Lessons from war on raising a special needs son: To help him, we must also help ourselves

I never thought I’d be having this conversation with my wife. We’d recently learned that our beautiful, smiling two-year-old son Henry has a serious and lifelong genetic disorder. Henry has a variant of RETT Syndrome, a cruel condition that prevents his brain from controlling his body and mind. Doctors have told us that unless a transformative treatment is found, Henry’s physical and cognitive abilities will be severely limited. It’s not just that he likely won’t walk or talk and may be confined to a wheelchair, but doctors say he won’t understand what a wheelchair is, let alone how to operate it.

I asked a specialist who has treated both girls and boys with RETT (it’s far more common in girls) if Henry would eventually be able to do things like go to the bathroom by himself.

“That’s a very complicated act when you think about what’s involved,” he told Mary and me. “He’d first have to understand that he needs to go to the bathroom in advance. He’d need to know what a bathroom is and where it is. He’d have to be able to get there, to undress himself, to go, to clean himself and to dress again, and he’d have to know the order in which to do all these things.”


Source : nbcnews