Saturday after another rain storm. Watching the kids try to pick their way through the mud is at times funny and at times not so much. As usually baby J is trying to find a mud puddle to reside in. He very much loves mud. He has often said that it “calls” to him. I know that he loves to get as much mud on himself as possible. I am imagining that it helps him with some of his sensory issues also. He deals every day with not only being born with Fetal Alcohol Syndrome (FAS) but also with sensory issues and Ehlers-Danlos Syndrome. He deals with constant pain in his joints and frequent dislocations. His biggest issue is that with the FAS he does not learn to protect himself the way most Ehlers-Danlos patients do. I worry so much that he will someday really harm himself. Due to having FAS he has no fear of anything or anyone. He will do anything that other children tell him to do no matter how dangerous. As he has grown it has become more problematic to keep him safe. While we still call him our baby he is now on his way to being a young child and soon a young man.
As parents when dealing with children or adults who do not fit in with the norm we struggle. With baby J society will make some concessions. First he is very small for his age. He is diagnosed with dwarism. He also is mentally handicapped. He has a g-tube for feeding and he has epilepsy. So the world “sees” his differences. The world recognizes him as special. They are more patient with him and as he ages the world and our society will still notice that he is not a “normal” developing person. So yes I worry about him but I know that there are services and helps for him. What about our children who look and at times even act like others. What concessions will the world make for them?
Here is the problem. The answer is NONE. We then have to deal with the whole issue of how to protect that population. Recently our oldest son has been in the news as he is struggling with his life choices. V has been charged with many serious criminal charges. He has been sentenced to prison for many years and then he was let out to be on work release. Due to the very unstructured environment he ended up walking away and then was too afraid to turn himself in. He was gone for almost a month. It was an awful time for us as a family and also for V. He is now awaiting a new trial for the new charges he has coming due to this mistake. V is a person who is now being seen as a normally functioning adult at 19. The issue with this is he is a person who has FAS, is mentally handicapped, only operates from the ages 0f 6 to 12 developmentally and has severe impulse issues.
So he is being judged as a neurotypical person and yet he is not. If he looked more like someone who was disabled and not like an angry young man perhaps then society would make more allowances for him. While I know he has committed a crime and cannot just be given a free pass it is hard as his mother to think of him in prison. Prison will not fix anything for him. It will not teach him anything. He struggles with the ability to understand cause and effect so this punitive method of teaching will not work. Then comes in the issue of where else is there for someone like V to go. That is the real road bump. There isn’t anywhere that will provide the structure he needs and where he will willing go. He is high functioning enough that he does not want to be in a center for people as severe as say baby J. He feels he is above that and wants others to see him as normal. In his quest for normalcy he will rather go to prison than have others talk about him as being “different”.
We have to change our system and provide positive placements for people like V. Places where he can feel as though he is contributing (and really is as he is so capable of this if given the right supervision) and where he can learn to have a trade. If we could provide this then perhaps we could empty out our prisons and have more people out and contributing in our society.