Answer from Suzy, another mother who shares her experience and insight:
Well, to my knowledge, every teen, whether disabled or not, sings the "It's
Not Fair" song, so I'm not sure I would put much effort into changing that.
Time is the only thing that works on that one, as far as I know. I hear it a
lot and have learned to turn a deaf ear to it. Ask my kids. They'll tell
you how mean I am!
I've found that changes are best tolerated if done slowly. We talk about it for days (or weeks depending how big the change is). We "practice" it before the real thing happens. We introduce just a part of the change into "real life" a little at a time.
Probably the biggest challenge you face is getting your daughter to accept her disability. Because of the brain damage, she won't be able to make certain connections from the left brain to the right brain. Learning a certain skill does not insure that the skill will be used appropriately. That is the nature of the disability. Kids with FAS are usually about half their chronologic age, that is, if she is 20, then she behaves more like an 8 to 10 year old. Research suggests that emotional development arrests at around the age of 16. Viewing her this way might help you in living with her. Listening to her with an ear to her "real age" might change the way you relate to her. Would you allow a 10 year old to go off unsupervised? No, of course you wouldn't. How detailed would your explanations be to a 10 year old? You sound like you have a pretty good understanding of this already, because you have gone to 24/7 supervision. You have stated that she will always need an outside brain to help her through life. And you are very correct in this assumption.
One thing that I am working on is building (or buying) a housing situation where the kids with FAS have separate living quarters. Here in the desert, we have a lot of places that have what they call "mother-in-law" cottages out back. I have heard others have set up the same kind of arrangement by turning the upstairs or basement into a small apartment so that they feel less hovered over. Is there something like this that can be arranged? I plan to and have heard others say they plan to charge a nominal rent and it helps their adult with FAS feel more independent.
My youngest daughter is my biological child, and is "normal" (?), while my older three kids are adopted and diagnosed with FAS. She was having lots of confrontations with her older sibs until one day, I explained to her that she needed to relate to them as if they were 9, 8, and 7, instead of 17, 16 and 14. As long as she keeps that in mind, their relationship goes pretty smoothly. It might be helpful to you too in making the daily living somewhat more calm. Is it possible to talk to your other children and explain it to them in this way?
I know it's very difficult to make time for other family members. You might try having your daughter go away from home for a couple of hours with some trusted friend or peer so that you can spend more time with your other children. She might like being away from you and feel more independent. Is there a trusted family member -- aunt, uncle, older cousin -- that could take her for a while, perhaps to the mall or a movie. In our town, there are beauty colleges that charge very little for a shampoo, set and manicure. I send my daughter with a close family friend and it makes her feel SO grownup and special. It takes about 2 1/2 to 3 hours, so it's a good amount of time.
Another thought is for your husband (do you have one?) to keep her at home while you take one of your other children out to something special, like dinner and a movie, or shopping at the mall or whatever they prefer. I have a friend that has a "date" night once a month with her children. She lets them pick out whatever they want to do and she goes out with them alone. It doesn't have to be even that often. I try to do it once a month and rotate the kid that goes -- so each kid only goes out once every 4 months. But it seems to be enough. It's just that they get the feeling that they are special. A little goes a long way. And I have very limited funds, so we usually do something pretty cheap. We go to the dollar movie, to all-you-can-eat buffets, if the weather is nice, one of my boys likes to go urban fishing with a packed picnic lunch, my youngest daughter likes to sit under a shade tree and read a great book out loud. I've found the actual event isn't as important as the planning, thinking about it and the time spent doing it. It goes a long way in relieving guilt and bringing us closer together.
Hope there is something in here that you can use. Never stop sharing your feelings online. That helps me an awfully lot. It's been a great stress reliever for me. And I have found that other people are so full of great ideas.
Hugs,