Friday, July 29, 2011
Aydan turned 6 in April. The months leading up to this day and the subsequent days since have been some of the most anxiety ridden and depressing days of my life. Let me just start by stating that I am not a hypochondriac, a willing patient and I don't seek attention for being sad. In fact, I hate it. I detest it almost as much as when I do feel this way and people are telling me things like "cheer up" or "it's all in your head". Okay, okay.. I believe in mind over matter to an extent, I believe we can make choices that effect our mood and intern effect our health, happiness, etc. but does it ever lift your spirits when someone sits there in judgement of your emotional state? Not in my experience. I'm sure they all mean well but it is for this reason (and a few others) that I generally keep it to myself.
I have always wanted to be a mother. I dreamed of being the attentive, cool, active mom that raised well balanced, healthy, intelligent kids and like most of my fantasies this one did not turn out exactly the way I envisioned. Nevertheless, in all my wildest dreams I couldn't have predicted the amount of love I would feel for my children. I thought I understood it, until I held those babies in my arms. The feeling of unconditional love was overwhelming and transformed me into a vunerable being in ways I couldn't have imagined. I knew that I would do anything to protect them.. ANYTHING! I knew that my life was no longer my own and that no matter how much I may want to give up myself, I could never give up on them and they need me.
If you have a child with autism, you know that birthdays are often bittersweet. You know that when another year passes without recovery, it is another year of buying your aging child toddler toys, it's another celebration that your child may or may not even be aware of and it is another year that the "window" continues to close (more on that later). This year I will say, was slightly different. Aydan laughed and giggled at the sight of his gluten free cake, even trying to cut it with a fork. I relished when I asked him "which puzzle?" and he was able to point to the one with undersea animals not the shapes. Believe me, no one more than I jumps, shouts, claps, or gasps with excitment when any little progress is noticed. If Aydan lifts his spoon to eat a meal without my prompting I squeal so loudly it nearly causes him to drop it and then proceed to sing "Who knows how to use a spoon?? Aydan, Aydan! Who's a big boy now? Aydan, Aydan!" Progress! I love it no matter what the size. I'm normally game when it comes to beating myself to a pulp but in this case I don't believe for a minute that I am ungrateful of what progress has been made. Still as I write this, like so many other blogs before I must walk away to breathe, cry and/or enjoy a mild panic attack. Since giving up is never a viable option I go over the check list several times, what haven't we done yet? Chelation.. yes, it's time to begin chelation, testing underway.. check. Take the school to due process to finally get Aydan the services in speech, occupational therapy, etc. that he needs and deserves, hell, that's OWED to him. They aren't doing us any favors, we're taxpayers, payment rendered, give him what he needs dammit... check.
So here we are.. broke, broken and looking to the horizon, praying for recovery one day. I hear the Tom Petty song in my head "..hey baby, there ain't no easy way out... And I won't back down..." That's right, I won't ever give up, EVER! I don't care how long it takes.. Well that's a lie. I want it sooner rather than later but I'll take it anyway it comes. So am I merely a dreamer? The "experts" would say so. They have this little nonsensical bit of "science" they call the "window of opportunity" (commence eye roll). This is the theory that at around age 6, the brain doesn't continue to learn at the same rate and therefore intensive early intervention treatment will begin to fade. The argument is that "studies" show progress does not sustain hence the necessity of treatment diminshes. Bullshit! This being no different than most "science" based crap is nothing more than a money scheme.. allegedly. Yeah, I allege that. As I started on this path of researching this "window" I realized that there are many bloggers who write on this topic and are much better at this than I am. I wasn't really finding anything anyway so I decided to give this nonsense the attention it deserves and stopped. Honestly it doesn't matter what the "experts" say, they're almost always wrong anyway, so who cares? WE are the experts afterall, aren't we? The whitecoats can talk all they want, perform their crappy studies to prove anything and everything causes autism except for vaccines and oh yeah.. there's very little hope but their hearts go out to you... Sorry! Blah blah blah.. Doesn't matter, why? Because, the window can close all it wants. I know that me and my war buddies (fellow autism parents) will always be able to find a rock. No matter how thick the glass, there will be a brick, rock, bolder large enough to smash that window to smithereens.