I recently joined an online support group for parents of teens and adults with developmental disabilities. There are so many things I need to know to get ready for Alex’s entry into adulthood. There are issues such as becoming his guardian once he turns 18, finding him a job or activity once he ages out of school, and figuring out where he will live once his father and I get to that place where we can’t care of Alex anymore. that very thought terrifies me.
One of the first threads I read involved parents trying to find more suitable living arrangements for their adult children. These parents are older and their children present behavioral challenges and cannot live alone. Being that Illinois is living in the dark ages as far as care of adults with disabilities, funding is hard to come by and parents are struggling with trying to do the right things for their children. When parents can’t afford private care facilities, the MUST rely on government. The average wait time to get into a state funded facility across our country is about a decade and in Illinois, that wait is closer to 15 years long.
One mom was struggling with her son’s living arrangements. He is very unhappy in his group home and it is creating more behavioral problems than usual. He constantly talks about how he wants to go home. He has this phrase…”I want to go back to the yellow house”. That is where his parents live.
I read that entry and I pictured Alex in that situation and I just broke down. I am still crying. I know this mom is trying to do what is right for her son. There is no doubt that she is trying to prepare him for the years ahead, when she and her husband are gone. Yet, something in me just screams that if it were me…I would go get my son and I would bring him home. She must be a very strong woman to not do that. As emotional as I am, I know that bringing him home to her could do him more harm than good. It could set back his progress. Terrible things could happen should something happen and he be alone in the house. I really can’t say how much I hate the idea of me leaving Alex. I would sell my soul to be able to take care of him for the rest of his life. He is such a joy and so loving and gentle and fun. Yes, he has his days but don’t we all? The idea of leaving him throws me into a world of panic and anxiety and depression. I hate the idea of him living somewhere that isn’t a real home for him. I hate the idea of people caring for him because they are paid to rather than because they love him. I hate the idea that he may one day think I abandoned him or don’t want him. I have spent the majority of my own life feeling like I don’t belong and being lonely. I never wanted that for my children.
When I hear parents say they wouldn’t want a cure for their child’s Autism, I get so conflicted. I love my son just the way he is and I wouldn’t trade him for 3 “normal” kids. He has brought me endless joy and has taught me more than I could ever teach him. At the same time, I do not love his future. I do not love the limits some random and mysterious disorder places on him. It isn’t supposed to be like this. No parent should have to struggle with these concepts. No parent should have to figure out how to provide for their adult children or how to make sure they are well cared for and protected after their own death. It is times like these that make me say…I hate Autism. I know many parents and higher functioning autists would condemn me for such a statement and they are free to do so. I know how I feel, I know why, and I know how much I adore my son.