Sunday, May 25, 2008

Soundbites from the Shark Part 1: In which the hero reflects on exiting the womb.

People have often told me to write down the various funny, wise, or interesting things Sharky says. So I figure a blog is as good a place as any to jot these down. They come on at least a daily basis. Already today he came up with one while showing a picture of one of his friends to his cousin Alex:

Sharky: Look Alex, it's (Jeremy)

Me: Alex doesn't know who Jeremy is Sharky. You have to tell her. Who is Jeremy, Sharky?

Sharky: Ummm...He's a screamer.

But the story I really wanted to commit to print came about a week ago. Sharky was looking at pictures from the day he was born. He noted that we were in the hospital and there were doctors, and I sensed he was worrying that his being born was somehow associated with illness. I explained how some doctors aren't for sick people, but to help babies to be born.

Sharky said that the doctor helped get him out of daddy's tummy. I told him he was in mama's tummy, and he said "yeah, and daddy's tummy too!" I suppose he imagines our shared custody arrangement was in place even before birth.

Then I said, "and when you came out of mama's tummy, you said, 'ahhhh!ahhhh! I'm cold! It's too bright! Ahhhh!' And I held onto you and I said, 'It's OK buddy, I got you, I got you, you're all right.'"

Sharky looked at me in stunned silence. He turned around and ate some grapes quietly for a while.

A few minutes later, he walked over to me and placed his hand on my shoulder, and said,"Daddy, I so sorry I have to miss my mama's tummy...It was just too cold in there...yeah, too cold."

This exchange illustrates for me a typical understanding reached between Sharky and I, and probably for lots of parents and their children with autism. The details are somewhat skewed and the understanding may not be literal, traditional, or linear. However, there is an understanding, possibly a deeper one, that always seems to grope the sides of some elegant form of truth.

And I hereby publicly forgive my son for leaving his mother's womb. After all, we know how cold wombs can get in July.

6 comments:

mitzi said...

I've just found your blog and I wanted to let you know how much I've enjoyed reading it. You describe your love for and bond with Sharky so beautifully that it's bought a tear (or several) to my eye. I have an autistic son, George, who's four and a half, and I understand exactly where you're coming from although I've never managed to put it so eloquently. I shall definitely be keeping up with Sharky's story!

Michelle said...

Thank you for sharing your story! I truly feel that the more parents speak out the more the voices of our children will be heard.
My oldest son was dx'd with Asperger's & Tourrette's at age 11. Until then no one had even suggested Autism. But looking back all the signs were there. He is 13 now and we are still fighting for those "early interventions" that never happened and don't seem to be available.
My 8 yr old son shows almost all of the symptoms my oldest had at his age, but since he too can communicate (unless he's upset) No one will give him the label of Autism and therefore he receives no help.
My 10yr old son suffers from extreme anxiety due to struggling with his older and younger brothers on a daily basis. And just for fun we also have a 5 yr old daughter that we joke has Princess syndrome. :)
We live in central WA now (Tri-Cities) after spending 10 years in the Navy collecting bad medical advice, botched surgeries, over exposure to meds & chemicals, and a multitude of other ailments.
Unfortunately the medical help here is years behind and understaffed and the school district's answer to everything is "but they're still progressing so we don't need to help."
All of this (and my complete lack of sanity) have led my children to nickname me "Crazy Mom," which has been the best outlet (www.cheldesign.com) for me combined with my own blog.
I wish you and your family the best and hope that someday soon the state of WA will catch up with the reality of our children's health.
~Michelle
aka Crazy Mom

ted said...

Thanks Mitzi. I'm always happy to hear people like what I'm doing. I hope you will check in. Best to you and George.

ted said...

You're welcome Michelle. I am always awed by those managing to raise more than one child with ASD. There was a reader comment made in the Seattle PI about the article on Sharky that was interesting. I thought it might be of interest to you regarding the child without a diagnosis. I have no idea of it is true or who made the comment, but here it is:

"Luckily for us, I used to work for an insurance company and know the games they played. We have avoided for as long as possible getting a diagnosis because there is a state law that insurance companies MUST cover children with neurological delays. Autism is classified as a untreatable syndrome and thus is exempt from the state law. If the insurance companies hadn't paid, the bill would have been over $150,000."

Michelle said...

Wow, that's interesting to know. I have felt all along that the insurance and the school district are dancing around me in hopes that I don't figure out the rules. It stinks that it's taken me 13 years to figure out most of them and my oldest is still not receiving proper services.
I've found it odd too that when your child is diagnosed with cancer you are given a stack of brochures and a list of doctors that can treat them. When your child is diagnosed with Autism, or any other neurological disorder, you are basically told "good luck" or you are given a list of what you should and no direction as to making it happen.
I spent this last week fighting for meds and counseling for my anxiety ridden child. The neuro-psyche recommended both but couldn't give me either. The pediatrician wants to do his own complete month long eval and is pushing for ADHD drugs, all the while telling my son he needs to "get over it." A lot of help that was.
This is one of those times when I wish my 4 children were older and I didn't work so much so I could be out doing something to fix this mess.
Hopefully the little bit I can do will change the world around me just a little.

Danyelle Ferguson said...

Hello. I just found your blog, too. I love your story about the womb & our kiddos mixed understanding of the things we tell them. Thanks for sharing!