I remember talking to Tomkin Coleman from Pawsitivity Service Dogs (http://pawsitivityservicedogs.com) for the first time on the phone last September. He told me that Holden’s application for an assistance dog had been approved, and we were chatting about Holden’s challenges—and mine. In the midst of describing what other parents felt were the advantages of assistance dogs, he landed on an emotional point for me. “When the dog is out and about with his boy and wearing the service dog vest,” Tomkin explained, “it lets people know that things are not what they seem.”
I couldn’t hold back my rush of tears. Finally, someone acknowledged what I hadn’t put into words: that awkward pain of dealing with a public meltdown or tantrum. I recall one afternoon in the “lobby” of Hy-Vee, our grocery store in Brookings. Holden and I made it through the shopping and paying parts of the endeavor and he was sitting inside the cart basket (which, as I’ve explained in another blog post, isn’t our usual procedure). It was cold outside and I had only a few bags, so I needed to get him out of the cart or else we could be sitting in the cold parking lot for awhile (in the thick of a bad day, weather doesn’t register for Holden). He wouldn’t get out. He’d wedged himself into the cart, and his three-quarter length winter coat and snow boots only made the situation worse. For at least ten minutes (it felt like thirty, so it must have been ten), I tried to get him out. I used words. I used sign language. I used threats. I tried to bribe. I used every conceivable method. Each attempt to get Holden out was met with a scream and a “No!!!” or a variation of “Leave me alone” or “I don’t want to.” It was rush-hour at Hy-Vee and it felt like the entire town of Brookings was witnessing—and judging—our scene as they walked through the lobby. Finally, I sat down on a bench to calm down. I let a few tears slip out. When I looked up, my friend Natalie was walking toward me, which was a shock because she lives 50 miles away. She asked if she could help. I gave her the bags and then wrenched 60-pound-plus Holden out of the cart, trying to keep from getting kicked with a snow boot (which he’d done successfully twice before). He was crying—the “stubbornness” moving into exhaustion. The three of us made it out to the car just fine after that, Holden clinging to me in the cold.
For so long, I felt guilty about that pain of embarrassment. It felt selfish and immature—it was Holden going through the rough moment, not me. Why should I care what others think? But the truth was that I did care. I knew that others judged my ability to parent based on my son’s behavior. And sure, most of the time someone who watched long enough would know that “something wasn’t quite right.” But otherwise, there are no physical markers of Holden’s “special needs.”
Imagining different ways to deal with these public moments have been helpful. I have a “list” of different narratives to explain or frame Holden’s behavior for others—depending on the age of the onlooker. Once, in a shopping mall, a boy Holden’s age attempted to make friends with him during a meltdown. Holden reacted shyly. I told the boy “Holden’s brain works differently than other kids.” But apparently, so did his (according to his mother) which is why he recognized a kindred spirit in Holden. With adults, I usually say “He’s got a communication disorder” or “a rare form of epilepsy that affects language, memory, sleep, and behavior.” I want to write a list of snappy comebacks for folks who glare, but I’ve only gotten one so far:
My child as a severely, severely, severely abnormal brain; what’s your excuse for rude behavior?
Honestly, I fantasize about saying this but I haven’t yet. But I’m glad I have it rehearsed and practiced, ready to deploy. Because honestly, sometimes it takes a lot of energy to just decide to leave the house. A few weeks ago, I was talking to another mom with a son with LKS (they live in California). She, too, shared the difficulty deciding to leave the house or not. “We can’t be prisoners in our own homes,” I argued, but mostly to convince myself. “And it’s not fair to our kids, who need experiences in the outside world to be stimulated and grow.” Plus, I admitted, sometimes we just need milk and bread.