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!
Tuesday, December 13, 2011
Monday, September 12, 2011
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!
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!
Tuesday, August 23, 2011
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.
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.
Friday, August 19, 2011
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!
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!
Thursday, June 30, 2011
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.
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.
Sunday, June 26, 2011
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!'
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 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!'
Tuesday, May 17, 2011
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...
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...
Tuesday, May 10, 2011
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!
Friday, April 22, 2011
Because Facebook Doesn't Seem To Be The Right Audience...
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!
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
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.
Wednesday, March 23, 2011
Hawaii
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!
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!
Monday, March 7, 2011
Decisions
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.
Wednesday, March 2, 2011
Insight
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...
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...
Saturday, February 12, 2011
Dogless
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!
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!
Sunday, February 6, 2011
Autism & Emotion
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...
Thursday, January 27, 2011
Goodbye, Old Friend
"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.
-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.
Thursday, January 6, 2011
Hopeful Parent-ku
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?
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