Like a lot of people who write about special needs parenting, I get asked for advice by new parents. Honestly, I’m a little surprised by this, since much of my writing, including the better part of my book, goes into great detail of exactly how poorly prepared I was, and probably remain, to take on the task of successfully raising a daughter with a disability. I like to think I make for a good cautionary tale, but I feel woefully inadequate to the advice-giving gig.
When I think about it, however, I do feel qualified to give one piece of advice. It’s the one I’ve had to make myself follow time and time again, and yet it’s also the one I’ve always been the least comfortable with. With apologies to delicate sensibilities, I share it with you now:
Forgive yourself when you fuck up.
Here’s the thing. You will. You’ll make mistakes, and some of them will be big ones. Some of them you’ll know right away, but most will only reveal themselves to you months or even years later. Many of your biggest blunders will involve the path you chose to take at some junction or another. You chose to move to this school district, or that town. You listened to this doctor, or you didn’t take the advice of that therapist. You ignored some tell-tale sign from your child of impending trauma, or you obsessed over things that turned out to mean very little.
You’ll make those choices, and they’ll ultimately turn out to be the wrong ones, and then? Trust me, the regret you’ll feel will break you if you allow it to.
Don’t allow it to break you.
Remember that as much as you might want to believe otherwise, you can’t fix everything. After a few years of being a special needs parent, you’ll actually learn that you can’t even fix most things. I think maybe this is more acute with fathers, in the most general terms. Many of us grew up in households where our own dads were The Fixers. They mostly did that with success, maybe stumbling from time to time when their daughters wanted to date someone less than ideal. (I met a few dads who appeared to be sizing me up for burial in the back yard a few times.)
But when it comes to our kids with disabilities, fixing isn’t possible. For many, the very idea of needing to be fixed is outright offensive. Even for those like my daughter whose disability can be traced to a very specific physiological fault without which they might be restored to something like a typical life, that idea of fixing is one that leads nowhere productive. And yet, it might be the hardest fantasy to give up, and the hardest irrational guilt to let go of.
As parents, we’re probably almost certainly unprepared for the disabilities of our children, at least at first. We go into battle against monsters without so much as a BB gun in our hands. What we discover as we go is that sometimes, we don’t need weapons. We simply need different tools, such as patience, and tougher skins, and ingenuity. And most of all, we need to learn forgiveness, primarily for ourselves.
I make mistakes. I make a lot of them. I’m blinded by my own preconceptions and tied down by my pride and my arrogance. I operate much of the time with my heart in the driver’s seat rather than my brain, and I talk much more easily than I listen. If I were granted the opportunity to go back and do it all over again, well, I guess I’d take that chance in an instant. Of course I would.
But the thing that drives me the most, and the thing that will drive YOU the most, is love for my kid. My love for Schuyler is the engine that drives me, cruising down paths of success and plowing messily through swamps of failure, and as imprecise and blundering as that engine might be, its heart is true. If you are similarly driven with your own children, then I truly believe your child will do more than survive. Your child will thrive, because for all the choices you make, the best gift you can give to your kid is the strength that comes from that love. That love and that strength is like kindling. You might just be astonished at the fire that will ignite inside your child.
The rest? You’ll figure it out.
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