C's story by Jen

It's a story that has been told before, uniquely his, and yet so similar to the rest of these children of autism. He was born healthy with 10 fingers and 10 toes at 8 lbs and 2 oz and I thought we were solid. He came home with us, slept in the little bassinet, nursed well, slept well and developed right along the continuum just like his older brother. He flipped over even earlier than his completely neurotypical and perfect 2.5 yr old brother and he was sleeping though the night by 10 weeks. At six months, he was cooing da-da and ba-ba and watching brother play. At the six-month well check he looked like a perfect little dream. Yes, doctor, yes, he's doing ALL of that! But, that's where the baby book entries just stop. There was no more talking, there was no crawling, the sleeping through the night was a thing of the past.

A week after he was so perfect at his 6-month check-up, he got croup and then we spiraled down. The croup came and went, but odd stomach bugs followed and very restless nights. We didn't hear the da-da and ba-ba anymore and we were told that he was too focused on motor development for now, but the speech would come after the crawling got underway. When the crawling didn't come by 9 months, one pediatrician started to suggest the possibility of early intervention by 12 months. I called early and got him evaluated thinking of they could help him with crawling then, why not? He was very frustrated by it. To my shock, he tested within normal range for gross motor, but delayed for SPEECH? Huh- at 10 months?? So, we proceeded with a PT to help with crawling (which was supposed to indirectly help speech by getting the motor skills underway??) Then, by 11-12 months, the crawling finally came, followed by walking and climbing. By 15 months, we were discharged from PT to speech, but then referred to a behaviorist and OT by 18 months b/c the speech therapist could make any headway when there wasn't any engagement.

So, there we were, by 15-18 months we definitely had a child with autism that was visible to the experienced person. Both the OT and behaviorist knew it, but knew that I didn't know and honestly, didn't WANT to know it. I kept hanging my hat on all of those "my son didn't talk until he was 5 and now he's [fill in success story]" anecdotes. The lacking of pointing and name response? I didn't see it. I had another child and I STILL didn't see it. We ultimately got him diagnosed at 24 months at our local Children's Hospital. They did about a 4 hour team evaluation and we were to return a week later for the findings. I didn't get it and I wasn't ready. Autism, to me, was some kid sitting in a corner, rocking and banging his head on hard surfaces. This wasn't my kid, it had to be something else. Some weird speech delay that would go away once words came.

He was so young that I almost didn't take it seriously. I pretended that an ASD diagnosis wasn't REAL autism- it just shared symptoms. I would find that thing that would work for him and by three, he'd be all better. I immediately met another mom with a similar aged son who tried GF/CF and the kid got remarkably better within months. Tons on therapy too, but I met this kid and he was FINE before age three even rolled around. Then, I met another mom through my OT and her kid's ticket out was the B-12 shots. He just "came out of it". I heard this from both his mom and MY OT. So, I went to find their magic. I got a DAN and did the diet and tried the supplements. I did the diet for a year and tried the supps, but I became very frustrated with how to get this 2 yr old to take this stuff. I left the DAN without any real satisfaction and tried this other program for brain injured children. They supported the diet, so we kept up, but we let the supps slide b/c it wasn't part of their program and we wanted to really put our full efforts into this program. That program didn't end up being a great match for us after a few months, we we had to begin again.

Now, my year between diagnosis at two and the third birthday was nearing and I hadn't gotten very far. We've had some words, but not close to age-appropriate and we didn't engage much at all. Early intervention was ending and we were moving to a new state and we had to make the school decision. So, I take on a private ABA program for the summer before the move, right after he turns three and I explore auditory therapy. We move and I enroll him in an autism support class (and I hate every minute of it b/c this is where I have now failed to get him OFF the GD spectrum.) It is at some point here that I wake the f--- up and realize that I'm going to have to ramp up my efforts and get this kid recovered, b/c NO ONE is going to do it for me. Modern pediatrics has NOTHING to offer me, teachers will only get him so far and no one else is this boy's mother. So, I end up meeting these other three moms through a yahoo support group and we all end up at the DAN conference. By birthday four, I am reinvigorated on biomedical and anything else I can get my hands on, I have three very awesome friends who can say "I know how you feel" and they're totally serious b/c they too deal with a son with autism and I've quit my job so I can focus on beating the shit out of autism. I have a husband too and he's one of the good ones. He's been right there, all the way and is immensely popular with our son. He supports everything that I want to try and has his own notions about what may help. I think he's more into acceptance than I am, which is good, because he helps me there. But, right now, I'm not about acceptance. I HATE autism, I don't embrace it. I don't want to accommodate it. I want to get rid of it. Believe me, I understand that my son HAS it. I deal with it at every turn, in every parking lot, in every grocery store, at every birthday party, at parks, at restaurants, at family events. I SO get it. Here's what I don't accept- that it's here to STAY and that it's an innate part of his person. It's NOT who he is- it's a barrier to who he is. He is the little boy smiling at me, running gleefully through the woods, eating chocolate chip cookies (GFCF) and swimming in the pool, but HE IS NOT AUTISM. I love my son desperately, but I hate the autism that's got him and I want to kick its ASS.