The Things Special Needs Parents Should be Talking About

There is a part of this special needs parenting thing that I’ve been thinking a lot about lately.

I never thought about it when he was younger.

Honestly, it never occurred to me as a thing to think about. I was so focused too. Focused on helping him in the moment. So this never occurred to me.

But now that he’s almost 9, and we can breathe, and he’s at peace, it’s starting to creep in. This thing. This new worry.

It’s seeping in around the edges of my acceptance. When I am alone. In the shower. Or late at night.

Even on a Sunday afternoon while the baby sleeps, the middle one is at a play date, and I’m decorating for Christmas.

See, our plan is to keep him with us. Forever. And by forever, I mean as long as we can. Through our middle years. His teens and twenties. Into our retirement. His thirties and forties.

After that I don’t know. Not yet. There is too much unknown. Too many variables.

We want him to always be with us. That’s our hope.

Anyhow, the thing I’ve been thinking about.

My son is always here. Always home. He’s either at therapy or with us. There are no outings without us. No play dates. No birthday parties. No carpooling by another parent to practice.

By age 9, most kids have social lives. Friends. Teammates. But not my boy.

See, I know this because of his brother. He is six. He is in sports and activities. A minimum of three times a week he is at some sort of practice or game. Then there are play dates. Our house or a friends.

And then there are birthday parties. Those are never ending. And I can’t forget biking, running in sprinklers, building snowman and all around being up to no good in the neighborhood. You know. Kid stuff.

Almost every night I’m yelling from the front porch to come in for dinner and after that I yell in the backyard again for a bath and bedtime.

But my Cooper. Never once has he been out of my sight when he’s not in therapy.

He’s always with me. He follows me from room to room. I talk to him. Sometimes he responds. But mostly not. He will dance around me. Twirling.

The air constantly filled with the sounds of train whistles and the shows we’ve been listening to for nearly seven years now. Barney. Elmo. Dora. His friends. His people.

I know the phrases. So much Jamie and I say them to each other.

Anyhow, I wonder now. I wonder what the future looks like. Will he ever have someone to take him for a drive or to a movie or to a park. Or will he always be home with us. Every second of every day.

These are the things parents like me wonder.

Will he have friends? Will we find a nice person, maybe another parent, that will take him for an outing? Will we hire people?

I don’t have any answers yet. I just know it’s a new worry. Because he’s growing up.

These are the things we should be talking about. Because forever can feel really scary sometimes.

And by talking about it, sharing or worries and our stories, we can help each other.

Interested in writing for Finding Cooper’s Voice? LEARN MORE

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, subscribe for exclusive videos, and subscribe to our newsletter.