To my Son’s School District

I registered my son for school today. I drove five minutes from my house on this cold winter morning and walked into the office with all of our forms: his birth certificate, our utility bills, his physical.

This school is a large part of our community. It’s the only school in town, and it’s a one school district.

It’s where I always envisioned my son starting school. But today, when I walked into that office, I knew I wouldn’t be coming back and that my son will probably never even walk into this building.

Instead, he will get bussed to a school that is half an hour away from our home, in a small classroom with just a few other students who live in homes across our county and another.

In some ways, it doesn’t really feel like it’s 2019.

In some ways, it feels very much like there’s no inclusion and that we’re not welcomed at our local school.

I feel like my son is being shipped off to somewhere that seems very foreign and so far away from everything we’ve known. He’s going to a school in a town we have never even taken him to.

Don’t get me wrong; I’m not in denial.

I know my son needs a more specialized learning environment; I know he will never get to the point where he “catches up” to his peers.

I know he could end up getting lost in the shuffle if he was placed in a typical preschool classroom. He has fragile x syndrome and that will cause developmental gaps between him and his peers to widen more and more as he ages.

I understand that he will not be able to work on writing his name or learning the alphabet until he is much older than most preschoolers. We’re still working on trying to hold a crayon and scribble, how to communicate verbally or through a pecs system, and how to sit and focus on a task.

I also know that in many ways my son’s disability could interfere with other children’s learning.

I know that his flapping could be distracting, his grunting could be disruptive, and his meltdowns could make other children upset. But does that have to mean he can’t be included in his hometown’s school?

I know, I know, there are a million different things that go into making a school work, making sure all students are in an environment where they can learn and be successful. But, it doesn’t hurt any less that for my son that means he has to travel thirty minutes every day to and from a school we know nothing about and have no connection to.

All across our country, kids with disabilities are bussed to neighboring towns and communities to school’s that have a program in place to help our kiddos.

I understand that schools are struggling financially.

I understand that for each public school to put a program in place that then may end up only accommodating a few students causes a lot of financial burden to schools that are already struggling to receive funding.

But, in a world where people who have been marginalized are starting to speak out more and more and say that something needs to change, it seems fitting that we as special needs parents should start speaking louder about inclusion.

I know my son will be in a program that is housed in a typical elementary school, and I’m praying they truly promote inclusion, but that still doesn’t take the sting away from the fact that he is excluded from his hometown’s local school.

You can say, “oh well, what’s the big deal?” but think for a minute if it was your child who didn’t get to go to school with their neighbors, some children with special needs don’t get to go to the same school as their siblings, and this makes families feel very excluded.

So, to my son’s school district, I want you to ask yourselves what it would feel like to have your child sent off to a school outside their community as early as age three and what you would do to fight to change that?

I hope my fellow special needs parents and I can convince you that it’s time to start thinking of how inclusive inclusion really is.

Written by, Carol Burke 

My name is Carol, and I am a mom to two beautiful boys with fragile x syndrome. I am hoping to express some of the overwhelming emotions of this special needs journey we’re on through my writing. I also want to raise awareness about fragile x in order to help make the world more accepting of kids like mine. You can follow our families journey at Discovering Fragile X.

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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.