Advocating for my Child Doesn’t Mean I am Trying to Cure Him

The small room is kept cold and quite. It only has one long rectangular table with 12 black cushioned chairs that have wheels at the bottom of them. The walls are painted light tan, with no pictures hanging from it, and the carpet is dark brown.

You can not hear the sound of my heels walking to one of the chairs where I will sit for the next hour.

It’s August and every room at the board of education is full and humming with excitement and nervousness for the upcoming school year a month away.

Although, the building is full, our small room is filled with a thick smog like cloud of tension. I sat directly across from the assistant superintendent and to the left is the lawyer representing the board of education.

I’m not alone. I have brought my own lawyer to represent our son Zachary who has Autism, our home BCBA, and my husband.

I can only describe the atmosphere as something out of the movie 300. The Spartans versus the Persians; Zachary versus the board of education. How can this four year old, non verbal, autistic child match up against the board of education?

I don’t know, but here we are ready.

 

After our first full year of preschool, and with much heartfelt deliberation my husband and I decided this school wasn’t the right fit for our son. I truly prayed and wished that it was different. That this was the right school, right teacher, right environment.

Why wouldn’t we want the first thing to present itself to us be the thing that helps our son the most?

Here we are presenting the case that our son needs more than they could give. The school doesn’t have enough staff for my son or enough time in the day for my son to get all that he really needs in order to reach for the stars.

We have brought lots of facts and data. Everyone in the room is writing vigorously.

The board of education’s lawyer looks up, makes eye contact with our lawyer, and matter of factly says, “Even if Zachary changes schools it doesn’t mean you are going to cure his autism.”

I have to let that replay over and over again.

“Even if Zachary changes schools it doesn’t mean you are going to cure his Autism.”

Let it sink in.

Advocating for the education that my son deserves is translating to someone else as me trying to cure him.

The more meetings and appointments I go to for my son, the more I find that people just see and address autism, and not my four year old, loving, wildly smart, child as a whole.

Autism is such a small piece of Zachary and our family.

Yes, sometimes autism is in our face all day, but it’s like looking into a kaleidoscope. It’s bright, different colors, and shapes, but also sometimes hard to see the whole picture and continually changing with each move of your hands.

It’s painful sometimes that your mind will replay scenarios like this over and over again.

The things that you think of after the fact. What I wish I was brave enough to say in the moment.

Dear lawyer, could this have been your first case dealing with autism and special needs parents? I find it hard to believe that to be the case if that were true…Do you think our life is truly awful because we use the word autism in our house? Or that we would need or want to cure it?

Your perception of autism is blazingly clear to me.

My child’s need for more means to you that I should just sit back and hope for the best with what I’m given. It must be easy to sit at that side of the table.

You don’t go home to autism, and that’s the key difference to you and I. I know and see the endless potential and possibilities that are at the fingertips of Zachary.

Advocating for my non verbal child’s quality of life doesn’t mean I’m trying to cure him of anything. I’m trying, like any other parent, to help him reach the stars. Every child deserves that.

Help me, help my child.

Written by, Melissa Owsiany

I’m a nurse, wife and mom to two wonderful boys Zachary, who has autism, and Landon.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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