The f-word for parents of kids with special needs

Today, I got an email that I couldn't stop thinking about. It was from a mom on an e-loop I'm part of; she's been lobbying on behalf of special needs families for years, and she invited us to attend a meeting happening next week. It's about policy plans for our state's Division of Developmental Disabilities. There will be a lot of talk about the Community Services Waiting List, which is what you have to be on in order to be eligible for housing for the disabled, as well as other support services.

The "f" word in my life is Max's future; it's not something I talk about a lot. On purpose. Looking that far ahead unsettles me. It's what I had to learn to stop doing when Max was a baby, because the more I kept trying to envision what his future might be like, the more anxious and depressed I'd get. And so for years, I've set my sights on the present of Max and what he is doing, rather than what he might do someday. It's been a good thing for both of us. A healthy thing.

I don't have my head buried in the sand. We are in the early stages of setting up a special needs trust for Max. But the thought of Max in a home for the disabled? It makes me cry. I am tearing up as I type this, and I've had to stop a couple of times. My mind goes to bad places when I think of it.

Max in need of a special home?

Max without me and Dave?

How could we do that to him?

Who would protect him and take care of him like we do?

No, he could never go to a home.

But what if it were the right thing for him? He'll need to be independent.

Would he be able to change his clothes himself or would there be someone to help him?

Would he be able to feed himself?

What kind of friends would he have?

What do those homes look like on the inside, anyway?

What kind of job would he get?

How could I not kiss him every day?

Would it be weird for me to visit every day?

And so on and so on. My mind spirals off into all sorts of irrational thoughts. And I know they are mostly irrational, given the fact that Max is eight years old and still has lots of growing to do and progress to achieve.

There is a home for adults with disabilities near a coffee shop we used to go to before it closed. A group of residents would come in sometimes, a mix of adults with mental disabilities and Down syndrome. I'd spy on them the entire time from behind my cup of coffee, watching them talk, laugh and enjoy themselves, as friends do. Sometimes I'd marvel at their camaraderie and feel glad for them. Sometimes I'd tear up as Dave would say "Awww, honey, don't" because I kept picturing Max as one of them.

The truth is, I'm not yet at the special-parent developmental stage where I can think of this. It's still too painful. And yet, what's helped me help Max over the years is researching things that could benefit him. I know I should attend the meeting. From what I've heard, the waiting list for housing is very long, he'll probably need to get on it sooner rather than later, and it would be good to at least learn about it.

I asked Dave if he thought we should go. "Yes," he said, without hesitation. "Let's educate ourselves." He doesn't get emotional about stuff like this.

So I am dreading it, but I'll put on my big girl panties and go.


Photo/Carl Wycoff