Celebrating the tiny triumphs in life with Rett syndrome

At the International Rett Syndrome Foundation’s conference earlier this month in Minnesota, there was a “Caregiver Retreat Center,” a quiet room away from the main conference activities where parents and other caregivers could go to chill. The conference sessions were information-heavy and sometimes emotional, and this side room offered a chance to recalibrate.

One of the stress-free activities you could do there was fill out a “Tiny Triumph Certificate,” awarding yourself or someone else props for some small achievement. Someone patted herself on the back “for driving 7+ hours next to shipping semis to get here.” Another certificate read, “Had her shoes on most of the conference,” though it was unclear to me whether the “her” referred to a child with Rett syndrome or her mother.

I awarded a certificate to myself for figuring out how to take public transit from the Minneapolis-St. Paul airport to the conference center 26 miles away, at a cost of $2, rather than buying a $70 Uber ride. Little did I know that even as I was filling out that certificate, back home in New Jersey, my daughter Abby, who is 29 and has Rett syndrome, was racking up a certificate-worthy tiny triumph of her own. She was salting her mother, Donna.

Not assaulting her. Salting her.

Perhaps I should explain.

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Donna had stayed home with Abby while I made the four-day trip to the conference. When I got home, I couldn’t help but notice that there was salt all over the carpet around Donna’s favorite recliner, where she spends much of the day because of a bad back.

“Oh, Abby salted me,” Donna explained casually when I pointed it out, “and the vacuum cleaner’s upstairs; I can’t lift it because my back’s killing me.”

Further inquiries revealed that Donna had fallen asleep in the recliner and Abby had wanted her awake. So first Abby had carried a small but heavy Bluetooth speaker over to the recliner and dropped it in Donna’s lap. When that had no effect, she went into the kitchen, came back with a salt shaker and, well, salted Donna.

This might not be a praiseworthy activity in most households, but it was a triumph for Abby because the hand use required to drop a speaker on Donna and then salt her is pretty impressive for a kid who has never had much purposeful hand use thanks to Rett syndrome. We credit the diligent work of Abby’s physical therapist, who in her one-hour-a-week sessions has been getting Abby to do things we’d thought were beyond her, like bend over and pick up something off the floor.

But it wasn’t just the dexterity involved in the salting that impressed us; it was the possible meaning behind it. That Bluetooth speaker usually sits on an end table, where we also put Abby’s bowl or plate when feeding her; perhaps in Abby’s mind it was a surrogate bowl or plate. And the salt is salt. So it seems to us that Abby, who is nonverbal, was trying to say, “Wake up and feed me, for God’s sake.”

Anyway, such are triumphs when you live in Rettland, as the woman who was encouraging people to fill out those Tiny Triumph Certificates knows well. Her name is Colleen English, and she organized the Caregiver Retreat Center. It’s remarkable to me that she was at the conference, because her daughter with Rett syndrome, Claire, died in 2021. My sense is that a lot of parents who lose a child to Rett syndrome detach from the Rett universe fairly soon, but not Colleen. By email after the conference, I asked her what keeps her coming back.

“When Claire was alive, I couldn’t be fully honest or really feel how drained I was,” she said. “But once she was gone I couldn’t hide from it. I talked to other bereaved moms who reported similarly. So I wondered, how do we normalize and incorporate even the smallest things to support the caregivers?”

“The load on Rett parents, as you know, is monumental,” she added, “but that doesn’t mean we can’t try and do some small things to support ourselves. So that is the mission I am on. To help caregivers take small steps that I know can have a big impact, from my own lived experience. There is no other group that I care about more than the Rett community and it feels like the privilege of a lifetime to be able to come back and really be able to say I get it and let me help.”

Colleen and her husband, Jared, have a podcast about their experiences that’s worth a listen.

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