November 11th, 2010

That is the day that everything became official. The day our recent concerns were given an official diagnosis-Autism Disorder. 9 days ago. It's still kind of surreal even though it was expected. Everything went really fast, honestly.

Some back story-
Rocket came into the world on August 23rd, 2008. He was too impatient for us to make it to The Birth Center, and Daddy ended up delivering him in the passenger seat of our minivan-which was forever after known as "The Birthmobile." It was a quick and easy birth, actually, and he even scored 10 APGARs from the EMT's who arrived shortly after his birth. ; )

He developed normally, was on schedule or even early for everything other than talking. It was odd when he wasn't using any "real" words at 1, but we figured well, boys often talk later than girls. At 15 months, it was more concerning. By 18 months, it was very concerning to us, not only because of the lack of words, but because of the lack of communication, period. The only way you knew Rocket wanted a drink, for example, was when he threw his cup at your face. ; ) There was no looking, no pointing. We talked to his pedi, called EI (Early Intervention) and it took a few months to get them out. His evaluation with them was when he was 22 months old. At that time, it still looked like more of a general speech delay and no one was talking Autism. He got approved for speech, Kaiser dragged their feet on sending the denial letter, and he finally got started with an in home speech therapist in August, when he was 2.

She sucked. And that's being kind. ; ) She was a flake and a half, and out of 7-8 sessions that he SHOULD have had, she showed for 2. So we talked to EI and got him set up with a clinic based setting. I wasn't too thrilled about the weekly drive with a baby who seems to loathe the car, but what can you do? There were no more in home people available and he needed speech therapy. It has ended up being the perfect place and setting for him though, and he and his speech therapist are buddies. They even sport the same hair-do sometimes ...pretty sure they bonded over it one week. ; )

So we're up to the first week of October, now. 4 months since the initial eval with EI. He's had some speech, and no verbal progress. He's actually regressed. He's lost most of the few words he did have. We're noticing a lot of other things, too. He rarely makes eye contact. He has these little rituals he does daily, mainly dealing with lining up objects, or grouping them in designs, and he gets EXTREMELY upset if they're disturbed. He won't let anyone play with him unless it's a game of chase or something similar, and he doesn't seem to notice other children. He screams if you try to read a book to him, yet he can spend 2 hours lining up, dismantling, and re-lining up water bottles or blocks.

We bring up our concerns at the baby's 9 month checkup, which also happens to be The Hubby's 40th birthday, October 29th. Ped says she'll talk to the developmentalist, who is so concerned by what we've described that she calls me the following Monday. (This is pretty much unheard of in our 12 years with Kaiser.) She refers us to their new Autism Center, who also calls us right away and schedules his evaluation on November 11th.

It was about 4 hours, total. We were both so nervous going in, even though we knew it was coming. At that point, honestly we were almost more worried about NOT getting a diagnosis. Then what? Then what's wrong? Because something was obviously "off."

Well meaning friends and family were like "oh, I'm sure he's fine! He seems like every other kid I know." Well, when you know what you're looking for, it's PAINFULLY obvious. We knew within 10 minutes of the actual ASD eval that he'd be diagnosed. It was really sad to watch. Hubby stayed with him in the room with the doctors, and I was on the other side of a one way mirror with the baby. The sound was really amplified, and it just kept coming-one doctor was on the floor with him at this point, another taking notes. "Eye contact with that?" "No." "Brief eye contact, but not meaningful." "No eye contact." Etc. etc.

They were very kind, of course. We took a break to give them time to score and we met back up and they said "unfortunately, your concerns are founded." One doctor, the one who was on the floor with him, said that when he does make eye contact, "it's beautiful, and it just melts your heart, and we want to see so much more of that." I'm tearing up just thinking about it. Because it is truly beautiful, and we've always just taken it for granted with our other children. But when it's not constant, it's almost like a precious gift ...one that I know some other parents with children on the spectrum don't get. : ( There are periods, usually at least a few a day, where Rocket *really* see's us, where he's SO there ...and he looks AT you and not through you, and his face lights up and his eyes sparkle and it just lights up the whole damn room and you feel like your heart is going to burst, it's so full of love for him.

So here we are. 9 days later. We have some hoops to jump through with Kaiser-all just for them to deny his services. They're special like that. While the kid's ped is amazing (and the reason we keep Kaiser for them), and everyone at the Autism Center seems great, Kaiser really does nothing for kids with ASD other than diagnose them and send them on their way. He's had his massive blood draw done (they're checking for lead and other toxins, for Fragile X, his thyroid, and tons of other stuff), his formal speech eval through them, and his OT eval with them is on the 29th. Then we meet with EI again on the 3rd of December, and hopefully get more therapies going. None of which Kaiser will cover, and we have no idea what EI can provide.

This is just the beginning of our journey. No matter what, he's our Big Guy, our Rocket. We will do everything we can for him. Most importantly, we will love him, always.