The Fears We Share as Parents of Kids with Disabilities
What keeps you up at night?
That was the question asked during a presentation I was giving to the amazing folks who work with children and adults like my son.
I fumbled a bit through my answer because I don’t like to speak of those things. I said keeping my son safe from the dangers of the world. As he gets older, bigger and bolder, I find it more worrisome.
And who will care for him after I’m gone. Or if something happened to me and my husband now. I don’t have answers. Not ones that I feel confident with at least.
And those conversations…they are hard to have. They aren’t black and white either.
A man came up to me after. I’m going to guess he was in his seventies.
He spoke of his daughter.
She’s 49. She lives independently. She uses her bike to get around.
She was diagnosed many years prior. Before autism was a household word. Back then he said it was mental retardation.
He looked angry when he said the word. Like it felt felt uncomfortable on his lips.
‘I never agreed with that diagnosis’ he said. ‘But back then…it was different. They told us a lot of things about her. That she would never do. And she proved so many wrong.’
And he went onto speak of his daughter with pride. His voice getting loud and joyful when he told us about her life.
And then he said…
‘Your biggest fear? The one that keeps you up at night?
It doesn’t go away. My daughter will be 50 next year and I still don’t have an answer. Who will love her like her mom and I do? Who will keep her safe? We just don’t know.’
After he walked away I felt so many emotions.
Thankful this man works with kids like my son.
Thankful he approached me and shared his story.
Thankful that there are other parents out there like me.
Start a conversation friends. We have to start talking about our kids and disabilities and the future. And I know it’s scary. I’m scared too.
But start talking.
This is Cooper. He is 14 years old and loves trains and school. He is smart and loving and he is autistic. For him that means a lot of things. He needs his hand held in parking lots and he can’t cross the street alone. And he can’t tell me if someone hurts him. I don’t know what the future holds, but I have to prepare. And I’m scared sometimes.
We have to figure out the answers to these hard questions. We must.
