Who Tells Your Story

I'm coming off a twelve-month period with my young adults with special needs that saw both the triumph of a college graduation and the trauma of job loss and mental-health crisis. I’d like to tell those of you with young kids that there’s a finish line and if you just stay the course you’ll eventually be able to break a tape and drink some water and celebrate your scores, but I haven’t found it yet. I’m still running, and I’m BEAT.

One thing that’s been providing some much-needed diversion for me lately is the musical Hamilton. I’ve never seen it live, and I probably won’t until it gets to, like, the high-school-drama-club circuit. But I listen to the cast album constantly, and I follow Lin-Manuel Miranda on Twitter, who is adorable, and I watch all the #Ham4Ham videos, and I experience it all as vicariously as I can. One of the themes of the show, and something Miranda has mentioned in interviews and in a commencement speech recently, is the way a story changes depending on who is telling it. There’s a song and a repeated line that “you have no control who lives, who dies, who tells your story.” There’s a number in the show that rewinds so you can see a scene from another character’s point of view. Aaron Burr, who narrates, knows that he ends up being seen as the villain in your history for shooting Hamilton, but in his own narrative he’s a guy who deserved better but was constantly being thwarted by an obnoxious upstart.

I think the idea of the story changing depending on whose narrative it becomes — and how we put ourselves in and out of the narrative — is one that has real resonance for those of us parenting kids with special needs. I know we all have stories in which educators and gatekeepers are the villains in our history, and I bet we’re pretty sure that when they’re the ones telling the story, we’re the bad guys. Worst school duel I ever had with educators was when all of us absolutely and passionately thought we had my kid’s best interests at heart. I survived, but I paid for it.

When we work with educators, we absolutely have to put ourselves in the narrative and fight for what we see as our kids’ potential and our kids’ needs and rights. But it never hurts to consider the view from the other side of the table. Maybe there really are black-hearted obstructionist incompetents out there, but most of the child study team members I’ve worked with have been, at worst, middle managers taking abuse from all sides and having to put in place mandated policies whether they like it or not. They keep all their plans close to their chests. They’re waiting to see which way the wind will blow. When it comes to perfect placements or behavior plans or competent inclusion, they're willing to wait for it in a way that we, as parents, cannot. We're non-stop, and every day we fight like we're running out of time.

I'd like to say that all our duels are with professionals who seem bent on keeping our kids from rising up — that all of us parents are scrappy revolutionaries who may not live to see our glory, but will gladly join the fight — but lately I've had a fair amount of rap battles in my head with other parents who have locked in to a belief or mind-set about their children's potential and needs and are not willing to admit that anybody else's experience can be different. Sometimes they're aggressive and sometimes they're like King George singing veiled threats like a love ballad, but either way, they're as much of a gatekeeper as any administrator. "Our kids can't do that" is a refrain I'd be pretty happy never to hear again.

In the long run, though, I think the hardest part of our special-needs parenting gig is not fighting with professionals or other parents — although those battles can be excruciating — but finding a way to turn our children's narrative over to them. There was a time when we could safely believe that, as much of a bummer as it might be for us, our kids would never be able to tell their own stories and would always have to have parents or siblings or a circle of support staff around to drive the plot. I'm not sure we have that questionable luxury anymore. Although inclusion may look as unlikely as a ragtag army in need of a shower defeating a global superpower, it is unwaveringly the way of the future, and our schools and communities are going to be plunging into it whether they know what they're doing or not. The protective environments that might have been available to our children in the past — self-contained classrooms, specialized schools, sheltered workshops, institutional living — are going to be fading away whether there's a workable alternative or not. The endings of our stories are being rewritten.

And are they really our stories after all? The issue of who tells your kid’s story is getting to be a more and more poignant one these days as self-advocates have raised their voices and insisted on their right to take over their narrative. They're tired of being told "Talk less, smile more," and their work is often hard for parents to read and accept. We are so very, very accustomed to being our children’s scribes and voices and narrators, it’s unthinkable that there could be a story we don’t know and tell. It’s hard sometimes to even imagine that our kids have an inner life or an inner voice. And it’s terrifying to think that the story we’ve been telling, sometimes by the seat of our pants, is the story they’ve adopted and become. So often I hear my son say something about himself that I realize is something I’ve said and he’s internalized and twisted a little, and the translation is not good.

If you need an illustration of how your child's version of the story may differ from yours, by the way, consider sensory processing issues. There are a lot of behaviors that look absolutely like deliberate misbehavior to a parent that to a child are survival measures. There are things that look like good parenting to a parent that to a kid look like deliberate torture. Adults have such freedom to compensate for their own sensory sensitivities — we just avoid that food or that itchy clothing or that cramped space and think nothing of it. Yet with kids, we feel like we have to force the issue and pick the battles and really, we don’t. Ask yourself why you’re telling your kid’s story the way you are. What would your child’s story be? Are you the villain in this history? It’s so easy to stop it.

Some of the issues we face as parents of kids with special needs are like that: identify a problem, strategize a solution, savor the victory. Others are more like the second act of Hamilton, in which we find that, indeed, "dying is easy, living is harder." People we thought were on our side have different opinions. Failure to take a break has disastrous consequences. We learn that we can't write or argue our way out of everything. Mistakes that we make damage people we love. We resort to endless blog-post think pieces straining for metaphors. But right at this point in time, at this intersection of inclusion and self-advocacy and the stories our kids are living, it feels like history has its eyes on us. What story do we want to tell?