Hi Amy,
I am Sheenas mother,Valeri. Sheena is 23 now. I wish I had fought for
her more with her teachers.
They always told me she had learning problems. That was not the case.
She still cannot use her hands to well. They don't bend at all,unless
she forces them closed and then they lock up. She has to pull them
out with her other hand. She can't open bottles or jar lids. Thank
God they have made an electric jar opener. Her fingers bend backwards
without problems, all the way to her wrist. She has pain even when
she types to much.I tried to get her on disablity, but we were turned
down 4 times even after we went to court. No one understands what we
go through. They Sheena has a mutated form classical type. We had the
skin plug and all the blood test.Only 20% are diagnosed.The testing
has got a long way to go. I will not give up hope.
If I had to do it all again I would have started tring to get answers
before I let them lable her as LD or ADD. Maybe if I had Known at an
earlier age (she was 13 finaly got a Dr to take notice)I could have
helped the teachers to teach her.
My advice about the physical thing is find her a swimming pool and
keep that a big part of her life. The only time in Sheenas life that
she was really healthy was when she was swimming. Sheena has alot of
problems.Brusing,splitting skin,rolling tendens that cut off her air
sometimes, muscle and headaches,SO much I go no for hours.It is
almost as hard on me as it is her. I worry about everything she
does..still and she is grown.I am too protective of her.
If I can answer anymore questions feel free to E-mail me.
valgbm@.... I'll do the best I can to Help.
Do you get the news letter? Lots of info there. It is called Loose
connections.