Here’s a complicated (and probably loaded) question: What’s the most challenging part of being a special needs parent?
First of all, let’s recognize an obvious fact. Every special needs family has unique challenges. We don’t necessarily share all that many experiences, although some (worries about what happens to our kids after we’re gone, IEP meetings, and an unhealthy relationship with Dr. Google) feel nearly universal. There’s one that I would offer up as another that many, perhaps most, of us experience. It’s the one that has been wearing on the Rummel-Hudsons as of late.
To be a special needs parent can mean feeling isolated. Standing apart. Alone.
In my memoir, I wrote about the guilty fantasy of winning the lottery and moving to an island somewhere, away from the anxieties of a world that didn’t quite understand Schuyler.
“In my new, shameful Big Money Dream, I would take my $200 million payoff, say goodbye to all my friends and family, post one last blog entry, and then take Julie and Schuyler and move us all far, far away, to that mythical and deserted South Pacific island that has served as the subject of so many fantasies and New Yorker cartoons. It would be more beautiful than Hawaii and more remote than Pitcairn.
“I would build a little hut on our island, with a thatched roof and perpetually open windows overlooking a crystalline lagoon. That nameless, uncharted island would be our paradise home forever, and we’d spend the rest of our days with Schuyler, a perfect civilization of three. My little girl would know nothing about monsterless kids or where she fell on a sad chart in a geneticist’s office, and she’d never have to ponder the holes that a mean-spirited God had punched in her brain.”
I guess the thing that I hadn’t quite grasped at the time was that as Schuyler grew older and her issues became both more complicated and more adult, our sense of isolation would grow. As Schuyler’s friendships and relationships in school have become less clear and more difficult to navigate, so have our connections with the world. Be careful what you ask for. This isn’t the island I had in mind.
The other night, Julie and I had one of those late night “State of the Union” conversations, sitting in the dark but unable to sleep. There were lots of things weighing on us both, like Schuyler’s future independence, her difficult transition to a high school that might not make for a very good fit for her, the ongoing complexity of her AAC development, and now a sense that inclusion has been an epic failure.
And everything else. I think we’ll all be better off if I don’t type out the whole “Late Night Bugbears” list.
The thing that seems to diminish us both, the jagged piece that seems to have poked the largest hole in our boat, is simply that feeling that we’re doing it alone.
We know that’s not true; Schuyler’s beloved godparents are six hours away, for example, and they’ve been amazing. They’re always there for us; I remember them jumping in their car and driving for six hours so they could surprise Schuyler (and me) at her first band concert a few years ago. If Julie and I die in a car crash or get eaten by bears or whatever, Schuyler will probably get an upgrade where parents are concerned. We also have a few friends at work and closer to home as well who really get Schuyler and whom we could count on in an emergency. And we both have distant friends and family who try to understand, as much as they can without being close and having the opportunity to get to know Schuyler and her wonderful weirdness and her complicated needs.
But our support systems are thin, and they are incomplete. And as I talk to more and more parents, online and at conferences, the thing I’ve learned, which is an only slightly cold comfort, is that this might be the thing that we share in common with the greatest number of special needs parents. Families like ours might have resources, or not. Our kids might be entirely medically fragile, or they might be healthy but wildly different. Our kids might have lots of siblings, or they might be only children, which can be an especially isolating factor for kids with disabilities. Our situations are all so incredibly diverse, but I suspect those late night conversations in the dark take place in most of those homes.
We’re already on islands, many of us, but not in a vacation wonderland kind of a way. Our islands aren’t floating in a remote blue tropical sea. They exist in plain sight, in the middle of your towns and workplaces and schools. Most of our territories are invisible; you can barely see the fences unless you look closely. And most people don’t look that closely.
I honestly can’t imagine how special needs families did this before the internet. The kind of isolation they must have felt is daunting, and I know that many of them were consumed by that separation. Those of us who occupy this world of disability are painfully aware that God really does give a lot of families more than they can handle, but at least we have the internet. We can make connections with others in our situation. We get dispatches from other islands, perhaps, and even if the only thing that really means is a little line of text on a screen that says “That really sucks, I’m sorry,” sometimes that’s enough.
Special needs parents live on lonely islands. Fortunately, our online connections inform us from time to time that at least our islands are part of an archipelago. That’s something.
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