I am the mother of a 22 year son that has been diagnosed with Kanner’s Syndrome/Early Infantile Autism, Anxiety Disorder, Dysgraphia, and Inattentive and Impulsive ADHD. He is an amazing human being with a heart of gold and the trust of a three year old.
What will happen to my sweet prince when I am gone? Who will make sure that he gets his medication? Who will make sure that he goes to the doctor? Who will make sure that he brushes his teeth, showers, gets his hair cut, shaves, has his video games, has food to eat, and has clothes to wear? Who is going to pay for all of these things?
The Social Security Administration see him as a quirky adult that will somehow manage to survive in this cruel world. They don’t see an individual that has no concept of manipulation, treachery, lying, deceit, or so many other things that don’t exist in his mind.
He doesn’t lie. Therefore he believes that everyone is truthful. He doesn’t break rules. Therefore he believes that we obey laws. He doesn’t cheat. Therefore he believes that everyone is honest. He doesn’t understand sarcasm. Therefore he takes everyone at their word. There is no gray area for him. It is all black and white.
I face the same dilemma that so many other families face. What will happen to him when I am gone? Too many families go to bed every night with that weighing on their minds and wake up to the fact that they just don’t know. It is our reality. Most families happily watch their children graduate from high school. Many see their children go off to college. They rejoice that their child has found their first real job and that they are going to be able to take care of themselves. Many will see their child get married and have children of their own. I wonder if my child will survive after my death.
People speak of empty nest syndrome and how hard it is to be alone after their children leave home. My son will never leave home. I will never have an empty nest. Instead I must constantly worry about what nest he will have when I am no longer here.
No mother should ever have to worry about dying because she doesn’t know if her child could survive without her. No mother should suffer the pain of thoughts of what might happen to her child when she can no longer protect them. I have read a quote that says I pray that my special need child has a long life and that I live one day longer. For so many families that is their reality.