Richard Engel Reveals Coronavirus Lockdown Has Been a 'Nightmare' for Son with Rett Syndrome
"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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