I think honestly the hardest thing in dealing with a disability (okay I hate that word), a differentability, is the fact that the world just really doesn’t want to look at the parts that are working right versus the part that might not. I can see this now across a spectrum of differences. My children all have some sort of difference from what is seen as the “norm”. All of my children are dealing with Fetal Alcohol Spectrum Disorder (FASD). Many of them have some other medical condition or mental health condition co-occurring. I feel like as they grow they all end up having to prove their worth to others. The issue is I watch them start to question their own worth. When I first started advocating for families I used to just cringe when someone called who wanted help for their child who was now 18. I felt so helpless as I didn’t have any really good advice to offer them for where to go to help. If they happened to fall into the developmentally disabled category sure I had things to offer but for the record most people with FASD are NOT developmentally disabled. So it is actually the rare occasion where this occurs.
The other fact though about being an adult with FASD is that the world doesn’t give any sort of concession to the processing speed or interpretation of the material out there. So a lot of adults who are more than capable are being run over by the world. They only need a little extra but we never stop to offer that. Their kindness and want to help becomes a doorway for con artists and users of all kinds. So they work and have something and others take from them. Then they have nowhere to go. Or they are too ashamed to admit that they got conned or used. It isn’t that people with FASD cannot function on their own it is that we are unwilling to find ways to make that be successful. It is just too easy at this time to put them in jails or treatment facilities when they “mess up”. We don’t look at ways to make sure it is different and so the cycle goes on.
I know that there are ways to fix this. The issue is getting anyone to believe in and see the worth of someone with FASD. There are successful programs in Minnesota, Canada and other countries. Just not here. Some day. I look into the faces of my kids who are growing fast and know that the day needs to be soon. So who will believe in it enough to really step up and help it happen? So often the families who are fighting for their kids are out of steam and out of resources. We need to keep looking as there is hope and I know someday there will be help. I also know that I can’t give up. I will not watch my children be locked up over their differentabilities.