One of the best pieces of advice I give to parents new to the world of being a “special needs parent” is a question I was asked the first time I attended the Dads Talk group at the Arc Baltimore:
What do you do for fun, for yourself?
It’s not so easy, when we’re in this boat. We feel a need to keep track of our kids, and our days are filled with trips to therapy, with dealing with our children’s foibles. And while we might say that we do things “for ourselves”, that often includes running to the gym at a weird hour, early morning walks, or the occasional date night when you get respite or find a sitter who can deal with your kiddo.
But that’s not really what I’m talking about. Because while I love going out with my wife – to the theater, to the movies, or other things around – it’s not necessarily “for me”. And that’s where, as parents, we fail ourselves.
A lot of parents in our situation don’t make space for that in their lives.
It’s necessary, to step away now and again, to be something other than parent/spouse/employee/et cetera. It’s more than recharging ourselves, but it’s also it helps to keep our own dreams alive. How many of us had hopes and aspirations before kids, before a diagnosis, before coming up with the millions of excuses as to why we couldn’t do what we wanted?
Now, for those of you who’ve been following my blog for a while – or know me in real life – you know that I disappeared a lot this year for my curling. (I was very fortunate that my wife let me disappear for four bonspiels this year – two at my home club, one in Boston, and one in Québec, which had me away from home for really about 3 weeks total.) My curling is my outlet, honestly – it lets me step away from being a parent and a husband for a few hours, away from the thoughts of work, and into something where I’m able to concentrate on only a few things at once… and then when it’s done, I can step out of it and go back to real life. It doesn’t hurt that it’s also my one true athletic outlet as well, and probably borders on ‘obsession’ for me at this point.
On the other hand, my wife’s more of a thespian. She was in a production of Rapunzel last year, and she auditioned last night for another local production, which is something that she enjoys very much. (When we were first together, she was doing an operetta each summer with a local theater troupe.) It’s harder when rehearsals conflict with so much else that’s going on, but I’ve tried to make sure that she understands that I’ll cover the kids at the times she needs it… and at other times, as much as it might pain her to pay for it, that’s what babysitters are hired for. It might not be Broadway, but it’s an attainable piece of a dream and an enjoyable endeavor.
The key thing is this: Parents, find something to fulfill yourself as if you didn’t have a special-needs child. Live a life that’s worth living, and make time to chase those things that bring you joy. You owe it to yourselves.