Tuesday, February 1, 2011

Posted on a friends Facebook wall…

Posted on a friends Facebook wall…

• “Kids with special needs aren't sick or gross. They only want what everyone else wants, to be accepted. Can I make a request? Is anyone willing to post this and leave it on your status for at least 1 hour? It is special education week, and in honor of all children made in a unique way. You never understand a situation until you are faced with it.”

I struggle with these when they come up. I honestly do feel my child with Autism is physically sick which causes his autism, and I understand the underlying message is to get our kids accepted. Unfortunately I think sometimes these messages send a silent message that those of us trying to make our kids healthier or look for recovery or a taboo "cure" are not “accepting” of our kids being themselves and being accepted in the real life community. I think that is a huge misconception. I don’t think that is true for Austin Primer.

I am looking for recovery and I am looking for acceptance in Austin’s social community, which today is his elementary school. I think our teacher Liz O. and her wonderful support staff would agree, Austin has at least 60 peers who know him and understand that he has Autism after almost 3 years of partial mainstreaming. As he continues through Elementary school there should be at least 120 students who have come in direct contact with Austin and will know how to deal with Austin in social situations outside of school, such as football. A great example of this is a girl named Dallas. Dallas attends lot of high school football games (my husband is a HS teacher and football coach) in our town and is also in Austin’s 2nd grade mainstream class. Austin has attended HS football games since his 9-1-2001 birth.

Unfortunately this is a good thing and a bad thing for Austin and may be a different blog, but back to this blog and ACCEPTANCE…

This year everything changed at football. All the games that Dallas is at she runs up and talks to Austin. The absolute joy on his face, the fact that he waves (says hi) without prompting to Dallas shows he gets it, she gets it, and bottom line he ACCEPTED. I can tell other stories of these types of things in public due to being with these two awesome teachers, the Special Ed teacher, Liz O. and the awesome mainstream teacher, Caitlyn C.

My child is not the child he was 6.5 years ago, he is far from the recovered child!!!

He is still the “pre” verbal (yes otherwise known as NON VERBAL, but I have decided to take, author Kim Stagliano’s way of thinking, that we are homo sapians and we have the ability to speak, so I have a child with Autism who is “preverbal. Even though he is “preverbal, Austin is now part of MY/YOUR world and no longer only in the “world of Autism”.

The short story of change for my child is that before TACAnow.org and all they have taught me to help his health, is that he used to think of people as the same furniture, we meant nothing to him. He spinned, ran into walls, colored and ignored us the 22 hours of the day he was awake. His one and only Neurologist told us to “go home and learn to live with it, this was the rest of our lives”, oh did I say we had poop smears on the wall at this point in his life?

I’ll say it once, I will say it a million times, that is NOT my life! I refused to accept it then and I refuse to accept it now. Again, I DO NOT HAVE A RECOVERED, CURED, NORMAL, WHAT EVER WORD SOMEONE IN THE PRESS OR THE AUTISM COMMUNITY AGREES WITH.

What I have…

Is a different child and I am ok with having a different child.

Within a year of starting the GFCF diet and enzymes all of those things STOPPED! He slept through the night, he began to realize we were people, he stopped coloring, etc. Today 6.5 years ago he recognizes people; it is the most awesome feeling to get eye contact and a huge smile when I pick up from school.

WHAT I AM NOT OK with is sitting back and accepting “this” life for me, for Austin or for his siblings. I loathe parents who think that this is the lot they are given and they accept what is. Even if diet does not work or you’re not willing to try it, you better be willing to step out of your comfort zone and get your child the services they need. With 1:110 children with Autism you should not assume gets your child acceptance and you should not assume the Facebook wish is either. The way you get your child acceptance is working on all the things I and other parents work on. You work on making your child health, you work on their social community and you work on you and supporting you with a community like you.

1 comment:

  1. That status had to have been written by a parent who wants to do NOTHING!! I can't imagine giving other people, much less myself, permission to just accept how things are for my boy and move on.
    I hate the statement that ,God only gives us what we can handle, or that God gives special children to special people! Bull Shit! God gave me a perfect being...Man gave me Autism.
    Keep pushing forward for your boy Shannon. Everything you do brings him closer to the very best he can be.