Richard Engel Reveals Coronavirus Lockdown Has Been a 'Nightmare' for Son with Rett Syndrome
Richard Engel opens up in a candid essay for Today about how he and his wife Mary are "noticing a deterioration in Henry's overall condition"
The NBC News chief foreign correspondent opens up in a candid essay for Today about how his 4½-year-old son Henry Thomas — who has Rett syndrome, a rare genetic neurological disorder that leads to severe physical and cognitive impairments and, as of now, has no cure — "is not doing very well" considering the circumstances.
"Henry has severe special needs, and COVID has been an absolute nightmare for him and millions of other children like him. I'd add more colorful adjectives, but you get the point," writes Engel, 46. "Henry, who turns 5 in September, doesn't walk or talk. He can't feed himself efficiently. He doesn't sit up straight. Now that he's getting bigger, he can barely move independently."
The father of two admits he and his wife Mary "were coping better before COVID," revealing that "school was the only place where [Henry] could interact with other children," which was a huge asset for him.
"The kids would come up and kiss him, tussle his hair and bring him toys," Engel explains. "He didn't always respond as they expected, but the excitement in his eyes told them he enjoyed and appreciated it. Special needs kids have the most expressive eyes."
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"That's all gone," Engel adds of Henry's pre-COVID day-to-day routines. "He's bored. He's whiny. There is nothing more frustrating than hearing him upset and not being able to figure out what's wrong and how to soothe him. The TV helps, but you can only put on cartoons for so many hours a day. He's averaging around one."
Henry's baby brother Theodore "Theo" Forrest, 1 this month, has been interacting with his big brother, too, but Engel and Mary "are noticing a deterioration in Henry's overall condition" since the pandemic began.
"His tremors, whole-body shakes, are getting more pronounced. I don't know if that’s because of the stress or just a progression of his condition," Engel says. "His hand-mouthing is much more frequent. He has an uncontrollable urge to put his hands in his mouth all the way to his knuckle."
"We have braces for his arms that prevent him from doing it, but when they're on he can't do much with his hands at all, so there are trade-offs," he adds. "We sometimes put socks over his hands so he doesn't chew them to the point where they bleed. For a child who interacts with the world through touch, this contactless society we're living in has made his world smaller and less interesting."
To help their older son, who "interacts with the world through sight, sound and touch," Engel and Mary "cuddle," "massage," "bathe," "talk to" and "praise" Henry, as well as "shower him with kisses."
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"We burn scented candles. I do spa baths, combing his wet hair and giving him a head massage with conditioner," he writes. "Mary sings to him, sometimes a song she made up about Coco, and works with flash cards to teach him letters, numbers and colors all day long."
And while "it all helps," Henry is "still bored, and his condition seems to be getting worse" — but luckily, the family is able to continue the little boy's therapies at home, with a $100-an-hour private therapist.
"There are risks with having the therapist come, touching and moving Henry, but not doing the therapy has risks too. So we roll the dice, hoping not to hit seven and COVID out," Engel says, acknowledging that they are "lucky" in the sense that "other families can't afford to turn their homes into therapy gyms, and not all community support is strong."
Engel also spoke to other parents who have children with special needs about how they are coping, recognizing that "Henry's situation is not unique. Other families, doctors and advocates for children with disabilities say the disruption caused by COVID is reverberating throughout the entire special-needs community."
"Having a special-needs child was difficult before COVID. Now it's dangerous for the children and for the mental health of the parents," he says. "Without therapies, these kids are breaking. When policymakers and public officials prioritize what to open, where and when, I hope they keep special-needs children in mind."
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