LIFE IS A SPECTRUM

For the past 18 months, we've been chasing a diagnosis for Billy's delays in speech, his differences in motor function, his quirks of personality. My emotions have run the gamut from an extreme skepticism that there's anything "wrong" with him to a growing fear that our early doubts are entirely justified. I've worried, cried, screamed and pleaded with insurance companies, prayed, laughed at myself, and started the process all over again.

Actually, if I'm completely honest with myself, what I've been looking for the past 18 months, is an expert who will say, "Your son is definitely not autistic." I would demand of the therapists and doctors, "He's not autistic, is he?" because to me, that meant the end. That I would lose my son. That he would slip away from me and lose his smiles and affection and love of life -- all of which he has in spades.

Well, Billy's three now, and he's not slipping away -- but some of his differences from his peers have become more apparent. He's a bright, beautiful, extremely funny boy. He has an amazing memory and vocabulary. He can answer the question, "What is that?" almost every time. He recognizes animals, plants, people, the planets, food ... but he can't tell you what he did today, what he likes to do, what his name is. He doesn't ask any questions. He spends most of his time repeating entire books, the dialog of a whole cartoon, the question you just asked him.

I know what you're probably thinking: "All kids develop differently. Don't worry about it. Let him develop at his own pace ..." Believe me, I've heard it all. I've said it all to myself.

He can sing beautifully -- perfect pitch and rhythm -- has a catalog of over 100 songs that he knows, and he loves to dance. But he'll have a complete meltdown if you touch his head or offer him anything to eat except macaroni, oatmeal or chicken nuggets. A symptom of his sensory processing problems is his *extreme* clumsiness. It's like he's always looking at where he wants to be, rather than where he is, and he'll fall over the huge coffee table -- which he doesn't see -- in his desire to get to his ball on the other side of the room. He didn't see the edge of the slide, and he fell off and got himself five stitches.

It's not traditional autism. Or at least what I've always believed autism to be. He's loving and affectionate and emotional and funny. But communicating is incredibly difficult for him. It's like he has all this information locked inside him, and he can't make sense of it. So what comes out, instead of what he wants to say, are these things that he's memorized.

So on the advice of a neurologist, we went for an MRI. It was a harrowing experience. The drug they gave him to sedate him had hardly any effect, and when they put in an IV, a meltdown of Armageddon proportions commenced. The results of the MRI: nothing physically wrong. So we get our diagnosis: autism.

I asked our OT, "Is that what autism means now? A lack of brain tumor or seizure disorder or stroke? None of that and you're suddenly autistic?"

She was kind when she responded to me. "No, Amanda. There are benchmarks for communication delay, motor problems and behavior issues -- and Billy meets all of those."

Oh. OK.

I can say it: My son is autistic.

I'm lucky. He's only mildly autistic. Most of his problems are sensory-related. And she's quick to point out that with therapy, he probably has a very good shot at a complete -- or near-complete -- recovery. That's a word that didn't used to be used with autism.

I don't know why the word bothers me so much. It doesn't change the person that Billy is. He's more than a diagnosis. He's a fantastic boy that any mom would feel lucky to love. I guess it's kind of like the way I don't want anyone to know my weight. The number doesn't make me fatter, but I'm not exactly going around with it scrawled on my forehead.

Every day I question every instinct I have, every treatment decision I've made for Billy -- every decision I make full-stop, for both my kids. But I'm starting to see that that's just part of being a parent.

But the A-word doesn't scare me any more. Much.

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Shout Out from another Blogging Floortime Family

We're in a similar boat, though Hallie has more immediate echolalia than delayed and is less verbal (by far) than Billy. But she is also HFA and we had to chase the diagnosis and floortime is also helping her A LOT. For whatever reason, I can't post on the floortime yahoo site, but I saw your post today and we, too, are big fans of Both Hands and A Flashlight.

We're also big fans of blogging and do so at blogginghallie.blogspot.com

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