A good friend took her son for his first diagnostic evaluation this week. I called her in the afternoon and said, “How’d it go?”
“Oh, you know,” she said. “Fine. Other than having to spend the day telling a total stranger about all the ways my kid is broken.”
My friend had prepared for her son’s appointment by making a detailed list of everything her son is struggling with. She also compiled a history of his quirky behaviors, going back years. “Remember when he was obsessed with fans?” she asked me. I remember; that was about the time she and I met, and her son would come to my house and beg to turn on all the ceiling fans.
During that phase, my friend said, she would take her son to the hardware store to look at the fans, just for something to do. He would bring the fan catalog home with him and spend hours pouring over it.
“I still have one of those dog eared catalogs,” she told me, “ from five years ago. And I took it with me to the appointment to show the doctor. Isn’t that crazy?”
No. Not at all.
* * * * *
When you have a baby, other mothers talk, in a misty kind of way, about how your heart is living outside your body now, in this wee tiny person you’ve created. To this day I roll my eyes a little every time someone says that, because I am cynical like that and because, from the very beginning, there was nothing romantic or misty about my parenting experience. It was just hard — the NICU, the breast pump, the reflux, the speech delay… Parenting Henry always felt like running uphill in the snow. Barefoot. Both ways.
My friend Sue — who has two quirky kids of her own — also scoffs at the conventional Hallmark card take on motherhood. “You don’t wear your heart on your sleeve when you’re parenting kids like this,” she says. “You strap it to the undercarriage of your car and drive 90 miles an hour down the most potholed section of old Route 66. Every. Single. Day.”
And I stopped rolling my eyes because YES. That.
* * * * *
I messaged Henry’s karate coach this week, to tell her that, after two and a half years, Henry is quitting karate. He hasn’t been to a class in over a month; he falls apart every time we so much as mention it. There was a perfect storm of things that led to this: the gym has changed the procedures for belt testing (change is bad!), Henry fell behind with his classes and wasn’t keeping up with his friends (being different is bad!), he’s 13 and looking for ways to rebel (parents are bad!). We tried a variety of things — rewards, consequences, praising, insisting, yelling, explaining — but nothing worked. Our therapist finally said, “You’re just going to have to let it go.”
I’m having a hard time letting it go. A very, very hard time.
Karate has been the best thing for Henry, better than any therapy or medication we’ve tried. The combination of discipline and physical activity helps him focus; the fact that his coach is a woman about my age reinforces respectful behavior. And the kids he has made friends with — some of whom are also a little quirky — are funny and kind and delightful to be around. The gym was one of Henry’s favorite places, for a long time, and it was the one place where, as my husband says, we saw him truly joyful.
A few weeks ago, he came home from school and said, “I really want to go to karate today.” He had a snack and got changed and announced, again, that he was ready to go to class. I called my neighbor to ask if she would keep an eye on Charlie while I was gone and we celebrated a little because yay! Karate class! Fist bump!
And then Henry had a panic attack and we didn’t leave the house.
I called my neighbor back, and it was all I could do not to start crying on the phone. I wanted this so much for him — not this one class, but this whole experience. I had started to think that maybe we were going to get back on track and start working toward that place where every choice wasn’t driven by Henry’s anxiety and inflexibility — and then we hit one of those potholes and my heart was crushed.
* * * * *
I don’t know how men — fathers — experience parenting a quirky kid. I talk a lot with other moms of kids like Henry, but for various reasons, I almost never talk with fathers. I know that my husband is deeply invested in both of our boys, that he notices things about them that I don’t necessarily see (and vice versa). I know that he has worked hard to readjust his expectations of how Henry’s life will unfold in order to accommodate his quirks.
I know the anxiety and the panic stress him out.
In my group of friends, though, it is the mothers who feel like our hearts are being dragged across the asphalt, on a daily basis. We are the ones who lay awake at night strategizing and diagnosing and worrying. We are the ones who save fan catalogs for years, because they are a sign of who our child is and how he is different.
We’re the ones careening down Route 66 with our hearts on the outside.
How do you manage the emotional toll of parenting a child with special needs?