Kari blogged today about her fortune to be surrounded by people who understand her family and their children with FAS (Fetal Alcohol Syndrome). I was struck by the overwhelming aloneness I feel about living this life with Dustin.
One of the main reasons I started blogging was Robert nagged me. I really didn't think I had anything to say that people would want to read (and still not so sure I do), but the reason I continued was Kari. She found me one day and left me a message that we are not alone in this struggle with FAS. Through that post I found many other blogs of families like mine. IT held my attention. It furthered discussion of our own issues. It helps in a way nothing else has. It is my best therapy.
All that being said, we are wickedly alone. We have no Personal Care Attendants like they do in Minnesota and other states. We have no other families around us that we can talk with, fret with and help to support. We have no babysitter for Dustin other than my mother. No one else can deal with him. While Kari so fortunately "has people", we do not.
I say all this not to have a bunch of comments of sympathy. I say this to say that even though I feel alone becasue of FAS, I am certain others feel alone with children of differing disabilities. Reach out to someone. Email them. Comment on their blog. Give a mother an understanding look when she is fighting her kids in the grocery store. Let them know you understand, laugh with them.
Most importantly, look at them differently. It is so easy to assume the parents are at fault for a child who is behaving badly. . . give them the benefit of the doubt. Maybe they are on their last shred of patience. Maybe they want to chuck it all. Maybe they go home and cry because they are alone in their child's disability.
I know I do sometimes. . .
February in AZ
2 days ago