Saturday, October 13, 2007

Louder Than Words

Wow.

This book couldn't have come at a more opportune time. I feel like it was written just for me. Evan, her son, is Jayce, just minus the seizures (Thank God!)

The similarities between Jenny's son and Jayce were pretty astounding.

I know... you are sitting there thinking, "Wait... doesn't Jenny McCarthy's son have Autism? How can he be like Jayce then? Jayce doesn't have Autism!"

Yeah, I'm hoping you are right. Praying that you are right. With every ounce of my being. After all, he's certainly not like the boys I worked with in college who had Autism. Jayce doesn't head bang, or spin, or rock all day in a corner. He's bright, affectionate, can make eye contact. He just has a speech delay, right?

Unfortunately, (or fortunately, depending on how you look at it), Autism is such a broad diagnosis nowadays. On one hand, it puts needless fear into the hearts of many parents who immediately start thinking that their child is going to be institutionalized later in life. After all, there is no "cure" for Autism. On the other hand, labeling a child as having an "Autism Spectrum Disorder" opens up so many doors for therapies and interventions. And it seems as though these kids need the intervention, despite being "high-functioning".

We won't know what "label" Jayce has until we get our appointment this Spring at the CARE (Center for Autism Resource and Evaluation) team in the next town over. And most likely, he will be getting a label. There are just too many red flags.

That's part of the problem, I think, when it comes to evaluating young toddlers. There are so many different characteristics that can point to Autism. You can take two children, both diagnosed with an Autism Spectrum Disorder, and they would be completely different. One would be verbal, the other not; one could have excellent motor skills, the other one with an obvious delay; one child suffers from seizures, the other from chronic immune disorders; one child has sensory issues galore, the other child is oblivious to sights, sounds, and smells.

That's why I was so shocked at the similarities between Jenny's son Evan and Jayce. But she did as I did... she had an excuse, reason, or answer for all of her son's "quirks". When you dissect the behavior of child with Autism, each little thing by itself isn't so "abnormal". Some of it can just be chalked up to typical two year old stuff. Its when you start adding up all those quirks, or looking at their intensity, or looking at its frequency... then you kinda can't ignore it anymore.

Jenny mentioned that her and her husband used to predict that Evan was going to be a mechanic because he just had to know how everything worked. If I had a dime for every time me or Brian said, "Wow, Jayce is definitely going to be a computer programmer! Just look at how he loves computers! Always has to be pushing the buttons on them!"

But it wasn't just pushing buttons. It was the impulse to watch the CD-ROM drive open and close and open and close and open and close. And then there was the toe-walking and hand flapping that he did while he watched it. "He's just excited," my mom would say. His pediatrician said that it was not considered a self-stimulating behavior because it "had a purpose" (his OT has since told me that she was wrong). While Jenny referred to her son as a "Little Bird", Brian's co-worker has given our son the nickname "Chicken" because he flaps his arms and hands like a chicken.

And then there was the fact that by the age of 20 months, Jayce knew all his alphabet letters, numbers, colors, and shapes. He had such an awesome memory (well, he still does!). All you'd have to do is show him something a couple of times and he'd remember. Same with music. At age 14 months, he could sing the entire ABC song. So I guess I'm not surprised that my pediatrician was so reluctant to say he had a speech delay after seeing that! But now I know that this early memorization is called hyproxia and may mean that Jayce will be able to learn to read at a very young age. The way he looks at Jaina's sight words taped to our wall in the kitchen, it would not surprise me one bit.

Like Evan, Jayce sees the world in shapes and colors. Its how he organizes his perceptions. Its not a ceiling fan, its a circle. Its not Anthony Wiggle, its just blue. That was my first clue that something was wrong. Here was this amazingly bright toddler who knew at least 100 words, but couldn't put any of them together.

Then I realized that all he knew were nouns. And 3 verbs. Yet he couldn't put those nouns with any of those verbs. And then I realized that he was just repeating what he heard from either me or a tv show (called Echolia and also "movie talk"). He honestly had no clue what those words meant.

I've always known that Jayce's receptive language was different than Jaina's. Since I choose to nurse my children well past their first year of life, I've had to practice gentle "nightweaning" to impress upon them that nursing was just fine in the day time, but night time was not for nursing. Most children can understand this concept at age 15 months. Jaina was 19 months when we night weaned. I attempted to nightwean Jayce at least 4 times between the age of 12-24 months. We finally just fully weaned (day and night) 3 months after his second birthday. He is just NOW understanding that when it gets dark outside, people sleep.

Sometimes I wonder if I am reading into all this. Am I looking for ways for Jayce to be diagnosed with Autism? Why on earth would I do such a thing? Yet, here I find myself listing all the things that make him different from typical kids all the time. No one wants to believe that he could have Autism. And when my well-meaning friends say this very thing to me, I feel myself getting defensive and start naming off why I think Jayce is going to be diagnosed with an Autism Spectrum Disorder. This is crazy?! What am I really trying to prove? That I'm right and all these people that see my child for 45 minutes at a park once a week are wrong?

And then my sanity returns (if I ever had any to begin with!) and I realize that it doesn't matter what anyone else thinks. I know my child better than everyone. I see all his qualities day in and day out, good and bad. I know he needs therapy and intervention. His ST, OT, and EIC agree, but at the same time, are very positive and optimistic that he'll loose any label he's given by age 6. I'm going to hold them to that, okay?

My good friend from my AP board told me, "He's still just Jayce". I have to remind myself that every day. He's not a label. He's not a diagnosis or a disorder. He's my baby and he's as perfect as he can be. I'm just getting him a little extra help for him to glide through life a little easier.

3 comments:

  1. you know jess, i worked with kids with autism before i had my own kids. and you're right, the spectrum has widened so much and includes kids i would never have thought of as autistic. but in broadening the spectrum, the number of families able to receive early interventions and benefit from learning together has also increased. jayce is such a beautiful child. and he has such a beautiful mother....

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  2. He is very lucky to have a mother that is so caring and PATIENT! You are doing an awesome job-and you're right-he's still your jayce. If he were different, he wouldn't be the sweet little boy that you love....does that make sense?

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  3. I hope I'm not overstepping, but I think what you're doing is so great! You're Jayce's mom and you know your own child better than anyone else (even the drs.)! You're not in denial like some moms might be; you're learning how to help him whether he is diagnosed with autism or something else or even if he outgrows these little quirks. I respect what a great mom you are! Stick to it, Jessie!

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