Posted on 11/06/2023 6:13:03 PM PST by Nextrush
Those who are truly cutting edge researchers are few and far between and vastly overwhelmed by the need.
The fortunate ones can connect with them. The rest, just have to live with it and suffer.
Good for Italy. Britain is being run by demoniac people. I have a very old friend whose daughter has Rett syndrome. I’ve known the daughter since she was a small baby, she is now about (counting) 45 years old. Her parents love her dearly, and despite the daughter’s extreme disabilties, loves them dearly. They take care of her at home, and now they are getting old, their grown son moved in and is helping.
Its a hard thing for the entire family. A lot of high functioning Downs children can go out get jobs and and function pretty much on their own in a sheltered environment and with a little life coaching. Depending on her level of ability, A young lady with Rett syndrome may not need 24 hour care, but will probably require 24 hour monitoring and supports.
Because they are getting older they need to start looking at a social worker for their child and look at support options in the county they live in. (Which hopefully provides support for the developmentally disabled!) The older their daughter gets the harder the transition will be. There are often waiting lists and questions about funding which involve years of lead time. Better to start sooner than waiting. (And they might already involved in this process.)
They have gotten some help from some kind of social services, and have at least one friend who helps and they are able to pay her, and she also is a loving caretaker and much younger.
I’m sure they’ve given the future thought and planning.
Most parents have. I suppose I did not really need to ask.
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