I'm A Nerd, That's Why

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

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

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

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

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

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

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!