Saturday, April 5, 2008

How my eyes were opened.

Here's a little story about Autism awareness that hits close to home, because it's about me and my journey.

At about age 2, I began to notice that Jaysen didn't have the language skills that other kids his age did. Like many other parents, I brought my concern to the pediatrician, who told me not to worry because kids all develop language at their own pace- but I should stop trying to teach him Sign Language, just in case it was hindering his verbal language. Okay- I bought that for the time being, but it was still in the back of my mind.

When Jaysen started daycare at 2 and a half, I remember telling the staff that he has a pretty significant separation anxiety, has trouble with transition, and not to worry about his video tape- he just likes to carry it around.

About 6 months later, the staff approached me that although he was very smart, Jaysen didn't like to do things with the rest of the group, and did not like to follow direction. They too were concerned with his language development. I took him to see the district speech therapist, who diagnosed him with Hyperlexia. He did not begin therapy because she too, felt that he was still too young for concern. I researched Hyperlexia, and it fit like a glove.

As time went on, the daycare became more concerned. He did not eat like the rest of the kids, and was starting to exhibit meltdowns, and had I had him evaluated for Autism? I was extremely offended that they would even suggest that my son was Autistic. I've worked with Autistic kids for 6 years, and although they were awesome, it wasn't what was going on with my son. I knew something was going on with him, but it wasn't Autism. I took him to a pediatric neurologist. She talked to me for 15 minutes. Aspergers.

Asper-who? I started my research on Asperger Syndrome. It didn't fit. How could my son have Asperger's when one of the distinguishing characteristics was excessively loquacious? My son wasn't speaking more than one word requests.

I took him for another eval at another speech therapist. Expressive and Receptive Language Disorder. More research. Ahhh...this seemed to fit better. He started therapy. This SLP was wonderful. Jaysen loved her, and she worked really well with him. She had countless exercises for us to do with him at home, and the echolalia gradually began to fade. Real words were emerging.

Time went on with this therapist. It got to a point where Jaysen's behaviors were impeding her progress with him. He began working with her OT partner for sensory integration. They said he was quirky, and may be a touch on the spectrum, but it could also be that he would always just be quirky. They suggested I take him to a psychologist that they knew, who specializes in behaviors, just to see if it was quirkiness, or something else.

My initial meeting with this psychologist (who is also wonderful), was about Jaysen's history, development, and an all around feel for the type of kid he is. I expressed my frustration with people and the Autism thing. I never bucked these diagnoses because I didn't believe my son had issues, I just wanted to make sure he had an accurate diagnosis.

I asked him, "why can't he just be a Hyperlexic kid, has a language disorder, some OCD's, and sensory issues?" He said "He can. When those things come together, it's referred to as an Autism Spectrum Disorder."

And that was my A-ha moment.

He went on to explain that Autism wasn't the classic Autism that we all thought of. That it is a spectrum disorder. He explained the spectrum, and how these children can vary in areas across the spectrum. He explained stereotypes- "Flapping" didn't just mean flapping your hands or parts of your body, it was also those repetitive behaviors I assumed were OCD. Jaysen's official diagnosis was PDD-NOS but that's not the point of this post.

It took the right person to explain to me that Autism is more than the Autism we knew 10 years ago. It's more than a checklist of characteristic attributes. As I researched, it became clear. I understood the spectrum.

I became aware.


Jodi said...

I've had a few of those "ah-ha" moments myself. Nice post.

Casdok said...

Its an interesting journey that we take with our children, full of A-ha moments!

Anonymous said...

there is so many a~ha moments to come.Our children will never stop amazing us:)

A Bishops Wife said...

Very,very good post.

Mary P Jones (MPJ) said...

I had one of those ah-ha moments too around my son's eating issues. I also resisted the autism label because he didn't do the things I thought of as autistic -- he was just a quirky kid who didn't want to play with others and had a speech delay and sensory issues and OCD. It seems clear to me now, but it wasn't then. Thanks for the post.

Marla said...

Thank you for sharing more of your story. Very good.

GFCF Mommy said...

Great post! Our A-ha experiences are very similar.


Anonymous said...

I think that may be some of the reason that I never figured myself for this dx before now.

BTW, I have bestowed a prestigious award upon you. :P

Anonymous said...

Wow...that is SO similar to our story. And I LOVE the way the doc described the coming together. But I do have to admit, the hyperlexia is the most fun part. :-) We've had (as I'm sure you have had) some pretty entertaining moments with that one.

Glad to find you!