What Special Needs Parents Are Really Fighting For

cooper 7
The comment said…It’s always about the special needs kids. You parents are always whining for them to get everything.”
That comment was from a while back and it was in response to a post about how children with special needs/disabilities were forgotten during covid. A bold statement yes, but also true.

The forgotten children is the phrase that I use.

It was made be a lady. One the same age as me. One with kids. She felt that everything is just handed to kids in special education.
The statement has been in my head for a week now. Running through on a ticker as I find myself once again suiting up my armor to give my nonverbal boy a voice.
I have been doing this special needs parenting thing for 12 years and I cannot tell you one thing that has come easy in regards to special education. Not one.
There is a constant tension. A push-pull. Beauty. Worry. Hope. Fear. All tethered together.
Somedays it feels as if we were dropped into a building…one with posters of clubs and sports on the wall that we will never be a part of. And more than once I’ve felt like an imposter as I walk the halls wondering if anyone knows my son is even here.
It takes bravery to walk into the building for me. Will we ever belong I often wonder.

Let me tell you our truth. And maybe it’s just ours. I don’t know.

But parents like me, we’re not fighting for the Cadillac or to have the red carpet rolled out. We are fighting for basic rights for our kids. The ones that most parents take for granted. And I say that with certainty, because I know. I have three other children who do not need special education services.
Parents like me…we’re fighting for our children to go to school. An actual building that will welcome them in. To let them stay a full day.
We’re fighting for them to have a bus to ride. An aide to ride with them. A person to be with them throughout the day to keep them safe and help them go to the bathroom.
We’re fighting for them to eat in the cafeteria. To not be hidden away. For their general education peers to know their name. To see their face.
We’re fighting for them to be able to walk in the halls. To ring a bell at the holiday concert. To go on the field trip.
We are fighting for our kids to be in school. It’s as simple and as complicated as that. Because in our world, it’s not a given.

It’s fighting funding and rules and laws. And asking for more training.

It’s proving a person’s worth.
It’s a 24-page report.
Twelve people. That’s how many people are needed around a table to determine if and where and how and what in relation to education.
Think about that.
I’m not angry. I’m just tired. There is a difference.
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.
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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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