an excerpt from a recent post I read by the ever-amazing writer and autism advocate, Squid. Family planning is something the other half and I have vastly different opinions on, thus we spin our wheels, never actually getting anything accomplished. And, by the way, my opinion is right in case you were wondering! Read on and then click on over to her site for the rest of this valuable information...

A lot of us like to put our hands over our ears and shout LA LA LA LA LA when asked to think about formulating a Life Care Plan, because that means we're envisioning our children with special needs having a future without us at their side.

But denial and avoidance does both us and our children a disservice. The time to think about planning for our children's future is now -- the earlier we start, the more comprehensive our planning will be. And the steps involved are both more involved yet less daunting than you may think.

Read more here.

Say What You Mean To Say

2010-04-15T14:50:00.000-07:00

One of the greatest things autism has taught me is how dear those around us who assist us in something seemingly small, offer a warm smile, or go the extra mile to make our lives a bit easier are.

I'm not saying I didn't take note of the good people around me before, I'm saying that maybe I didn't speak up as I should have to let them know that I appreciate them.

Many of us are not entirely comfortable with words or gestures of gratitude; myself included. Is it that we as a society have gotten so far away from helping one another live life together, as a community, as a unit, that when we do work on each others behalf we almost feel surprised? I'm not sure, but I know that I need you--each and every one of you--to help me walk through this crazy life. I will try not to lean too hard on you, and I will try to lift you up when you need me. But most of all, I, because of autism, will be more inclined to let you know just how much your lifting up means to me.

After much difficulty with my insurance company, I finally was connected to a person who gave a damn. (and had an ounce of work ethic, I must also add) She helped me accomplish something I'd tried for nearly two years to do. Two years worth of hours of phone calls, transfers to rude and incompetent representatives, mysteriously lost or 'not entered' information about previous hours worth of calls. And tears. Lots and lots of tears.

And, so, because this representative finally did the thing that no other seemed to be able to do, I made damned sure that I asked to speak to her supervisor to tell him so. She humbly obliged a phone transfer and thanked me.
It took 30 seconds for me to do that, and I hope that in turn she eventually gets a pay raise or a promotion. You never know...it could be something so seemingly small that assists her in life a bit too.

So thank you--all of you--for what you do for my family by reading this blog and telling others about the trials and tribulations of life with autism. Thank you for emailing me and calling me to let me know you love me and are thinking of me. Thank you for praying for us, thank you for lighting a candle for us. Thank you for being kind to other families living with autism because you care about mine. Thank you.

Things You Wouldn't Want To Have Happen In Front Of A Social Worker #673 -or- Look! My Kid Has An Emerging Skill!

2010-04-09T11:06:00.000-07:00

Are there contests out there for longest, most rambling post titles? I'm certain this one would win if there are.

Sorry I haven't updated in awhile. It wouldn't be pretty if I did. So instead, I will leave you with a short and sweet post about an event that occurred yesterday and was so NOT funny that it kind of WAS funny.

M receives some services through a local non-profit agency. In order to qualify for their respite program, they require you to also apply for the state's in-home social services program. There's lots of attempting to pass the buck going on in this great state. Some of it I totally understand, other things become a waste of everyone's time and taxpayer money.

Anyhoo...we finally had our (knowingly unnecessary) meeting with a state social worker yesterday. She asked me about 90 minutes worth of questions that we both knew were a complete waste of her time since I would never qualify to be paid as M's caretaker. (I did not leave a job to care for him; I have always been a stay at home Mom to my kids)

The other half happened to be working from home as well and was sitting in a room adjacent to the one we were in, eating his lunch. Between those two rooms is our open kitchen. M was doing his typical I-can't-sit-in-one-place wandering which has of late lead to banana peels getting bitten, onions sampled, and any leftover food B may have left at the kitchen table being swiped. But never before, I mean NEVER BEFORE, has M ever retrieved anything from one of our drawers or cabinets.

I recently tried teaching M that one kitchen drawer held his beloved chew tubes in it. M is an incessant chewer (come take a look at our dvd collection-you wouldn't believe it!) and if his 'chewy' falls to the floor, he likely won't take the time to locate it again, but will move on to whatever else is closest to him. So I thought it would be good to show him where he can find them on his own. Backfire!

So here I am talking to a STATE SOCIAL WORKER, when she looks toward the kitchen and says, 'OHMYGOSH!' I quickly turn to see M sauntering toward the other half with a flipping 6-inch long BUTCHER KNIFE in his hand that he is sort of flicking back and forth like he would his chewy...and then he actually put the handle in his mouth as he was holding onto the blade part.

Um. Yeah.

Naturally I yelled to the other half, 'OTHER HALF!! M HAS A KNIFE!!!' No harm was done and the other half tried to make a not-very-funny joke that the good news was the knife was ridiculously dull.

As for me and my make-jokes-when-I'm-uncomfortable personality, I tried to quell the situation by saying, 'Hey, look! M just showed us an emerging skill...opening up drawers!'

We were very fortunate that this particular social worker had the best personality of any social worker I have met thus far. She was actually really funny about the whole event, but also quite seriously implored us to please put locks on our drawers now. I mentioned that I hoped she didn't think we were the worst parents in the world, and she told me, 'No, I have seen those.' That made me feel better and saddened all at once.

So there is your wow-I-feel-much-better-about-my-own-parenting-skills story of the day!

The Boy He Once Was

2010-04-01T15:12:00.000-07:00

I am preparing for my meeting. I leave in one hour and hope I do not allow myself to get overly emotional. I am bringing a copy of goals that were made for M two months before we moved away from the mother ship; just over two years ago. My, how things have changed in that time. On this same goal sheet are progress notes like the following: 'The student has made good progress in increasing interaction with peers. He interacts in play with peers for 1-2 minutes. He is showing an increased interest in his peers. Often greets them by name. Smiles at them, touches them, laughs when they laugh, approaches them, and verbalizes to them. He inconsistently identifies at least 7 body parts. Attention to task is brief with frequent verbal, visual, and physical redirection. He attends well to singing and story time. He will walk in line holding an adult's hand.'

Or this...

'The student has made good progress in identifying colors, but performance is inconsistent. He does not identify his name, but verbally spells his name leaving out the 'l.' He rote counts to 5 consistently and to 13 at times. He identifies the number 5 and circle shapes.'

So, these things may not sound like a lot, but oh, what we would give to hear him say another child's name, to laugh when they laugh, to almost spell his name verbally, to name ANY body parts or count ANY numbers! This report was just two years ago...two years in which his and our world has crumbled and gone backwards, instead of progressing.

I also found a few photos that one of his old teachers had sent of him interacting with his peers. He was so happy back then. These are smiles we don't generally see anymore, and that in itself is a very difficult thing to stomach.

I'll leave you with photos of him and his classmates from the mother ship, as well as a photo with his best buddy and two teachers when he visited them five months after we left. Damn...

Look at him participating in this activity with his classmates!

Here he is with two typically developing peers that were in his preschool class. The blonde, C, was one of his favorites. He would call her name as we got to school, beam with happiness, and then enter school while tightly gripping her hand...not once looking back at me for reassurance.

A visit back home where his amazing teachers took time out of their personal lives just to come see him...imagine that?! Oh, what I would give to have these two amazing women back in his life again. These are true teachers who go above and beyond to help their students achieve their goals. I love you, B & G! Thank you for a wonderful two years!

Ohmmmmmmm......

2010-03-31T12:22:00.000-07:00

Alright, deep breath, Deb. Paranoia will destroy ya, eh?!

If in fact someone from my school district is reading this blog, I hope that she understands just how much I love my kid, how much he has regressed since we moved here, and how the right thing to do is to put him in an appropriate environment where he has some shot at achieving goals and being able to live a reasonably independent life. I completely get that funds are tight to non-existent. I am sorry for that and the domino effect of problems that comes with it. But a child is in an inappropriate, HARMFUL situation here, and something needed to be done about it...yesterday.

I may have noted this in a previous post, but a very well-respected school director told me last year in dead seriousness, 'Deb, I don't mean to scare you, but there is a very real urgency to getting your child out of the situation he is currently in.'

This is a person who knows. Someone with decades and decades worth of experience in teaching and advocating for children on the spectrum. She has seen so many of our kids damaged by inappropriate teaching who have ended up--finally, when it was nearly too late--at her schools. Why must we wait until a child gets so far down the wrong path behaviorally before our schools decide it is time to do something about it?

I was telling a friend today about the boy M used to be...the boy everyone called 'an old soul,' 'a seer,' 'intuitive and wise,' 'sweet and gentle.'
We haven't quite taken the full leap off that cliff to the negative behaviors I have sadly heard other parents talk about; he scratches those he works closest with, and fortunately that is about it at this point. He does not self-harm, he does not head butt. He does not throw things. Yes, for this we are very lucky. But since we haven't gotten there yet, isn't now the very best time to take all measures to make sure those things DON'T happen?

But beyond that, let's talk about teacher accountability. If you've got a teacher who is blatantly prejudiced toward a student in her classroom who is significantly lower-functioning from the peers in his classroom...to the point that he must sit alone at a table with his aide and not participate in most class activities...to the point where she 'forgets' to put things in his backpack or tell him about fun things the other students get to do...to the point she 'suggests' he not attend a day at special olympics...well, do I need to continue on as to why he does not belong in this classroom? And shame on you, teacher, for being so horridly insensitive.

If I had the money to send my son to the schools he needs to attend, I would in a heartbeat. But I don't. I don't know anyone with a similar case who does. So I have to rely on the school district to do the right thing and place my child there for me..because that is what FAPE (free and APPROPRIATE education) is in place to do.

So, with that...I will see you tomorrow, district employee. I hope we have a productive discussion about M's future.

Hmmm...

2010-03-29T15:57:00.000-07:00

It would appear I need to take a break from this blog or censor my thoughts even more than I already do. Is it possible that one of you readers out there has a connection to my school district? Someone operating a Mac from Sunnyvale, perhaps? Because oddly enough, I just got a call from our director who asked me (rather peculiarly) if I'd received her message from earlier today about a meeting time. And she addressed me by saying, 'Is this Deb?' NOT Debbie. NOT typical. Seems a little too coincidental that within moments of my post about her not returning my calls (which I have since deleted) she would call me to check if I'd received her earlier message, don't you think?

In the spirit of my last post: feck, feck, feck. I am not pleased.

Edited to add: Hey, Sunnyvale...you've been on my site for nearly an hour now and read 27 different pages. I would love to think that you are a parent, like me, dealing with the trials and tribulations of parenting a child with autism. Unfortunately, I am feeling really skeptical and quite possibly a little paranoid at this moment since this involves MY CHILD and his well-being. Whoever you are, I would love it if you'd email me personally: dtolany@hotmail.com
Thanks a bunch!

Team Sports

2010-03-27T10:12:00.000-07:00

My is nearing seven years of age. This is the time when he should be signing up for t-ball, joining a soccer team, causing his Mom to make corny jokes about being his chauffeur or putting cheesy bumper stickers on my minivan about being a soccer Mom. (I kid...I would NEVER put a soccer Mom bumper sticker on my minivan. But then again, I also said I'd never get a flipping minivan. Uh-oh.) But, alas, this did not seem to be in his cards...until now.

Our local little league has decided to start a Challenger league...all ages and abilities encouraged to join! Free hats and shirts! Buddy volunteers galore!

I have visions of the other half, B and I cheering from the stands. Of catching a glimpse of that now rare smile of pure, uninhibited joy that M shows when he is really, truly happy. Of him actually running with his buddy and rounding first base; or better yet, touching home plate. Something to do as a family on a Sunday afternoon. Something that makes us bond and feel happy, rather than one that make us feel frustrated and homebound.

And then there are the other visions...the ones that are quite probable. The ones where M hates challenger baseball and refuses to take his buddies hand or move his legs. Or worse, scratches an innocent volunteer when they try to encourage him to play.

We start tomorrow. The other half is out of town, so it will be just B and I. Please don't let this be a disappointment! Please don't let this be another thing that I have such high hopes for and the other half tells me, 'See? I knew this was a bad idea.'

Please help me to not cry in front of the other families from pride or letdown, as I am so prone to do. (or as I'm doing now because I'm a nutcase who is also totally hormonal) I know that these are our people and they will understand, but I want to hold my head high with either outcome and say nothing more than, 'at least I tried.'

And then...we start special olympics swim lessons on Tuesday. And these are free, too.

And soon, I can hopefully say, 'Yes, my son plays sports, too. He swims and plays baseball. And he loves it.'

My Kid Is Special

2010-03-25T14:41:00.000-07:00

Oh, things keep getting weirder, sadder, more blatant, and even a bit funny, in a really warped sort of way.

I had my parent/teacher conference last Friday to discuss M and his 'progress.'

The whole team was there and you could tell that we were all a bit tense, wondering which way this thing was going to go. I was mad at myself toward the end when I realized I'd been doing this goofy, repetitive rubbing of my ring finger thing. I hate that people who are supposed to be helping my child can make me nervous like that.

Everyone kept it low-key. This wasn't an official IEP meeting. But I did take a very intended jab at M's teacher at the end when I asked her if I was correct in having seen some of the kids in his class bringing in things for show and tell recently. When she told me I had, I said, 'Weird. No one told M or I about that. Even though he can't talk about an item, per se, it sure would be a nice exercise in INCLUSION!'

In what I now can tell is a very put-on voice, she told me that 'of course, he can participate in show and tell!' Would we like to start on Monday? Any day is fine except Tuesdays! As though all parents need to do to have their kids included in classroom-wide activities is to just come out and ask!

This, of course, happened right after she informed me that next Thursday (today) was the county-wide Special Olympics basketball day in a town about 30 minutes from our own. She made sure to mention that though he attended last year and seemed to do fine, he might 'get more out of his day' if he stayed at the school with his new paraprofessionals because it's just so 'crazy and overstimulating' there. I told her 'fine,' because who wants their kid to go where he's clearly not wanted? I probably should have insisted that I go with him so that he could be INCLUDED, but I didn't think about that until after the fact.

Here's where I was able to laugh about even more blatant, sad, exclusion of my child...when I told the other half about it, he paused for a moment to process what I'd said and replied with, 'Wait a sec. So you're telling me that our kid is too special for Special Olympics?'

HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA!

This was so bizarrely funny that I had to share it with my great friend, R, mother of M's best buddy back on the mother ship. We have shared some insanely funny stories in this vain with one another through the years. It's so good to have someone you can laugh about these things with, as completely effed up as they sometimes are. Her response was that I definitely need to get a t-shirt printed up with the saying, 'My child is too special for Special Olympics' on it. Poor Eunice Shriver is probably rolling in her grave over this one!

I just got home from picking M up from school and asked his aide how his day in exile went. She told me that he was pretty aggressive all day, but that maybe it was because they spent it in a new classroom...the typical 1st grade class. Now, I am all for inclusion, but let's not push the poor kid into an inclusive situation when he's pretty much just being set up to fail. For him, recess, music, art, etc. might work okay, but not for the full, academic day. So instead of M being with a huge group of special needs kids where he wouldn't have been weird, annoying or disruptive if he'd been aggressive or overly vocal, we have instead allowed him to 'get more out of his day' by putting him in a class with a bunch of typical kids who have a much easier time of focusing and remaining quiet. Gee, I wonder what they all thought when he lashed out at his aides during the day? I'm guessing they thought a lot more about it than his buddies at Special Olympics would have, and that pisses me off royally.

I left a message with the special education director for a face to face meeting. I'm so sick of this crap and realize that even with excellent new aides from a reputable outside agency, M is NEVER going to make any progress as long as he is in such a hateful environment.

A Quick EEG Update

2010-03-22T22:29:00.000-07:00

This day was T-I-R-I-N-G, to say the least, but we got through it.
I received the results from the neurologist this afternoon and was told that there were no obvious signs of Landau Kleffner syndrome.
He does, however, have what he called a 'rare right wave spike on the right frontal lobe that is consistent with children who have autism.' Haven't done any research on this yet, but he said it puts him at a higher risk for one day having seizures. At this point, however, he feels he still has a good chance of NOT having seizures. Not sure what science leads him to feel that way, but this is what he said.

The other half and I will make a follow up appointment with him soon to discuss the various medications available to kids like M and to learn more about their pros and cons.

Stay tuned...

It's 4 am...Do You Know Where Your Child Is?

2010-03-22T04:49:00.000-07:00

I think only you east coasters will remember the on-air PSA that ran in the 70s and early 80s...

Anyhow, it is 4:30 in the friggin' a.m. and I'm dressed and attempting to be 'perky' with my poor, sweet M who can't for the life of him understand why the hell we're watching 'The Little Bear' movie at this ungodly hour. Waking him was not pretty, and I've got a couple of fingernail marks in my arm to prove it. Of course, this time, I totally understand why he dug his nails into me in frustration. I'd be frustrated too if I'd been kept awake until midnight and only allowed to sleep for four hours after that before someone rudely awakened me in the dead of the night.

And what's worse is that I can't even give the kid food or water to attempt to get his systems working, so I've gotten up from the couch about four times already during typing to prop his body upright and encourage his eyes awake.

Alright, 'Little Bear's Canadian accent was too calming for him and we've now switched to a little more upbeat programming. And now I've opened the windows in the hopes that the cool air will awaken him. And now I've removed the cozy blanket that he keeps pulling over him. Did I mention yet that this sucks?

We will leave by 6 a.m. to drive an hour to a hospital where they'll sedate M and perform an EEG. I realized I'd forgotten to update everyone on the results of the MRI that we did nearly two weeks ago. Normal. His brain looked...'normal.'
Metabolic panels, thyroid function, enzyme count and white blood cells....all good.

I have my own goofy reasoning for being glad that the MRI came back normal and for hoping that the EEG shows seizures that we aren't aware of M having. I want something fixable to be at the root of his regression. I want someone to say, 'here, take this pill and you'll get some of your kid back.'
I'm not making bets that this will happen, but it sure would be nice.

I think once we are on the other side of this test, the other half and I will likely start our newest, new normal in this life of autism. We will have to have conversations about things we don't necessarily like to talk about. And we will have to figure out how best to move forward in a way that is beneficial to each member of our family. We all love each other most of all and need to keep that in the forefront of our conversation. We are a unit, and right now our cogs are ridiculously out of sync which isn't healthy or happy for anyone.

Oh, good. It's almost 5 a.m. Almost time to make a pot of coffee!

Wish us luck...

How Much Is Enough?

2010-03-18T14:41:00.000-07:00

It's been rough around here again. Damn. I hate even typing that. I totally get whining mother of the past two years.
I almost blogged last night after a very raw and real, holy-shit-I'm-losing-it, kind of evening that ended with a giant bowl of Ben & Jerry's Half Baked ice cream. (Thank you, Ben & Jerry. It was just what the doctor ordered!)
M has been a stimmy mess. And the stims are vocal. And they are LOUD. So basically his entire time at home, post-school, is spent flapping his arms, pacing around the room, and escalating his voice with total gibberish and the occasional recognizable word. (His latest is 'Tunnnnnellll!' a word we always all yell when passing through a tunnel)
I wish I could blame all of this frustrating behavior on gluten infractions (M has been gluten-free for two years) and have them magically disappear once the gluten is out of his system, but let's face it, gluten or not, he is still...severely autistic.

But here's the frustrating and confusing thing about the gluten...it's been B's 'fault' the past two days that M has eaten gluten. We've entered a little phase whereby B does not sit through an entire meal without getting up multiple times. I have to admit that this does not set well with me. I am a firm believer in sitting at the table until your done. I know that I'm going to have to instill this in him a bit more by actually taking his food when he leaves the table. It's not really fair to blame a three-year-old for his brother's issues, which makes me feel really terrible when I tell him to please pay attention when he's got bread or pasta on his plate. How the hell is he supposed to remember that sort of stuff?

And onto food in general...the food obsession thing has gotten OUT.OF.CONTROL. Not only does M spend his time fidgeting and vocally stimming when he is home, he also spends it hunting for food. I have to know where he is at all times because if I don't, I'll likely find him taking a bite out of a tomato (which he doesn't like) or biting into a banana peel or even an onion. I'm at a loss as to where to store my non-refrigerated fruits and veggies so that they are out of his reach. The boy is crafty. And if I make myself something to eat and turn my back for a second, or go to get a glass of water to go with it, I will inevitably turn around and have missed M in stealth mode, sticking his fingers in it about to take a bite.

Cooking is no longer a fun or relaxing thing to do. I spend way too much time herding him away from things I have just chopped, and worse, from sticking his hands into pans on top of the stove. He never used to do this!! What the hell is going on?

I know that this concern over gluten infractions is why doctors and nutritionists suggest that an entire family go on the diet together. I get it, I really do. I also know that it would probably be very beneficial for all of us to be gluten-free.
But you know what? I'm fucking tired of it. I'm tired of doing a thing that I don't see 'wow-me' results from. Yes, he turns into a hyperactive maniac when he gets a bit of gluten accidentally. BUT HE IS STILL SEVERELY AUTISTIC. Yes, his poop is more formed since we started the diet. BUT HE HAS SINCE REGRESSED TO BECOME SEVERELY AUTISTIC.

And then there are the supplements. I am a big believer in vitamins, always have been. Blood tests have shown me that M is low on iron, calcium, magnesium and vitamin D...this part is not hocus pocus, it is medically there in front of me to see as necessary. But you know what...even if I try to bolster all of those things that the lab tests show me he is lacking...wait for it...HE'S STILL SEVERELY AUTISTIC.

When we were on the plane home from Kauai I lost my cell phone for a bit. It turns out, I'd set it on my chair next to M and then gotten up to grab something for B. M had grabbed the phone and somehow hid it (not intentionally) underneath him. I was so worried that I'd lost the thing that the other half even had the flight attendant come over with a flashlight. The attendant asked me to tell her when I found it, so I did. It's hard to explain why your child didn't just tell you he had your phone, so I briefly explained the situation by saying that my son is 'non-verbal.' Afterward, the other half looked at me a bit offended and said, 'M isn't non-verbal! He talks!' It hurt my heart because I know that this is what he wants to believe, and here I am getting into that 'realistic' stage with him still lagging just behind me. M does not express his needs. Yes, there are a few recognizable words, but you know what? HE IS NON-VERBAL!

Clearly all of this has me worked up. I want so desperately to help my beautiful child and to bring him more into my world. It makes me feel horrid that our afternoons are spent annoyed at him and on edge because there is never a second without movement or sound. (funny...I just typed that and he is actually sitting still with his chew tube, barely making a sound right now. Oh, wait...never mind. There he goes again! I swear, that really just happened that way!)
And poor B, the world's most compassionate and patient child has even started to get bothered by M's sounds. He actually said to him the other day, 'M! Stop making your sounds! You need to say things like I want to play with you, or be my friend!' I told him he was breaking my heart--and he was--but being the funny boy he is, now every time he tells M to say real words he immediately turns to me and says, 'Am I breaking your heart, Mom?' Oh, that boy....!

Our Dan! doctor wants us to try an elimination diet next. He is without answers too and freely admits that our next step may need to be medication. Though I was at first open to the idea of an elimination diet, I am now at the point of saying, 'screw it.' Screw the diet. Screw the vitamins. Screw the no-prescribed-medications belief. We're all a bit miserable in each other's company at present, and this is just no way for a family to live.

I'll shut up now...and I may even get myself some more Half Baked ice cream.

Finding Your Spot

2010-03-08T07:53:00.000-08:00

This was one of the first things I posted when I started this blog in July, 2008. Back when I thought I'd use this space as a platform to be witty and flex my writing skills.

Laugh with me now, will you? BWAHAHAHAHAHAHAHAHAHAHAHA!

Duh...OF COURSE this was going to turn into a place where autism and parenting would prevail. Who was I kidding?

Anyhow, we have lived in Northern CA for nearly two years, and if you know me, you know that this is about the time that I start getting itchy feet and wondering where I'm supposed to go next. The longest I have lived in a house since probably 1992 is 26 months. I am not kidding.

So I took the 'Find Your Spot' quiz again and came up with similar results...a slew of locales in Oregon, this place that I sort of idealize in my head. I can't help but wonder if it's THE spot for my family. Better cost of living, better schools, more attainable/affordable private schools for autism, beautiful coasts and mountains, progressive people, etc. etc.

So where do you think the ideal life could be lived for your family? And let's gather some information here if you've got it...where are the best services for kids with autism? I have heard Washington State and Connecticut. What have you heard?

Looking forward to hearing what everyone has to say...

Good In This World

2010-03-06T11:00:00.000-08:00

I wrote the following for today's post at Hopeful Parents. Check out the amazing writers when you have a chance!

I wanted to share a story of a recent trip our entire family took to Kauai. It was a wonderful trip for the most part, that could have easily been overshadowed by the craziness that was our experience of trying to get home.

We had a red-eye flight booked and were nervous enough about the prospect of the kids only having five hours in which to get their night's sleep. When the flight was delayed until nearly midnight, we tried to put on a cheery face and make the best of it by returning to our resort for an impromptu, moonlit picnic on the beach where my youngest fell into a deep slumber on one of the lounge chairs.

Kids are so lucky to be able to fall asleep like that; tolerating transfers to and from rental cars, and even managing to stay asleep through security...and for the next four hours that we were trapped in the Kauai airport before they finally called 'uncle' and decided it was time to shuttle us all to a local resort...the same resort we'd been staying at for the five days prior.

My older son, M, has severe autism. This makes for an added layer of excitement when traveling. Oddly enough, he did much better on the long flight to Hawaii than his typically developing little brother did; a fact we commended him on many times throughout the trip. And to our surprise, he was a total champ with the flight's delay and even finally fell asleep in his chair as we waited--and waited--for the news on whether or not the mechanical problem they'd reported to us as we were literally a step away from boarding the plane, was going to be fixed or not.

I think all 130+ of us did a relatively good job of remaining calm and lighthearted through this annoying wait. My husband quietly chanted, 'Go, Sully!' after the captain told us he was a husband and father of five and a (chuckle) 'safety guy.' (Gosh, I hope all pilots are 'safety guys!) I mean, none of us wanted to fly over the Pacific ocean on a faulty plane...but there did come a point where we all realized we weren't getting on that plane that night, so why didn't the airline come to the same conclusion before 2:45 in the morning??

By this time, some people were getting restless. The not-very-customer-service-oriented airport workers didn't quite think their plan to get us to the hotel through very well. They decided to let the first class, platinum status, and people with special needs leave the gate area to collect their baggage first. Oddly enough, our family fit all three criteria...we were on our way to getting the hell out of there, finally!

But they didn't give us time to actually wait for our luggage on the carousel before they let all of the other people out too...and so, the free-for-all ensued as people rushed and pushed, attempting to grab their luggage before the rest of us so that they could get a better spot in line for the shuttle.

The other half and I were holding about 90 lbs. of sleeping children, two carry-ons, and pushing a cart with three pieces of luggage. Our backs hurt. We were tired. And when about 20 people...none with young, sleepy children, mind you...cut in front of all of us and refused to acknowledge the few passengers who were willing to stand up for what was right and tell them to get to the back of the line, I started to feel that burning in my throat I always feel when I get myself upset about people behaving unjustly and unkindly to their fellow humans.

M must have felt the unrest, too, because he woke up in the other half's arms at this point, very confused and upset by what was going on around him. The other half quickly wisked him to sit on the sidewalk away from the line as people stared unabashedly at him. Now the burning in my throat was turning into tears as I held back from screaming at these people, 'You have no idea what this amazing little boy has accomplished by holding it together for these past four hours!!' So instead of making my own scene, I decided to be proactive...I approached the airport employees and told them that my son with autism had done amazingly well thus far, as had the other small children patiently waiting at this ungodly hour with their families. I told them that I knew this situation wasn't their fault, but that they had to take control and allow the people with special needs and young children to get on that bus (wherever it was) before the rest of the passengers.

I took my place back in line and noticed a woman rushing over to the same airport employees. This same, kind-faced woman had been smiling at M much of the time we were in the waiting room. She asked the employees where the little boy with autism was, and they awkwardly pointed to M who was still wailing and confused with the other half. My husband came over to me after that, handed me M and took B in his place and said, 'This kind lady is going to take you and M to the hotel so that you can check in before everyone else gets there.'

I lost it. Totally, freaking bawled my eyes out, right then and there. In this crowd of people--many of whom couldn't give two shits about anyone but themselves--this woman made sure to help out someone she knew needed it. I gave her a huge hug as I attempted to collect myself and get us into her husband's car.

It turns out that this couple was from Texas--or the mother ship, as I refer to it. The place where I am from, and where my heart still longs for at times like these. Her husband is a traveling orthopedic surgeon and they were living on the island for a year. Nancy, the woman who 'saved' us, told me that she worked with kids with special needs for many years.

I gave them both enormous hugs--hugs that felt like I was hugging my own parents--and thanked them from the bottom of my heart for helping us out. M had gained his composure by this point, as had I, and we were able to check into our hotel room before the long line of passengers arrived.

I still can't recall the story without getting a little choked up. It sounds like such a small thing, but it was really an enormous gesture that helped restore my faith in humanity a tiny bit.

So, to Nancy & Dave of Cedar Hill, Texas...bless you. I hope you know how much your kindness meant to my family.

Nerves

2010-03-05T13:48:00.000-08:00

I am hesitant to post this today, but I think it will help me to hear some positive stories and to get a bit of good mojo in the works for me.

I have had some thyroid trouble since B was born. Though blood tests showed everything to be fine, I have not felt fine in several years. The tough thing about thyroid issues is that just about every symptom I have can be attributed to my daily stress. But something has continued to nag at me, telling me I needed to keep an eye on things.

I decided to make another appointment with an endocrinologist I saw nearly two years ago. I felt like I was dismissed a bit quickly the last time I saw her, but yesterday she really listened to my concerns. Symptoms aside, there was no denying the fact that I have a very enlarged goiter (what, am I 80? Geez!) that is quite visible in my neck. I have constantly swollen lymph nodes in my neck as well as an often hoarse voice which are of great concern to me as well.

I am waiting to hear back about the six (gah!) vials of blood they took from me yesterday, and then I have an ultrasound on Monday morning. The doctor does believe I have some sort of nodule in there, and if the ultrasound shows something, I'll then have a fine needle biopsy done. She speculated that my issues sound like Hashimoto's Disease, which I know is very common and very treatable. Regardless, a Mama just can't help but go over the 'what ifs' and get a little bit nervous.

On the flip side, if they do find something and they can safely treat it, I would be oh-so thrilled to know that I haven't created my own feeling-like-shit destiny over the past few years. And even better...maybe I'll drop these 10 lbs. that have crept up on me from out of the blue! Always have to look on the bright side, eh?

Just to let you know how warped I can be at times, though, I did mention to my husband last night that I sure would be pissed if I ended up having cancer that required chemotherapy treatments to cure. I have painstakingly grown my hair long(ish) for the first time in nearly 20 years, and I'll be damned if I'm going to lose it all in clumps after working so hard to get it like this! Vanity's a bitch, ain't it? But I would rock me some cute freaking wigs if I had to...my friends totally know that I would :)

So just keep me in your thoughts if you have more to spare. I feel like I have needed so much from my friends over the past several years, and I can only hope that I gave enough to each of you before that. This libra needs to keep the scales even, you know!

Vacations With Children Who Have Special Needs

2010-03-03T09:49:00.000-08:00

Someone posted a link on one of my autism support boards about a family camp for kids with special needs. They'd heard great things about it...so I opened the link because, who knows, maybe this is something we'll want to do one day?

As I read the descriptions of the new log cabins complete with full accessibility for those with special needs...and then I read that there was an airport nearby 'just in case a medical necessity required one to need to fly out for an emergency'...and then I saw the photos of the medically fragile children and the children with Downs happily being hoisted into the pools...and I cried.

I cried because I know the other half would never go for it. I cried because there's still this part of me that doesn't totally feel like we fit in with the families that can fully embrace these sorts of camps. I cried because I selfishly want to go on 'normal' family vacations without them having to be total safe zones for my child.

I have not yet blogged about it, but we took a very spontaneous and wonderful trip to Kauai two weeks ago. The kids were out of school and we were feeling the need for a getaway. Fortunately, the other half had been saving up Marriot reward points for years and we had enough for a free, five-night stay pretty much anywhere. When you live on the west coast, last-minute travel deals are definitely available to Hawaii. The other half booked our tickets at 6pm and we were in the air by 9 am the next morning!

The trip really was fabulous--well, except for our delay in getting home, but that's for another post. M did amazingly well on the long flights and was overall a champ on most of the trip. But there were those little letdowns that I tried very hard to not let overshadow a trip of mostly successes. For example, I really, really wanted to take the kids to a luau. I thought they'd really enjoy all of the dancing and drumming. We went to the most-amazing Hyatt resort and even had the chef prepare M a special, gluten-free plate. $250 spent and I had maybe five bites of a plate the other half had to prepare for me and one, weak mai tai. M just couldn't/wouldn't tolerate it. And this is not a child who has sensory sensitive issues. M LOVES music and drumming...usually. And even B got in on the action. We seem to have hit the terrible threes combined with his need to cause a bit of drama when his brother is doing the same. It was so thoroughly disappointing. I had to really force myself to not dwell on it once we left.

I realize just how whiny this all sounds and I also realize I need to focus on the great parts of the trip--chilling by the pool, playing in the sand, driving to Hanalei. But I can't help but wonder if we'll ever get to a place where our blood pressure remains low during an ENTIRE vacation. Is it possible? And if it is, does it have to be in a special setting? As I have said before, we are in such a transitional stage of our lives. Acceptance of our new normal comes only with time and practice, and unfortunately at different paces for each member of our family.
But we will get there. And we will find our purpose and our path in this world.

You all are helping me achieve that with your support. So thank you!

Small Victories

2010-03-01T09:36:00.000-08:00

It's prudent to mention something bright amidst the other noise. Last week two energetic, young, TRAINED, paraprofessionals were hired from a non-public agency to be M's new aides during the day. WOOHOO!

These two women are from a well-respected agency in our area and have worked extensively with children on the spectrum and are trained in behavioral techniques.
I am remaining skeptically optimistic about the effect this will have on M, but am so thrilled that his primary interaction will no longer be with people who don't understand him.

This does not, of course, change the fact that he is in a ridiculously over-stimulating classroom with a teacher who finds him a burden. Her latest snub was to not let us know that they were doing Valentine's cards or having a party. I called her out on it when I walked into the classroom and saw all the children working excitedly on their cards. She sort of brushed me off with a 'Well, I just forget to put things in his backpack.' M rarely has schoolwork or notices in the backpack he carries to school every single day.

I am working on that part of things and will hopefully get him moved to the other special day classroom where things are a bit more disorganized in some ways, but at least the teacher is extremely loving and kind; traits that can make all the difference for my little guy.

Getting To The Bottom Of It

2010-02-28T11:52:00.000-08:00

I have been convinced for some time that something else is going on with M. When I describe the regression over the past two years to doctors and professionals, they all agree that it does not make sense to have regressed so greatly after the age of four, and that the transition-though certainly hard on him-cannot be the only reason for all of this.

I was convinced last Spring that we'd find something in the panel of tests we did with the genetics team. He has so many features of fragile x, but alas, no answers there.

I switched to a new biomedical team last October and the developmental pediatrician I work with is a very thoughtful man who really listens to my concerns. Though he is a bit baffled by it all as well, he is totally open to and in agreement with pursuing all options to get to the bottom of this.

You may recall us venturing down the road of PANDAS. M had several bouts of strep throat this past year and always showed great improvement of skills and behaviors while on antibiotics. We drew ASO titers (blood testing for strep levels) and they were <6; thus in the normal range. My next question for the doctor was whether or not M could be having seizures without us realizing it. The answer was that this is absolutely possible. Yikes. We had a neurologist back on the mother ship that we were very displeased with. He spent very little time with us over a three year period, and basically dissuaded us from doing some of the bigger neurological tests because 'we probably wouldn't find anything.' A few days ago I met with a very different pediatric neurologist who within five minutes told me that we absolutely need to do an MRI and an EEG to rule out Landau Kleffner syndrome, which I had ironically discovered just the day before our appointment. This is a very rare syndrome, but at least we could treat him with anti-convulsants and possibly get back a little of the boy we seem to have lost.
We will also do another big blood draw to retest for some metabolic disorders as well as test M's thyroid levels. It is a strange thing to hope that they find something in at least one of these tests, but that is where I am these days...hoping to find an answer to SOMETHING.

And if they all come back negative, our next discussion will be along the lines of prescribing resperdal or abilify to M. I did not want to go down that path, but I feel like we have exhausted our options at this point. Even our developmental pediatrician--a man who fully believes in treating with vitamin supplements and diet, and who wrote a book about treating ADHD without drugs--suggested that this might be something M needs in order to lead a more fulfilling life. Sigh.

So hopefully we will be able to schedule these tests fairly quickly and with little to no gruff from the insurance company. I am not looking forward to the fact that we will have to use two different sedatives for the MRI and the EEG, so please keep M in your thoughts that he has no adverse reactions to either.

I will keep you posted.

A Lot On My Mind

2010-02-26T10:38:00.000-08:00

I think about blogging every single day, and yet it is hard to take even a few quiet moments to gather my thoughts here.
I am really trying to use the word 'balance' as my mantra for this new year. My stress levels are at times feeling quite unmanageable, which I know is not healthy. It's all about control, and feeling like I have so little of it is not something I am suited to accept.

As many of you know, I have rescued quite a few pets through the years and spent my six years in Austin fostering dogs through the amazing Blue Dog Rescue, and working with local shelters. 'Animal rescuer' became a part of my personal title that I was proud of; a title that made me feel like I was doing something good and important in this world. It was beyond a hobby...it was a commitment to making the world a better place.

During college and in the years shortly thereafter, I adopted a total of five pets: three dogs and two cats. You may recall this past summer when I lost my sweet, sweet Daisy dog to an aggressive form of cancer, and the number of pets became four. Four pets in a house ill-equipped for any pets at all combined with the stress of raising a child with special needs equals even more stress. I wasn't the type of pet owner I wanted to be and have felt incredible guilt at my frustration with the animals. But we chugged along as we always have, because it is my firm belief that you adopt an animal for life.

That is, until one of my cats began peeing all over my house last summer.

I adopted Jade as a naive college student. I would go to the local animal shelter constantly to the point where they no longer required me to have an employee escort me to the kennels. One day, I came across a bright orange tabby cat with six, tiny orange kitties and two, totally-out-of-place, gray and white siamese mix kittens. It turned out that the Mama had her kittens in the same dumpster as a Siamese and for whatever reason, these two misfits were left to fend for themselves. And, so, as is often the way in the amazing world of animals, the orange tabby selflessly gave her milk to the two Siamese mixes who needed that in order to survive.

I learned that the kittens would be available for adoption in two days, and I returned fairly soon after the shelter opened to see that all of them had been adopted except for one of the Siamese mixes. She was tiny and sniffly and anyone in their right mind knew she probably wasn't going to make it. But since the staff knew me to be a giant sucker, they told me that they'd just give her a shot of antibiotics and she'd be just fine. The part they neglected to tell me was that she was only two weeks old and would have to not only be hand-fed, but would also have to be assisted in all things, including simulating a mother cat licking her to make her go to the bathroom! A few days into her new life with me, I noticed her tummy swelling to obscene proportions. Fortunately I had enough wits about me to call a vet who explained she could have basically imploded from the pressure if I hadn't called them sooner. Great! Fortunately it required nothing more than remembering to occasionally, ahem, 'massage' her with a warm washcloth.

Jade was always very elusive. She was social only with me, and even then, only at certain times of the day. She adored the dogs, though, and was the pet project of her bossier older feline sister, Kahlua. It was clear, however, that even when you adopt an animal as young as she was, you can't quite take the feral out of a feral-born cat.

I'll spare you any more of my ramblings and bring you to the present. I made the decision to euthanize Jade yesterday. It was absolutely one of the hardest things I have ever had to do. I don't 'kill' animals...I rescue them! But the strain of cleaning endlessly peed upon carpet has taken its toll on the entire family. One of the boys' bedrooms has not even been in use for months because I got so fed up that I actually tore a large chunk of carpet out of it and threw it away. Who lives like this? When we got home from a six-day vacation Wednesday, the wetness in our master bedroom was so unbelievable that I knew we couldn't do this any longer.

I had taken Jade in three months ago to rule out any medical conditions that could make an almost 15-year-old cat who'd never soiled outside of her litter box start this sort of behavior. I was so hopeful they'd find a urinary tract infection or something else that was either treatable, or would give me a clearer conscience about euthanizing her. But neither occurred. For some reason, Jade wasn't happy anymore. She spent nearly the entire day curled up underneath a fleece mat inside her crate in the laundry room and came out only at night to wreak havoc on our bedrooms.

And so, because I could not see any other areas of stress in my life that could be eliminated, and because SOMETHING had to give around here before I have a full-on breakdown, I chose to end my cat's life.

I can only hope I can be forgiven for such a thing.

I know those of you who aren't animal lovers will think that is insane to worry about...and those of you who are will hopefully say a little prayer that her passing was quick and painless, and that she forgives me.

And then...there were three.

TACA Talk About Curing Autism - Help, Hope and Support - Support - After the Autism Diagnosis: Staying Connected as a Couple

2010-02-13T09:23:00.001-08:00

TACA Talk About Curing Autism - Help, Hope and Support - Support - After the Autism Diagnosis: Staying Connected as a Couple

Posted using ShareThis

The Sun Is Shining

2010-02-11T14:40:00.000-08:00

I thought this fact was worth noticing every once in awhile!

Which reminds me...I need to occasionally remind myself of the sunny things in my life; especially those things that on first glance may not seem so sunny, but really are.

-M can feed himself. It makes me a tiny bit crazy that he still mostly opts for using his fingers. And even though a ton of his food ends up on his lap, the floor, or smeared on the lenses of his glasses, he is feeding himself.

-M can walk. I feel like I spend much of my time holding onto a limp-gripped hand that relies way more on my back muscles than his own to pull him along, but he is walking. Before he began to do so at nearly two years of age, I yearned for any sort of independent walking. I need to remember that.

-M loves watching movies and television. It's that thing a modern Mom hates to admit given the general population's theories and opinions on tv and our children, but this is one of a very, very short list of things that my boy finds pleasure in. But you know what...he is happy when he's doing it.

-M knows how to use the potty. Even though he has taken a step back over the past six or so months and wets himself a few times each week; and even though he still has to wear a diaper at night; he never has a bowel movement in his pants and has worn big-boy underpants during the day for nearly two and a half years. Trust me...this is huge.

-M loves to eat. I worry that his low muscle tone and lack of desire to exercise will contribute to him becoming more overweight. I also worry that he has developed a wee bit of a food obsession through some of the behavioral training they are doing in school. BUT...M enjoys many types of food. The same cannot be said for many children with autism who may only have a handful of different foods they'll tolerate. He is a good eater and eats a huge variety of foods.

So like my 'Thankful Sundays' which seem to have gone by the wayside, I need to throw in the occasional
post where I look at things on the bright side.

It could always be worse, right?!

Damn You...

2010-02-08T09:42:00.000-08:00

...beautiful town with your beaches and trails; your people I adore; your weather and festivals; your pumpkins and sea glass; your harbor and your farms; your ideals and openness.

Damn you for giving me those weekends where I think, 'but what if...'

Damn you for having such awful schools.

Damn.

I Knew This Day Would Come...

2010-02-06T09:03:00.000-08:00

I'm writing at Hopeful Parents today.
Come take a read!

Things That Make You Stop To Think

2010-01-26T13:57:00.000-08:00

I received a message from one of the online autism groups I am a member of about a mother of four-year-old twin boys; both who have autism.

Last week she dropped the boys at school, walked out to her car, and died of a brain aneurysm.

The words have haunted me over the past 24 hours. I know that anyone can have an aneurysm, but did the stress of parenting her boys ultimately lead to her death?

I am sure I am not alone in this world of special needs parenting when I say that I have thought many times that I am slowly killing myself by not getting my stress managed to a more controlled level.

This is an eye-opener for me. One more reason to top many for getting our family into a more stable situation.

Say a prayer for those boys, okay?

Seven Minutes In The Life Of M

2010-01-24T23:21:00.000-08:00

I was originally thinking of doing a very short entry that read as follows:

Thanks for calling. We're sorry we're not home right now...we've all gone stark-raving mad!

And then I was going to leave you with a short video of my boy making THE.SOUNDS he makes 99.7% of every single day lately that have us all loony, nervous-like wrecks.

But I'm not really good at sticking to my plans. And I'm certainly not very good at being concise and to the point. So when I began shooting my little video on my sweet new, Mino high definition Flip video camera, well, let's just say it turned into a seven-minute documentary that you may or may not feel the need to watch after reading all of this.

I questioned myself for a moment when considering putting this here for such public viewing, but because I know it has helped me numerous times to see videos of other children like M, (whose name I totally spill in the video-doh!), I thought it might be beneficial for some of you readers as well. Not only might you feel oddly reassured that someone else's child has similar mannerisms or sounds to your child, but my close friends and family who don't necessarily see this side of M--or who don't really see M in person at all--can get a little better vantage point of what life can be like around here.

That said, I do feel the need to let you know that M most definitely is more than the sounds, flapping arms, and pacing that you'll see in this 7-minute clip. There are moments of clarity and quiet where he surprises us with a few longed-for words or his amazing, dimply smile. But it seems like with the regression we've seen over the past almost-two-years, our boy offers less and less of what I know is lurking somewhere deep inside him still. He doesn't seem to find much pleasure in any activity other than the occasional book and, of course, movies. We did have a relatively sound-free couple of hours hunting sea glass and pretty rocks at the beach yesterday, but he actually freaked us out a little with his calmness. At one point he was so, so very calm that he just laid on his side in the sand--in a strange s-shape--looking nearly catatonic with his eyes open, but his body frozen. And no, I don't believe he was having any sort of seizure here, (because someone will inevitably ask), but the possibility that some sort of seizures may be occurring completely without our notice is starting to nip at my awareness.

*If any of you readers have discovered that your child is/was having seizures that you were unaware of, please, please let me know. I am very aware of what 'absent seizures' look like and know that M has never had one of these...but what if there are other types of seizures that have slowly damaged his brain over the last two years without any of us realizing it?

Well, before I start heading off on another tangent, here is the video from this evening...and the reason that the other half and I just might be a tiny bit more tense than usual lately...

Diary Of A Guilt-Ridden Mom

2010-01-13T09:07:00.000-08:00

I'm sick. Like can't breathe out of my nose, or swallow the pins in my throat sick.
I'm a tiny bit claustrophobic and have a history of sinus issues, so not being able to breathe out of my nose sort of sends me into a tailspin.

And where did I get the latest sickness? M. M who won't stop putting his hands in his mouth or stop chewing on germy things. We get sick way too often around here and yesterday I got really angry about it.

I'm solo parenting until I take M back to the mother ship tomorrow where the other half and B already are. Solo parenting a kid who doesn't feel well while I also don't feel well is not a very good recipe. Add to that the fact that M would not go to sleep on Monday night until he finally crashed (with me in bed beside him) at 11 pm.

He must have gotten out of his own bed four times before I finally gave up any chance of alone-time and went to bed with him. So when he decided to play the same game last night even though I thought I was being wise by starting him in my bed, I blew up. I was a mean Mommy. I talked loudly to him in complicated strings of emotional blubber that I know he never could have totally understood. I made him cry when I yelled at him to JUST STOP MAKING THOSE SOUNDS FOR ONE MINUTE! How horrifying to not be in control of those sounds and then to also not be in control of someone twice your size getting angry at you because of them.

I feel absolutely terrible about it.

The other half called during this time and I said more mean things to him. I told him that I didn't know what to do with this child who has spent the last 48 hours in constant, vibrating, sing-songy sound and motion. I wondered aloud if it was time to put him on medication to make him stop. Just for one freaking minute. I said that I didn't care that he was sitting on the steps below me waiting for me to lay down with him AGAIN because I didn't feel good either and DAMN IT, I deserved a break too.

In other words...I sounded like a big freaking bratty baby. I know I did and I freely admit it. I have a lot of making up to do to him today and the worst thing is that he'll readily accept it rather than dish back to me a bit of what I likely deserve.

Sometimes not getting any feedback from your non-verbal child is way worse than any of the behaviors they emote. It's like talking to a wall, except that you're looking at your beautiful child and just wishing they'd say, 'Mommy, I love you! I'm sorry I made you mad.' -or- 'Mommy, please stop yelling at me. You're hurting my feelings!' I have heard Miles say he loves me--genuinely said it without prompting--twice. TWICE. And both times I bawled my eyes out like a baby (like I am now at the thought) because I needed so desperately to hear those words and to know that he was capable of loving me. Crap. This has taken a turn I hadn't intended and now I think I probably just need to take a moment to myself before he wakes up to ask for forgiveness from the universe. And then I will begin working on his forgiveness too. Clearly he's needed me more than I have been capable of giving the past two days and I need to make that up to him.

Parenting is hard, isn't it?

Allies In Strange Places?

2010-01-12T09:42:00.000-08:00

I still haven't heard back from the special education director, but the district's BCBA (board certified behavioral analyst) called yesterday and I asked her if the director had mentioned getting my messages. This turned into a full-on confessional of my thoughts and concerns about my son's school program and the incompetent teachers and aides he is with most of his day. I was hesitant to spill some of the beans with her--which she totally sensed--and then admitted to me that she has been documenting some of her own concerns about these people and their ability to connect with M as well as properly execute the programs she has laid out before them. It was a relief to hear her tell me this. I mean, don't we all just need a little validation of our feelings every once in awhile to let us know we aren't completely off our rockers? I know I probably need that validation more than most given my teetering position on the edge of sanity's cliff :)
Anyhow, she took notes of our conversation and was going to send them to the director for discussion. She suggested that the three of us get together to speak further about all of this. I told her I was open to that as long as the classroom teacher was not there because I wanted to be able to feel I could be open and honest. So we will see what this brings about...
Ironically, we are closer than ever to getting the heck out of dodge for M's sake. We are considering the boys, pets and I making a move back to the mother ship soon where we'd live in a rental home while the other half stays here to sell this one.
In the town I grew up in, there are more than a few elementary schools that have 'centralized structured classrooms' for kids with autism. They are set up using autism-specific methodologies; organized, quieter, and language-based. FOR FREE! It's absurd to me that there aren't more options like that here. Absolutely absurd.
But what would be even more absurd, and oh-so in line with the way life has gone 'round here, is if this district finally agreed to pay for the crazy-expensive private school for M right when I was thisclose to moving back to Texas. I am really not sure what our response would be if that was offered to us at this point. As much as we love it here, we are realizing the value of family support for the mental well being of each member of our family.
So stay tuned for more...I have no idea where this train's taking us!

Frustration

2010-01-08T14:00:00.000-08:00

I left a message at 10 am this past Monday morning for the new special education director of our school district. I left a message at 10 am on Thursday for her. I also left a message at 1:30 pm today. Guess what? I still haven't heard back from her!
I'm getting weird vibes from M's teacher, so I have a strong hunch the director is gathering as much ammo against us as she can before we speak...but how freaking unprofessional is she being by not getting back to me?

And here's one for the 'she-really-said-that?' files...one of M's aides who has in the past expressed interest in learning about some of the biomedical stuff we are doing with him used my past discussions about PANDAS and strep titers in a most inappropriate manner...
M had a VERY bad day on Tuesday following a night when he woke up at 4 am and kept the rest of us up as well. When I went to pick him up, one aide said to me, 'He is being nasty. Just nasty! He is really lashing out at everyone.' And then the other aide in this whiny-ass voice said, 'Yeah, he scratched me really hard. It made me bleed and hurt a lot.' And the kicker...'I probably shouldn't ask you this, but do I need to be worried about that bacteria you told me he might have?'

I paused with furrowed brow wondering if I'd really heard her ask such a dumbass question. I finally could only respond with a 'Whu?? No!' I told the other half that I wished I'd been quicker and actually said, 'No, you don't need to worry about the bacteria, but you should probably worry about the very rare South African Wamu Wamu disease that he has.'

She's a dumbass...

They are all dumbasses...

Am I being too harsh?

History Of A Stim

2010-01-05T23:24:00.000-08:00

Here I am! Here I am! Here I am!! Go read my latest contribution over here!!

Today...

2010-01-04T09:42:00.000-08:00

...my son who absolutely does show happiness and excitement over seeing some people he has not seen in awhile, did not offer up any emotion at all as his aide drove toward us smiling and waving.

Today...

...as I sat with him in the car while he finished his milk with a calmer body than most school mornings, I made him this promise: This year I will make this better for you. I absolutely will.

Today...

...my son walked without event or emotion into his classroom and took his seat in the gray chair among a sea of blue ones. I find the symbolism of this gray chair--the one they put there to 'help him' know his seat from the others--ironic and sad.

Today...

...I will fight some more for a promising, APPROPRIATE, and FAIR education for my boy who has so much potential that continues to go unseen by these people.

Oh, The Wonderful Things That Autism Can Do

2010-01-01T18:47:00.000-08:00

Remember when I wrote this about the woman on the other side of the country who sent me an adaptive computer mouse and an amazingly beautiful photo of her autistic daughter with a note about paying it forward?

The universe seems to have weird ways of bringing people together, and today I had another such encounter.

I'm on a local freecycle group...nothing specifically to do with special needs or autism. People request things they'd like to have all the time, and mostly I skim over these posts.

Today, however, a woman requested a list of items for a student. She said the student was going to college/residential program. This was the extent of her description of this young man and yet I *knew* that this boy had autism. I just KNEW it! Even more ironic was that one of her 6 requested items was a printer. I just so happened to have hooked up the new printer my parents sent us for Christmas and was going to post my old one to freecycle within the next day or so! So naturally, this was the perfect fit.

I didn't ask any questions about the student, I just told her that I had a few of the items she needed. I received the following email response from her:

the student in question has autism. he's going to a program in xxxx for kids that need residential/academic support.
he was my high school student briefly and he's living with me because his mom is a drug addicted psycho.
he got a full scholarship for the program through regional center who cares for adults w/disabilities.
he's 18.

Amazing, huh? So I've sent a note to see how else I can assist this boy who has clearly had a tough life and whose mother has obviously had her own tough life to deal with as well. You know, if I hadn't actually walked many days in her shoes, I'd probably call her a psycho too. And maybe she is; but because I can empathize with how difficult this can be, I have heartfelt sadness for her as well. I've seen autism and I have seen drugs, and trust me when I tell you that both can leave you feeling lost and empty. But perhaps that is meant for a separate post? Or not...!

Humor In Everything

2009-12-31T11:28:00.000-08:00

We parents of children with autism have to become our own types of comedians. I've made a few jokes to non-autism parents and found even more humor in their mixed reactions...it's totally not intentional to make you squirm with one of my off-color remarks, I swear!! So thank you to those of you who are able to chuckle along with me during these times. If I don't make jokes, well, then I've lost even more of myself than I already have.

And so you will understand why I found it really freaking funny that on Monday, hours after writing my post where I inaccurately told you that M had not defecated in his pants in two years and then even knocked on some wood so as to not tempt the gods of poo to swarm down on me. In terms of the inaccuracy of my statement, I had forgotten a particularly awful, in-pants poo last summer when we did a little home test to see if M could tolerate larger amounts of gluten. The answer was a very foamy and stinky, 'hell, no.' In-home experiments aside, however, M had not done that in quite some time. Until, of course, I went and freaking bragged about him not doing it. Why, oh why, did I have to go and do that?

I was lucky to have some me time Monday night where I met a hometown friend also living in the Bay Area for an amazing dinner. When I opened the door after returning home, I was hit with the stench of a thousand poos wafting from my bathroom around the corner. There, the other half was washing M off in the shower as a really disgusting pair of jammy pants lay before me on the floor. (He's never been the best at multitasking, that one) So before I could even get out of my cute sweater and boots that I rarely get to wear anymore, I was in poo-cleanup-mode and off to the laundry room. We got through it. We always do...

And then the next night, we decided on the spur of the moment to join a friend and her son at the local sushi joint. We haven't been doing quite as many dinners out as we once did with M's new found disdain for all things public, but we wanted to give it a go since the boys love sushi. Fortunately, we sat in one of those tables with mats on the floor...or else the other restaurant patrons would have been regaled with a show of gushing pee flowing to the floor from M's chair.
But since he was already on the floor and didn't give two hoots about being soaking wet...and because we'd just ordered our sake and beer...we just shrugged our shoulders and went on with dinner the best we could. We have to get past these sorts of hiccups...we can no longer be slaves to all things M. That sounds harsh and selfish, and trust me it does not apply to all situations and we most certainly always put M's well-being first and foremost; but because he was still happy and not concerned, we had to be the same. We were having a lovely time after all, and dammit, we deserve those too :)

And don't worry...I made sure to get some paper towels and some hand sanitizer to properly clean the tatami mat he sat on. I haven't lost all of my good manners...yet.

Happy New Year to all of you! May 2009 suck it along with most of the rest of the decade. And 2010...I am putting alot of faith in you, so don't let me down now, okay?

Christmas

2009-12-28T11:33:00.000-08:00

We decided to take a last-minute trip to Tahoe for the holiday. We found a beautiful house that had all the comforts of home; minus the tree, of course. B was amazed at the snow which stood two feet deep on all parts of the property. He liked it until it went inside his ill-equipped rain boots, soaking both pairs of socks he wore and making him done, done, done with the snow. RIGHT.THEN!
I usually love renting homes in beautiful places like this, but for some reason I just could not get myself into the groove of this one, no matter how lovely and comfortable it was. I couldn't relax. I didn't sleep well. I didn't sit and read my book as planned. It was as though three days came and went in a flash that left me only with the rushed feeling of having to pack up the car and come home to mounds and mounds of laundry. I'm not quite sure what my deal was, but I am happy that at least B keeps saying he had a great time at the 'vacation house.'
M has been a bit tough this past week, and I am certain that played the largest part in my apathy toward our getaway. He has been physically hurting us several to many times a day. The other half received three cuts on his face during those three days, and I am marked with tiny fingernail-shaped scabs on my hands and wrists. He has become a master of using his nails to pinch and hurt...the same nails that scratch on walls and won't allow themselves to be cut more than two at one sitting. So needless to say, they are jagged and can really hurt. But the cuts really don't hurt more than our feelings do. How can your own child lash out at you continuously like that? Doesn't he love us? Well, the answer is, of course he does. We realize that he is beyond frustrated at not being able to communicate his needs or how he is feeling and it's human nature to lash out at those you are closest to. But nonetheless, when I see the clenched jaw and hear the.noise I can't help but flinch and try to run away. It is also human nature to not want to be hurt by someone, even if that someone is your beloved six-year-old child.
On the plus side, however, we were really pleased with how much he is trying to talk to us since school break began. You can really tell he is making desperate attempts to find words to tell us what he wants. Another plus that at first seemed like a negative was that we believe he was really and truly excited about the prospect of Santa Claus visiting us and leaving presents. He has been having great difficulty calming his body to go to sleep lately, but once he finally does he is a heavy sleeper who will sleep until 9 am if allowed. On Christmas Eve we had an even more difficult than usual time getting him to bed, and once he finally did he was then awake and wandering at 4:30 am, and then up for good at 7 am. I think he knew what was up and that made me feel a bit reassured.
I also am coming to the conclusion that M is suffering from gut pain. His poor belly is so distended and on days when he seems to be more irritable than normal, his belly can be almost rock-hard in spots. Remember when I mentioned PANDAS and the strep titer? Well, we ran a whole slew of tests and found that his strep titers were actually normal. This was surprising since he very clearly responds well to antibiotics. The doctor was hesitant to prescribe more of them, but felt we needed to do another trial to see if we got another good response. We just completed two weeks and though the tantrums and aggression were not as under control as they were in November, his teachers definitely reported that he was more 'on.' Another interesting thing to note was that when not on antibiotics, he was/is having potty accidents. It is incredibly frustrating. Fortunately for us, he has not defecated in his pants in over two years (knocking on wood) and only urinated. But despite having us put him on the potty over and over, he'll just pee his pants and sit in it as though he does not even notice or care. It's bizarre.
The other test we ran also showed concern with his gut. M has been supplemented with vitamins like zinc, magnesium, calcium, etc. for two years. Oddly, these were all the things that were out of range, low, on the blood tests. He is also quite low on iron, which we just began supplementing yesterday. What does this tell us? It tells us that for some reason he is not absorbing nutrients properly. There are theories about children with autism having a condition called 'autistic enterocolitis.' This term was coined by the controversial Dr. Andrew Wakefield of Thoughtful House where M was seen until we recently decided to find a local biomedical doctor. There are many people who are in disagreement about this conditions existence. I, however, have met way too many people who have children on the spectrum with similar digestive problems to dismiss this as a very real possibility. So I have contacted Thoughtful House to begin the process of seeing Dr. Arthur Krigsman who is considered the best pediatric gastroenterologist in the autism field. I have no idea when we will get back to Austin to see Dr. Krigsman, but I am hopeful that he will find something that is treatable to help get M back on track.
My other plan of attack is to once and for all build up my kahunas to finally pull M out of this awful school. I just canNOT let the teacher saying to me 'Maybe this is just who M is' go and I realize that these people are only continuing to further damage my child. Might sound extreme, but I fully believe that they are. Once I figure out the legalities of it all (do I have to register as a homeschooler, etc.) I will withdraw him. I am very hopeful my experiment will prove beneficial.

This was an extremely rambling post, and for those of you who stuck with it, thanks!
Lots on my mind, I suppose, and I just needed to spew it forth here :)

Heartfelt

2009-12-16T21:54:00.000-08:00

When the rain is blowing in your face
And the whole world is on your case
I could offer you a warm embrace
To make you feel my love

When the evening shadows and the stars appear
And there is no one there to dry your tears
I could hold you for a million years
To make you feel my love

I know you haven't made your mind up yet
But I would never do you wrong
I've known it from the moment that we met
No doubt in my mind where you belong

I'd go hungry, I'd go black and blue
I'd go crawling down the avenue
There ain't nothing that I wouldn't do
To make you feel my love

The storms are raging on the rollin' sea
Down on the highway of regret
The winds of change are blowing wild and free
But you ain't seen nothing like me yet

I could make you happy, make your dreams come true
I know there's nothing that I wouldn't do
Go to the ends of the earth for you
To make you feel my love

To make you feel my love

-Written by Bob Dylan

Turning Tides

2009-12-12T11:03:00.000-08:00

I keep telling people that 2010 is going to be my year. After telling 2008 to 'suck it,' and knowing that I'll be doing the same come New Year's Eve 2009, I'm probably proclaiming 2010 as the Year of Deb partly because I believe it has to be, and partly because I'm not quite sure what I'll do if it isn't!

My parents recently visited for a.whole.week. over the Thanksgiving holiday. I love my parents very much and feel close to them in many ways, but they are not the people I feel most comfortable showing the raw and real truth of our day to day living. There aren't many people we can comfortably show that to, but with my parents it's even more difficult. Part of this is because I end up getting a little stressed because the other half isn't the biggest fan of my parents; a thing that I understand in some ways, but don't at all understand in others...I mean, they're MY parents for frack's sake. If you love me, please tolerate them, no?
But the other part is that my parents have this unspoken air of superiority in their handling of all matters, be they financial, family, etc. They don't have to spell out these feelings to know that they are there. My mother has said to me (and you'll probably gasp a bit when you read this) 'You don't need to have another child. You've got a lot to handle already.' They said this about my sister way back when as well, and though I wholeheartedly agree, I now realize that that is just nobody's place to say that but mine or my sister's, or anyone else's. And though she said it from a place of love, the delivery just never seems to settle right with me.

So when both my parents expressed several times (again, from their own type of loving place) that 'we have our hands really full,' or other comments like how difficult it is to dress M and how they don't know how I do it, etc. I started to realize what all of 'this' must look like to them, and how I don't really want other people to see the real 'this' anymore. I don't mean that I'm closing my open book attitude on my life. I am not a rose colored glasses person, so why artificially paint something to appear that way? But there are just some people in my life that I think I'd rather not have believing that things are so horrible...because they aren't. Not really anyway.

So this is why I feel the tide is turning...or at least that it must. In trying to soften the things my parents believe they saw to be so difficult, I told my Mom that I was really starting to learn that you can't be handed a situation like this and not try to find out the meaning of it all; to figure out what your purpose is along this journey. So this is what I am trying to do now...and I'm trying to find out the best way to achieve this purpose. I don't want to live my life as a victim of circumstance. I think I have done that for the past couple of years without really realizing that, yes, this did happen to me, but it happens for M times 100 each and every moment of his life.

I don't type all this out because I believe I'm going to all of a sudden not have any stress in my life. I don't believe that I won't continue to lose my shit just a tiny bit each time during the day that M yells at me, digs his nails into my arms, and goes limp-legged making my back ache just a little bit more than it already did. No, these are the truths of my existence that I cannot hide.

So be gentle with me...don't be too hard on me when I slip up and am not positive. Tides don't turn overnight, you know. But knowing that they need to is at least one step in the right direction. Hopefully my steps will be large, comfortable strides rather than tentative baby ones. One can hope, right?

Autism Prevalence

2009-12-09T08:56:00.000-08:00

Thoughtful House (in Austin, TX) just released updated data for 2008-2009. You can access graphs for all of the states and outlying areas here.

This data is based upon reports of students receiving special education services due to a diagnosis of autism.
Please keep in mind that these shocking increases do not include students who are home schooled, in private placements, too high functioning to receive special education services, or not receiving the services they need at all.

The most significant note was 1 in 67 eight-year-olds receiving special ed. services for autism in the state of Minnesota. I have heard that Minnesota is a leader in terms of providing appropriate services for our kids, so if you consider that even this number is likely underrepresented, well, we should all be completely appalled.

I cannot tell you how many families I know in the state of California whose children seem to clearly be impaired by autism and yet are told that they do not qualify for services under that label. (or any other label for that matter, unfortunately) So consider just how high the numbers might really be in your state.

Autism - Statistics, Incidence, Prevalence, Rates

2009-12-09T08:48:00.000-08:00

I thought this information might be interesting to some of you.

Thoughtful House (in Austin, TX) just released updated data for each state and outlying areas based upon the number of children currently receiving special education services due to a diagnosis of autism. Please keep in mind that these shocking numbers are understated since those who are home schooled, in private schools, too high functioning to receive special education services, or not receiving the appropriate services at all, are not counted.

Autism - Statistics, Incidence, Prevalence, Rates

Navigating The System

2009-12-06T10:32:00.000-08:00

I'm over at Hopeful Parents today. Please stop by and read some of the amazing stories other parents share on this great site!