Autism Awareness Rally at the MA State House

Well, did manage to hit my third rare occassion yesterday.. I DID end up going to my bed early.. only problem was that I still DID NOT fall asleep any earlier than I typically do. Bummer!!!
Today was definitely still a very bumpy ride with Salamander, so yes, we are still on a 'down slope' of the rollercoaster.. But as I kept things very low key and avoided stressors (both situations and PEOPLE!!) as much as possible, we got through the day in one piece. We'll see what tomorrow brings..

By the way, April is Autism Awareness Month and tomorrow there will be a rally at the MA State House in Boston. I had really wanted to go, but once again, I managed to end up with a work related deadline on the day of the rally (don't ask.. I am CURSED when it comes to planning for stuff that -I- really want to do..). So I'll have to participate in spirit (or 'haunt in spirit'?? LOL..)

As I was rooting through my 'writings file' today (ok, ok, fine.. rantings file.. happy now?), I found the following testimonial back that I wrote in November of 2005 in support of MA State legislature to ban thimerosal in vaccines and to minimize mercury exposure from other sources . Thank goodness Salamander has continued to progress very well, but everything else I wrote is still dead one.

So in honor of the Autism Awareness Rally, here goes:

December 14, 2005

Good morning/afternoon. My name is [removed], and I am raising two young boys in Norwood, MA. My older son, whom I’ll refer to as Salamander, was diagnosed with an autism spectrum disorder, specifically Asperger’s Syndrome, and Non Verbal Learning Disorder, anxiety tendencies, attention difficulties and severe sensory dysregulation just two months shy of his sixth birthday. These neurobiological difficulties affect every aspect of Salamander’s functioning; they affect him socially, emotionally, behaviorally, physically and psychologically. They affect him at home, at school and in the community.

I love my son very, very much, and I hold his various quirks and special interests very dear. However, his day-to-day struggles in areas that seem to come so easy and naturally to his peers almost break my heart. I see other kids his age participate in sports, have play dates, go to birthday parties, go to parades, go see the fireworks, all that normal childhood stuff that every kid should be able to do. No, let me rephrase that, normal childhood stuff that every kid has the RIGHT to do. Participating in this normal childhood stuff, however, is almost impossible for my child.

My heart breaks and shatters in a million pieces, when I look back at Salamander’s developmental history and realize that until the age of 2.5 years, while frequently very, very ill, Salamander did develop normally, that is, like a neurotypical child. A very, smart neurotypical child whose daycare teachers more than once commented to me that he was ahead of his peers in many areas of development.

Then something happened. I will never know for sure exactly what happened, but my smart, social, fun loving boy started to change. He became moody, angry, developed great difficulties interacting with other kids, became aggressive for no apparent reason. Over the years, as these difficulties became more and more pronounced, Salamander was almost expelled from a Kindergarten program, as his behaviors, moodiness, lack of social skills and unpredictable reactions made it impossible for him to be with other children without constant incidents. I vividly remember one particular bad 3-week period where I would get calls 5 times or more a day from his daycare to let me know that Salamander had attacked yet another child.

I discussed all of Salamander’s difficulties, and the fact that no matter what parenting technique I used, nothing seemed to work with Salamander with many specialists, including his pediatrician, schoolteachers and counselors, and a psychiatrist. All agreed that something was off, but nobody seemed to be able to explain though what was happening to my little boy. Finally, after the summer from hell where Salamander became increasingly violent with his little baby brother, I had him evaluated by a neuropsychologist. I mentioned the outcomes of that evaluation earlier, and our lives were forever changed.

Salamander is now almost 8 years old [in November 2005 that is]. Thanks to many, many interventions he is making good progress. The majority of his behavioral issues, especially the aggression for no apparent reason, are under some measure of control most of the time. Socially he is making nice strides too. He is, however, struggling tremendously in school, something I would never have expected based on his early childhood development and based upon his academic potential as assessed by standardized testing. His neurobiological challenges make school such an overwhelming environment for him, that, at this point, it is impossible for him to achieve his full potential.

I remain hopeful for the future, as his mother I have to believe that everything will turn out OK. But, honestly, I am frequently overwhelmed with all the support, therapy, and just simple day-to-day care that Salamander requires. And will require for a very long time to come. In addition, Salamander’s challenges have taken an undeniable toll on his little brother, on my marriage, on our family’s financial situation, on our social relationships, and on MY own health. These are prices I wholeheartedly pay, as I love my Salamander so very much, and I want for him to have the very best shot possible at a happy and productive life. Still, I never, ever expected, when Salamander was a little toddler, that just getting through the day would become such a struggle.

[removed some paragraphs that are not relevant in the context of tomorrow's Autism Awareness Rally]

Autism Spectrum Disorders are currently being diagnosed in 1 out of every 150 children. Please, let’s do what we can to make sure that this number does not keep increasing, let’s do whatever we can to seriously investigate and then address any potential factors that could contribute to this very scary rate, even if a clear association has not yet been proven out. I wish for nothing more than to be able to prevent other children from having to go through what my son is going through every single day.


If your children are happy, healthy and thriving, count your blessings and please do whatever is in your power to keep them that way.

If your children are affected, then please, do whatever is in your power to get them to a happy, healthy and thriving place. The road to get there is far from easy, but our children are ENTITLED to get there!!

Peace

(and now off to do some more cooking for next week's lunches).