Hi, I'm new here. I have desperately been trying to find help for my 23 yr old daughter for 15 years. I didn't know how mysterious this disorder seems to be for the professional/medical community.
My daughter is in turmoil, her life in chaos because of this problem. I have read lots of things to try to help. We just don't know what to do.
I should have taken her to a child neurologist, but at the time I thought it was a mental problem, and was taking her to psychologists.
I even had one to tell me that this was a 'made up' condition and it's not real.
I know I'll have to explain my whole situation, and believe me, it's a lot. But I need to know which section of the forum to post on, and if anyone here knows anything about this problem.
I have been so desperate for years. She is having problems in every area of her life and it's causing turmoil for her.
Now, she has an 18 month old son.

sisymay,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Thanks so much! I guess right now I should talk about the current situation instead of from the beginning, since she needs help with 'now'.
She is in a mental health program run by the state. It was confusing at first about how this program works. I *thought* this was the right program for her. But, I didn't realize that what she really needed was the program they have under 'developmental disabilities'. The problems she has are neurological, not mental. So this would qualify as 'developmental'.
Over the years I did not get evaluations done that would lead to a diagnosis of 'developmentally disabled'.. I didn't know to do this. I kept going to psychologists and had 'psychological' evals done. We had 2 done. Neither one showed her true problems.
The reason I am saying all this is leading up to this - the program won't help her with their developmental disability part of the program because she doesn't have this listed as a diagnosis before age 23. And she is 23.
I'm not sure exactly what problems they are helping her with. She has been in it for about a year now. All they do is 'peer group'. No individual counseling and no help for her specific problems.
As anyone here with knowledge of executive function problems can tell you - instead of everyone seeing that you have these problems, they see that you are lazy, no good, don't care, etc.
I have got to get with these people to see exactly what 'diagnosis' THEY say she has. Because they aren't doing anything.
But this isn't the serious problem. About 5 months ago she qualified for their 'housing' program. They pay for her to live in an apartment. They pay for everything. BUT, she has to go to this peer group 3 half days a week, soon to be 5 days a week. Over time they are seeing how she is. And, they have just moved to a new apartment building.
Think of how her executive problems are in this situation. She has boxes everywhere, can't get her brain in gear to know where stuff goes, nevermind actually doing it. She has a baby she's trying to take care of. She is very disorganized, loses things, etc.
Now, the person over the 'program' is really hard on her. They are doing all they can to get her thrown out, because they have no 'legal' reason to come right out and do it. They are doing very bad things that is making her really scared and upset. A man there sexually attacked her in her house, baby there. The man and the director of the program said she was lying.
The thing is.. she has no where else to live.
I have tried to get her help since she was 8. And over the years of not having help, not being able to cope with the problems, etc. has made her very difficult to live with. She has jumped from family to family maybe 8 times since she was 15. No one can handle her. It breaks my heart so much.
I try to help her all I can. My husband says he's scared I'm going to have a heart attack or something.
Tomorrow we're having a meeting with this so called director about the things they are doing to her. And filing formal complaints.
Then, another meeting to get straightened out 'why' she's there, 'what' they are doing to help her, 'why' aren't they helping her, etc.

I know this is so long, but only a very short part of the situation. She does have Medicaid, is there ANY other help out there besides what is given by the state? I have found that virtually no one in the medical community even understands this problem. Does anyone know why that is?
Thanks for any help you can give.

I'm not sure if I can bump this, but would appreciate any help. Thank you.

I don't know if you have explored for information at our sister site -
http://psychcentral.com/
http://forums.psychcentral.com/


It has many more forum topics focused on what may be helpful for you & your daughter.