The day my daughter with Rett syndrome became invisible
A school-age child with Rett syndrome has a rich world. Then, a void.
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My daughter Abby, who has Rett syndrome, won’t sit through a lot of movies, but one she has watched a zillion times is “Harry Potter and the Sorcerer’s Stone,” the first Harry Potter film, which came out in 2001, when Abby was 4. My wife and I think she has latched onto that movie and the next three in the series because her older sister was a rabid Potter fan.
At 4, Abby had already been through the regression phase of Rett syndrome, where speech and hand use disappear and cognitive function becomes impaired. But we think that she was still capable of internalizing the experience of watching those movies with her sister, and that watching them now triggers pleasant memories for her.
In any case, midway through “Sorcerer’s Stone,” Harry receives an anonymous gift, an “invisibility cloak.” Wrap yourself in it and you become invisible. Harry puts the cloak to good use later in the saga.
It turns out that, eight years ago this week, Abby was destined to receive an invisibility cloak of her own. And unlike Harry’s, hers wasn’t a good thing to get. Abby’s invisibility cloak wasn’t a physical garment. It was Graduation Day. The moment she graduated out of the public school system at age 21, Abby became, to a large extent, invisible.
Abby spent her entire school career in our area’s special-needs schools for kids with disabilities, finishing up at a high school with a few hundred students in it. We’ve sometimes wondered if we should have pushed to have her mainstreamed instead, but there’s no doubt in our minds that at the special-needs schools she attended, she was loved and, in the current vernacular, she was seen. She’d walk through the front door and be greeted by name by dozens of teachers and by those of her schoolmates who could speak. She had friends and activities and a big, vibrant community when she was within school walls.
And then she graduated into a vast void that we were unprepared for, though we’d read plenty about the realities of life after graduation for kids like Abby. Suddenly, Abby went from having a very full, stimulating day to having nothing unless my wife and I provided it.
We looked at various day programs for adults with disabilities, but they were mostly geared to clients who could speak and who did not need assistance with eating, toileting, and other basics. Also, it was dismaying to see how much those programs relied on arts and crafts to fill their clients’ days. Painting and gluing and such are fine unless, like Abby, you have poor hand use. Then they’re just exercises in frustration.
So Abby has spent many, many days in the last eight years at home, with what little stimulation I or my wife or the television can provide. Sure, she has some regular activities — a line-dancing class for special-needs adults that a friend of ours started; Miracle League baseball when it’s in season — but the patchwork we’ve been able to come up with is not even close to the level of stimulation she had while in school. And now, even the one-day-a-week day program we finally found that fit her is likely to close because of the upheavals at the federal level that are roiling the whole world of special-needs adults.
So Abby, who once had many connections to other human beings, now has very few. She’s invisible to most of the world. I wonder, too, about all the schoolmates who graduated with her. What happened to them? Once in a long while we’ll run into one at a local mall or some such, but for the most part they’re now as invisible to Abby as she is to them.
If we were more energetic and better organized, I suppose we could have orchestrated some kind of regular get-together for Abby and her old school chums, or done something else to maintain the level of activity and interaction she enjoyed in those blissful school years. But, unlike Harry Potter, we’re not wizards, and we have yet to find a spell that will get that invisibility cloak off her shoulders.
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Del Vecchio Milena
Il mantello dell' invisibilità si può e si deve combattere costruendo reti alternative quali progetti di vita personalizzati integrati sul territorio mai tralasciando la sfera cognitiva e di apprendimento. Se i genitori della ragazza possono leggermi, contattatemi per favore. Grazie.
Kathy Bree
That’s sad to know that girls like ours aren’t catered for after school.
I live in Australia and Sarah has attended many day programs over the years.
They focus on abilities for each person.
Sarah goes bowling, with a ramp to guide her hand and knock the ball.
They have picnics and walks and go shopping.
It is funded by our federal government so each state has the same rules.
I think that small towns probably have less supports because of staff and infrastructure.