LIFE IS A SPECTRUM

Quite a few mom bloggers took a hiatus, or at the very least slowed down their productivity, over the summer. That's one of the reasons The SITS Girls are hosting a Back2Blogging challenge this week. Many of our kids are in school (I'm writing this while Willow naps) so it's time to build some writing momentum.

Electrolux-Set

I want them!! (Thelma and Louise)

AND we get entered into a sweepstakes to win the lovely ladies directly to the left, Thelma and Louise. As my dryer just broke and I've been hanging laundry out to dry all over the house, I would really like to bring either Thelma or Louise (whichever one is a dryer) into my home.

So each day there's a different writing prompt: Today, we're supposed to republish our first-ever blog post.

As soon as I read that, I got kind of a funny feeling in my stomach. I remember that first post. I actually wrote it long before I had a blog. I can't even remember why. My son's autism diagnosis was still new, and the “A” word still had a bitter taste in my mouth:

“Saying the A Word”
(Posted August 2009, written January 2009)

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.

S_FB_MAndiBilly

Ignoring my crazy eyes and too-long sister-wife hair, the point of this pic is that it was difficult back then to get Billy to look at us.

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.

___________________________________________________________________

S_Billyalien

It's still not easy, but sometimes he loves the camera! And the camera ALWAYS love him.

I first posted this in August of 2009, but I had originally written it nearly 8 months earlier.

Now I read those words and the anger and fear is familiar to me, but I don't feel that way any more. My recent post, “Life is a Spectrum” is a reflection of how far we've come and how we managed set down a lot of those burdens of anger and stress along the way. It's such an accurate reflection of where we are now that I decided to change the blog to that title.

A few thoughts:

I would never use the term “mildly autistic” to describe Billy any more, nor to I talk about “recovery” any more. You don't "recover" from a differently wired brain. Billy is autistic. His brain is wired differently, in some amazingly wonderful ways, as well as some ways that cause him communication challenges. He's very highly functioning, but that makes him sound like that fancy washer or dryer and doesn't do justice to the fascinating child he is.

I realize now that saying Billy didn't have “traditional autism” was just my way of showing how ignorant I was. There are as many ways to be autistic as there are to be human. And my loving, funny, brilliant, gorgeous, HAPPY son is living one of them.

Also, I now know how much I weigh. Once you've faced your greatest fears for your children, stepping on the scale isn't nearly so scary any more.

Thanks to SITS Girls, Standards of Excellence, Westar Kitchen and Bath, and Florida Builder Appliances for this little moment of time travel. It's nice to be reminded of how far my brave little man has come.

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The A-Word

I remember when we used to refer to my son as "mildly" autistic or use terms like, not "traditionally" autistic. It only took you 18 months or so to realize those terms are kinda silly and there is nothing to be afraid of the words, "My son is autistic." Congrats. It's funny, nowadays I sometimes use words like "profoundly" or "significantly" to describe my son's autism. Strange how 12 or 13 years change your persepctive. If you win the washer dryer, I'll be swinging by to run a couple of loads.

Comment

Wow what a touching first post. I am sorry you had to go through all of that but I am glad to hear he is doing much better. Look forward to following your journey!

Time Travel

Breathtaking post, Amanda. I say you've earned that washer and dryer.

The A Word

You've come so far so fast. I used to say all of the same things. It's good that you wrote that early on so that you can go back and see how far that you've come. Recovery is not the right word, but it seems like Billy has a great prognosis. All we want for them is to be able to live independently and be a fully functioning (just like the W/D) member of society. If that happens, I don't care what they call them.

Total 4 comments

I've been asked by quite a few people how I feel about the new recommendations of the American Psychiatric Association to eliminate all autism-ish diagnoses (like Asperger's and Pervasive Development Disorder) and simply call everything autism. Everyone is going to be "on the spectrum," to a greater or lesser degree, so instead of receiving an Asperger's diagnosis, a person might be described as having "less severe autism."

To be honest, I don't know how I feel about it. We have long since given up on looking for meaning in labels. There was a time when we thought the diagnosis "autism" would mean something terrible for Billy, but it doesn't. We still have a joyful, smart, funny and loving child.

And his autism is markedly different from the autism affecting other children we meet at the doctor's office or in the lobby outside speech therapy. He is highly verbal, while another child might never learn to speak. Billy has difficulty with transitions and managing his emotions sometimes; a buddy of his from therapy has never had any behavior issues. Billy has a unique set of sensory processing issues: he loves to hug people deeply but doesn't want anyone touching his head. And those issues change from week to week, as he improves certain skills, matures and develops other issues. What works on week may not work the next -- or even from one day to the next.

There do seem to be some common symptoms among people with ASD (autism spectrum disorder): difficulty with eye contact, expressive communication delays and social awkwardness, to name a few. But based on that, I should probably be called autistic too; half the population could probably fall "on the spectrum." As I've said before, if autism is a spectrum, so is "normal" and most of us could debate all day where we fall on that one.

My point is that there doesn't seem to be much point in looking for one prescription for autism. If that's their plan with this universal diagnosis, then I'd have to protest. A diagnosis of autism, in my utterly inexpert opinion, should simply be a starting point to analyzing an individual child's deficits and determining treatment for those particular symptoms.

If this new perspective makes it easier for more people to receive treatment, and to receive it earlier, I'm all for it. If bigger numbers of diagnoses mean more funding for research, again, that sounds good to me.

And if this debate means that the public is better informed about what autism is -- and what it is not -- then that's great. I can't count the number of times someone has observed Billy and said, "I would never know he's autistic." If you're expecting Rainman, you're going to be very pleasantly surprised. Rainman is about as representative of autism as a Porta Potty is of architecture.

So I'll leave the label debates to those more expert than myself. Whether the American Psychiatric Association decides to call my son's disorder autism or "Tallahassee flu," we'll still have the same amazing child and count ourselves lucky every single day.

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