The one question I wish my nonverbal child could answer
Rett syndrome has left Abby without words to convey what's distressing her
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So much of human interaction is based on asking a question and getting a response. “How are you today?” “Did you have fun on your vacation?” “How’s the job going?”
I’m still asking my daughter Abby questions every day, though she hasn’t answered one in the 29 years she’s been on Earth. “What do you want for breakfast?” “Are you excited about the new Harry Potter series?” “What shall we get Mom for her birthday?”
Abby has Rett syndrome, which, among other things, robbed her of speech before she had mastered more than a word or two. She has not shown much interest in her eye-gaze computer or other communication devices, so it’s unclear what she’s thinking, wishing, or wondering most of the time.
If she suddenly developed the ability to answer questions, there’s an endless list of them I’d love to ask her. Mundane ones: “What do you want to wear today?” Opinion-seeking ones: “What color do you think we should paint the family room?” Thought-provoking ones: “Do you miss your grandma?”
But if I could pick only one, something I could ask her whenever necessary and receive a definitive answer, it would consist of two words: “What’s wrong?”
Abby goes through stretches when she is clearly unhappy, but she can’t reliably tell us what the problem is, leaving us guessing whether it’s a headache, cramps, hunger, frustration, or what. For some years now, she’s been conveying her displeasure by hitting her mother or me, or grabbing our hair (maybe that’s why I have so little left?) with a death grip.
In Rett Facebook groups, other parents have reported the same thing, although the experiences vary. For some, like us, the hitting and hair-yanking came along only as the child got older; for others, it was a problem when the kid was young but eventually disappeared.
Lately, Abby has been manifesting her discomfort in another way: by crying. This is shocking to us when it happens, because until the recent episodes, we hadn’t heard crying in years, maybe decades. It’s just not something Abby does. Yet suddenly she’s doing it, a deep, sobbing cry that begs to be comforted.
“What’s wrong?” we say when the tears come. No answer.
I’ll take being hit or having my hair pulled over crying any day. All of those are reminders of one of the most difficult things about caring for someone with Rett syndrome — the inability to diagnose distress and relieve it — but Abby’s sobbing really underscores the anguish of the situation, both hers and ours. A simple question succinctly answered would do so much for all three of us, but for now and the foreseeable future, that question just hangs in the air: “What’s wrong?”
Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
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