December 18, 2023
Parenting Autism and the Conversations We Must Have
A few nights ago, my husband and I found ourselves driving around a picturesque town for 20 minutes or so…alone.
We had no kids with us. There was no loud noise or fighting, endless questions, or voices from an iPad. It was just us, driving around looking at holiday lights, Christmas music playing softly.
Eventually we found ourselves in the parking lot of what looked like a brand new apartment complex located right on the river. It was breathtaking.
After looking at the sign, we saw it was for folks 55 plus.
Our conversation became about the ease of living in a place like that. No grass to mow. No sidewalks to shovel. We even spoke of walking outside and hopping on our boat for a weeknight dinner.
We sat for a while taking in the white lights framing the windows.
‘Cooper would love this,’ I said.
Without skipping a beat, my husband responded, he absolutely would. There is a Starbucks next door. (He loves the cake pops!)
And off we drove. Just like that.
We have three boys and a girl. They are 13, 10, 5 and 2.
Our hands are full. Our hearts are fuller.
We don’t know what the future holds by any means for any of them. We do know the middle one wants to be a professional hockey player and work part-time at Jimmy Johns (he’s all about that discount). The toddler, well, he is planning on being a superhero. Or Sonic or maybe a Teenage Mutant Ninja Turtle. The blue one. And the baby…she is the definition of sass and strength.
And Cooper, our 13-year-old, we just don’t know if he will ever be able to work or volunteer. We can’t say just yet. We hope and we push and we teach. That’s all we can do as we prepare him for adulthood. But what we do know is we want him with us as long as he possibly can be.
There is so much more that goes into that though. We are getting older. He is getting bigger. Stronger.
His happiness. Safety. Where he wants to live. Our retirement. Finances. His siblings involvement.
As parents to a little boy with a disability, the logistics are easier to talk about then the worry. The facts are easier than the emotion. The mind versus the heart.
Autism. Forever. After.
After we are gone.
It’s not a conversation that happens overnight between parents. We know that firsthand. It’s a painful, worrisome, an evolution of feelings.
What I do know is years ago, when I looked at my beautiful son, I couldn’t imagine a future without him talking or living independently. It was too hard to think about. It was for his dad too. We grieved it all. We weren’t ready to think about forever.
We are now.
And we welcome every bit of it with open arms and a realistic outlook. He is the number one factor in our future.
We don’t have all the answers and we are still scared a lot and that’s okay I think. There are no simple answers either I guess.
I do know, this kid will sure like living by the river. I can’t wait to see the joy on his face as he ages. He loves the wind and when the water splashes him in face. You want to see pure joy, take a look at this kid.
And we get that forever.
Start the conversation moms and dads. Talk about next year and 5 years from now and after 18 and 21.
Just start talking.
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.
