Our Autistic Life

{March 13, 2010}   Beginning at the Beginning

I already knew my daughter had Autism by the time she was diagnosed, so I’m afraid they were denied the reaction expected from the announcement. But, having her officially diagnosed did have an impact! We left the Lanterman Regional Center and walked to their little outdoor fountain. I was still smoking at the time, so I sat and smoked while watching her run around the small area. As it sunk in and became the kind of “really real” a professional diagnoses grants, I suddenly felt like all the blood was draining from my body out through my feet.

My God did I need a drink to go along with that fag! Not a cocktail, but a straight up, hard ass double shot of whiskey to tide me over while the bartender poured another one!

The thing is, once you get to that place where you are pretty damn sure the previous “advice” from doctors were crap and that your tiny child would never grow out of all you have been witnessing, your drive becomes to prove it. Because, once you prove it you can take the next step and get your baby girl or baby boy help. Of course, I’m sure many before me have had the same reaction as me that day. I had the diagnoses – my proof! – but now what? The fear that slowly crept  into me wasn’t so slow in becoming terror. All I could think of then – and for months after – was how my baby would never have a normal life.

You know, there was even a point when I was overcome by tears while riding a LA Metro bus. There is just so much that I feared she would never have access to. For instance, that wonderful, horrible, and overwhelming feeling of falling in love.  Or the incredible passion that can be had when making love. Nowadays I actually hope that she’ll never desire to have sex because the way things are now, I really believe it would traumatize her. But, she does want to be a mom someday. She’s already talking about how great that would be. And, I sit and wonder if she’d be capable of nurturing a child. To nurture means having access to emotions she’ll never fully understand.

Which actually brings me back to what I was talking about earlier. My girl was born 2 months premature and due to that her pediatricians shrugged off every delay and quirk to that. And, not knowing any better, I went along with it! Hell, I was so ignorant about Autism (I’d seen one movie, like, 10 years earlier) that I would often say “Well, at least it’s not Autism!”. But, I do feel lucky to have been so ignorant because I believe I might not have gotten as far with her if I’d known sooner. I doubt I would have pushed her to speak the way I did. I doubt I would have insisted that she be physical and at least allow hugs. And, I really doubt I would have pushed her to interact with people.

In short, I think I might have really fucked up and listened to the so-called experts!

The thing is, each child is different, but I think we can all learn more from each other and from our kids than a lot of the doctors and “professionals”. My daughter’s current nit-wit teacher recently testified in court (Ugh, I’ll get to THAT in another post!) that she has experience with Autistic kids, yet in our first meeting she actually said to me that it was hard for her to see Nella as Autistic because she’s so receptive.

Ya, right. Because they’re all comatose or retarded, right? Asshat.

So, I sit and look around at the people who have actually made it their profession to help special needs kids and realise that special Ed. has become the new Congress! If you’ve been following things since the Presidential election you’ve seen the number of Congressmen and women coming out of the woodwork just to prove that being in Congress is the best way for an ignorant, racist, bafoon to make $100,000.00 a year in base pay. And, in my case I am seeing that special ed is now a job where you can excel without really knowing anything! Or, helping anyone! Therapist after therapist took the stand and lied through their teeth in order save their own ass. One actually had the gall to usurp a game I had made up to help my girl pronounce her “R” sounds! Fucker.

And, it’s things like that which have me writing this blog. I hope it catches on with the folks who could really use it the most – parents who are right now where I was two years ago! Parents trying to make sense of it all and overwhelmed by all the information out there. I’ve made plenty of mistakes, but more often than not I’ve actually managed to get it right and want to share that. I won’t get into the whole vaccination thing because I don’t believe it’s responsible for me to say one way or another since I’m not a doctor. But, I can be (and will be!) very vocal about IEP’s, mean kids, OT, cozies, and the tons of other things I’ve learned the hard way. If I can do one thing to make this brave new world of yours a bit easier I’m glad to do it.

For instance, you may be interested to know that – while it did take nearly a year and a half – I have come to see my daughter’s Autism in a different light. Not only do I believe she will be able to live out in the world on her own, I look forward to seeing her on the news once she becomes the astronaut she’s determined to be. I’ve also come to see just how lucky I am to be her mom. She’s so freaking cool and reminds me daily how precious life is – how precious love is – how precious our time on earth is. Though I do get frustrated by daily irritations like everyone else, she quickly reminds me of how cool our life really is and that it’s up to us to decide what is crap and what we’ll do about it. For me, I plan to enjoy the ride.


et cetera