Welcome to disABILITIES.
It's always very shocking and depressing to get any kind of diagnosis. Right now, I know that everyone in your family is hurting, but things will get easier. During pregnancy and when the child is a baby, almost everyone has ideas/dreams of what their child will be like and things they will do with them (I know, I taught prenatal classes for 4 years). Unless they have some experience with it, most people don't dream of having a child with a disability. Right now, your cousin's family (and all their extended family) are dealing with the loss of that dream child. Right now, they are just able to see what they have lost. Take the time to grieve for the dream child now. Trust me, things do get better.
I have 3 pieces of advice, as someone who has been there:
- if you look only at what you don't have, you will make yourself nuts. Love the child for what she does have - maybe, an interest in people and a beautiful smile.
- whatever the syndrome/condition, there are always gradiations. The cases that are written about are usually the "worst case scenarios", but the scale goes from that worst case to the "best case". If you look only toward the worst case scenario, you will miss a lot.
- for every place in a book where it says "can't" or "won't" there are "can" and "will" too. 40 years ago, conventional wisdom said that children with Down syndrome could not be educated, so don't even try. There were some families who would not accept that and because of them, there are a lot of very functional people with Down syndrome out in the world right now. Not every child with a disability will be the "best case scenario", but they need a chance to be the best
they can be. The child has not read the books; they don't know what they can't do, so they may do it even though the books say it is not possible.
I don't recall anyone mentioning Angelman's on the disABILITIES Board before (but that doesn't mean there isn't anyone). In case no one responds with first hand info,
here's a link to the Angelman's Syndrome website. A girl who lived next door to us in another state had Angelman's and I know they felt the organization was helpful to them. Another good link is
Exceptional Parent Magazine.
I have to go to work now, but I thought I would get you started. There is a wonderful story about ending up in Holland when you expected to go somewhere else. Maybe someone else can post a link to it. (I know this sounds strange right now, but it will make perfect sense if you see the story).
