Telling tales about my autistic son

“How does Peanut feel about you writing about him?”

It’s a question a number of people have asked me in the week since I published my open letter to the police officers who helped us during a recent meltdown. In that letter I shared a very personal moment in my life as the mother of an autistic 10-year-old?—?and thus, in the life of my son.

I write a lot about parenting, and particularly, about my research into how families navigate the digital world. But there’s a big difference between writing about parenting in general terms, or even sharing a few anecdotes about my own kids, and writing about the intense challenges of parenting an autistic child. My parenting journey regularly includes days that would probably count as other people’s Worst Parenting Day Ever, so telling the true story of this adventure means giving people an inside look at very private moments.

But the response to the story I shared last week made me realize why it’s important to tell that story. I’ve heard from people who say that they’ll now have a different view on the child who is melting down in public, and of the parent struggling desperately to contain that meltdown. I’ve heard from the parents of other special needs kids who experience similar struggles, and find it comforting to know they’re not alone. And I’ve heard from autistic adults, and the parents of autistic kids, who have given me useful feedback that’s going to affect my own parenting choices.

All those voices have mingled with the voice in my head that’s been telling me to share our experience of raising an utterly exceptional child. That voice has only grown louder as I’ve done more speaking about raising kids in a digital world, because I’ve seen how many families’ screen conflicts are intensified by their own kids’ special needs. It’s grown louder as friends with younger kids have started to encounter challenges similar to our own, and have asked me how we’ve survived the journey.

Most of all, it’s been amplified by my own continuing struggle: now that I realize I’m running a marathon, not a sprint, I know I can only make it to the finish line by letting my words light the way. I’m a writer who lives on the social web, and I think my way through things by writing and talking about them online.
For a long time, that didn’t seem like a good enough reason to write my son’s story, even if it was the only way I could write my own. But as a dear friend once pointed out: if writing about Peanut is what gives me the ability to do what I need to do for him, then it’s worth it.

That’s why I feel ready to try a new experiment: creating a new Medium publication. It’s a way of gathering together a few of the pieces I’ve written over the years, describing the experience of raising an exceptionally gifted, autistic boy. And it’s a way of committing myself to writing more of those stories going forward, so that our experience can reach and help other people who are struggling. Not just special needs parents, or even parents in general, but anyone whose life isn’t going according to plan, and who needs to figure out a way to live with whatever curve ball the universe has thrown their way.

“We can help other people?”

It was an idea that delighted Peanut himself when I told him about the online reaction to our police encounter. He’s got his share of obstacles, but he’s also a very lucky boy, as I pointed out: he’s white, he’s male, and he’s got privileged parents who know something about how to communicate online. We are in a position to put our challenges and experiences in service to other people?—?including those for whom similar challenges may be fatal.

The goal of service isn’t enough to magically erase the contradictions and complexities that come from publicly sharing the private struggles of the very child I need to help most. I’m going to be careful to run each story past my husband, who already acts as Peanut’s in-house privacy advocate, since neither Peanut nor his sister would or should read everything I write. There are some areas that will stay off-limits, like amusing bathroom stories or things he’s told me in confidence. Whatever I write, I want to be sure I’m writing from a place of love and respect for my son, and not in a moment of anger.

And of course, nothing that could identify our little guy by name or face. That’s why I’ll keep using his online handle, and why I’m naming this project accordingly: The Peanut Diaries.

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