What about me?

I knew the post on depression and anxiety would strike a chord with readers.

A week ago, while we were in Chicago, I had a bit of an epiphany. Not only was I filled with angst about my son’s future, grief that he won’t follow the conventional path, and anger at the injustice of it all, but I was also worried about me.

Yes, I want my son to have a good and rich life. But I want to have a life too.

I know that’s not something we parents acknowledge often. It seems awfully selfish. Guilt prevents us from talking about it. But when a child won’t be independent as an adult, it’s hard not to picture your life subsumed by their care.

“My son is turning 30 next week and I’m having a difficult time with it,” DeeAnn said in a comment. “While other parents my age are becoming empty nesters, I am still dealing with a ‘child’ who is completely dependent on me.”

Much of my day and head space is still spent caring and advocating for Ben. There’s a school lunch to be made, help with dressing and medicine and leg stretches in the morning. After work, I sit with him to do Kumon or send an e-mail or read Harry Potter or get him to answer questions with one of his Proloquo pages – which I design by downloading photos and creating the grids.

There are numerous e-mails and calls related to school advocacy (more on that in an upcoming post) and funding. I have hired Plan Toronto to help me develop Ben’s support network.

And now we’re exploring a voice device for him. I know from the ones we’ve abandoned in the past the tremendous amount of time that goes into setting something up. Of course it would all be worth it if there was an intuitive system that was easy to use, but I haven’t seen one like that yet.

There is lifting him in and out of the bath, or carrying him up the stairs on my back (even though I’m not supposed to, and he can walk now). Washing his hair.

I still have to close the bathroom door for him because he forgets, and remind him to wash his hands and his face, and clean his eyeglasses and give him his hearing aids to put in. I still have to change said hearing aids' batteries.

He can’t go outside on his own or travel the TTC, or use the phone. He can't be left on his own.

He goes to camp for a month this Sunday, and while I know I need the break, I know I will miss him terribly. And worry about him and whether the worker with him can multi-task the myriad of things that need to be managed to get him through the day.

But till age 21, he will have school during the day which gives us a structured break. After 21, I feel that I have to magically whip up seven meaningful days a week – with things like volunteer work, recreation, continous learning and maybe even some kind of job (or business – that’s what many parents do, create a full-fledged business that their child can work in or own).

I’m trying to rein myself in and just focus on the next year, while doing some long-term planning (such as the support network).

But in Chicago, I couldn’t help feeling that when my child is an adult, I want some kind of natural separation, some space for myself.

I think it’s one thing to create an adult life for your child with disabilities. But it’s quite another to do that AND have your own interests, activities and private time. To follow your own dreams.

The pic above is of me on a Bixi bike in downtown Toronto. A couple of months ago D'Arcy and I had a worker stay over for the night and we went to a hotel. We spent the afternoon riding along Queen St. W. on these bikes and I felt like a carefree teenager (well, if you know me, I've never been quite 'carefree!')

I'd love to hear from parents who have struck a good balance between caring for themselves and caring for an adult child with disabilities. Louise