There, I said it. One of the scariest words for me.
I had a brief conversation with another mom the other day about it. She was well-meaning but said something like, “You know, parents without special needs kids have worries, too.”
I don’t know why exactly (and I’m not proud of this), but a little flame of annoyance ignited inside me. I felt my eye start to twitch and my jaw clench that she could compare our worries. I said, “Of course you do. I worry for my daughter, too but at least I don’t have to look into adult group homes for her for when I die.”
Oh yeah, I went there.
I immediately felt bad for saying it because who am I to tell someone my worries are more important than theirs? There was a long pause and then she said, “Oh wow, I never thought about that. That must be so hard.” I apologized for sounding stand-offish and she acknowledged me and said she was glad for the perspective. So we’re all good.
Is this what they call adulting?
Anyway, it’s a worry for those with neurotypical children as well, but the reality is that at least you can take solace in the fact that most of those ones will mature and have the ability to become independent. They will be able to survive on their own at some point.
My son and so many others like him will not.
That sounds harsh, I know, because it is.
Despite all of the hard work and effort he and we have made to help him and will continue to, it will never be enough for him to live alone.
And that is exactly the constant heaviness that lives in our special needs parent hearts.
Alex has the diagnoses of severe autism and intellectual disability. For the rest of his life, he will need support. And at some point, we will be too old and frail to be there for him.
To add to this, the pandemic is also affecting us and the future. He is missing out on a lot of school outings that are not just for fun but that are for life skills. Taking public transit, acceptable behavior in public, practicing language in stores, shopping and handling money. He is missing out on practicums and work experience. He’s missing out on socialization with his big buddies at school and so much more.
I’ve been thinking and wondering a lot lately about where we’re going to be when this is all over. Next year he will be finishing high school and then what? A day program? Some kind of part-time ‘employment’ with supervision?
It is incredibly hard to think about, nevermind actually plan these things, especially right now when a lot of services are canceled and everything is over.
So while we are starting to have some conversations and slowly talk about future planning, it’s really overwhelming and emotional, and right now I feel like all I can do is live one day at a time.