Tuesday, April 7, 2015

Dear Governor Rauner


Dear Governor Rauner-


I hated more than anything what my eyes read on the computer last night. As I read the words that you were cutting The Autism Program of Illinois, I have never felt so alone, angry, and betrayed before in my life.

I asked myself a hundred times in bed last night, “How can anyone do this? Who would do this? What kind of a person would do this to innocent children and families?”  Please let me take a few minutes of your time to tell you what kind of person does this…..

A person who has never seen their child suffer does this kind of cruel thing! I bet you have never suffered through a two hour meltdown with your non-verbal child. Oh wait…your children have the gift of being able to communicate, right? Do you know how blessed you are? I watch my child have daily tantrums because he lives in a body where he can’t express his thoughts. He knows in his mind what he wants but he can’t express it. Therefore, he gets frustrated when I cannot figure out what he wants. His frustrations lead to meltdowns. Do you know what a meltdown is like with a child with autism? It. Is. Hell. On. Earth! I repeat, HELL ON EARTH!

A child with autism who is having a meltdown cannot control themselves. I know it looks like they should be able to because they look so “normal”, but they can’t. They do not have control of their behavior. With that said, I have been hit numerous times. I have been kicked numerous times. I have been scratched at numerous times. My hair has been pulled out in chunks. I get bruises on my body. I get pulled muscles from trying to control my child. 

I handle these meltdowns while being sleep deprived. My children with autism have sleeping problems. Do you know what it is like to go 48 hours without your head hitting a pillow to go to sleep? Do you know what it is like to handle meltdowns  daily while going on NO SLEEP? Do you know what it is like to drive in your car for hours on end while your child is screaming and crying from his car seat in the middle of the night because you have exhausted every other idea on how to calm your child down? Do you know what it is like to be up the ENTIRE night and get behind the wheel of a car and drive your child to therapy 45 minutes away because that is the only place that offers therapy close to you?  Do you know what it is like to watch your child hit himself in the head repeatedly?

What would you do if your wife had to still change diapers on your almost 5 year old son? What would you do if your wife could never go in public because one of your children couldn’t manage this world because his body takes in the world much differently than we do?

Do you know what it is like to never be able to go out as a family? Do you know what it is like to not be able to take your child to McDonalds? I’m not asking for a five star restaurant, we just want McDonalds!!

Do you know what it is like to have a child who HAS to have a sensory diet in order to make his day just a tad better for him? Oh wait…you are probably asking what a sensory diet is, right? Well look it up! I can name you off so many other terms that you don’t know anything about because you must not live in the kind of world that I do. You see, there is a large group of people in this world that has autism and that lives with autism. We are the ones who watch our children suffer. We are the ones who fight with insurance companies in order to get our children some much needed help. We are the ones who know what it feels like to raise a child in a world where “different” is not accepted.

Mr. Rauner, let’s pretend one of your children was diagnosed with cancer and they needed the correct treatment in order for them to live. However, the treatment wasn’t available because it was decided that it just wasn’t important enough. Someone along the line decided it take it away. Now, your child is left to what????!?!?!? Nothing.  You are left with not being able to do anything for your child. You can put yourself in any situation….pretend your child was in an accident and needed physical therapy to make his/her legs walk again. But no…..no therapy because the state doesn’t provide it. How would it make you feel?!?!?

Please tell me, what is the difference between those situations and a child who is born with autism? A child with autism deserves to get the best treatment that he/she can get. Yes, that means they need a much different approach in life to make them functional. If children and families cannot get this in Illinois, what are they going to do? You are only setting them up to fail! These children grow up to be adults. They need help so they have a CHANCE to be functional…so they have a CHANCE to maybe not live in a facility one day.

With everything that I have said, I still haven’t told you the one thing that is the hardest to live with. I have to live with the thought daily, “What is going to happen to my child when I am dead?” You, Mr. Governor, have no idea of the daily pain and anguish that parents of children with autism live with on a daily basis. Programs, much like The Autism Program, provided hope to families and eased that question just a little bit.  You, Mr. Governor, took that away. Shame on you! You took away innocent children’s right to the best functional life that they can have and I am sure you don’t feel the least bit guilty. After all, if you have gone through anything close to what I have mentioned, you would not have done what you did.

My family had to move from your state to Indiana in December in order for my son with severe autism to get the best chance at a functional life. It tore me to pieces to move away from my home state. Now, I am so glad I moved my family to a state that provides the appropriate help more than ever.

For the record….so glad I didn’t waste a vote on you in November.

 

Sincerely,

 

A warrior Mom

 

2 comments:

  1. Take that, Governor! Yes, you are a warrior Momma and Trenton and Andrew are so blessed to have you fighting and advocating for them on a daily basis!!! All I can say is AMEN to this letter!!!!

    Nana

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  2. Can you believe with autism being constantly in the news anymore and about how the rate of diagnosis is increasing, that he would choose, of ALL things, to cut funding on autism care. How disappointed I am in him. He clearly needs to live in your house for one day. Actually, in all reality, it would probably only take one hour. Excellent letter.

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