I Wish I Could Sleep
How can I sleep when my Asperger's sons future is so unsettled?
Yet another night when my head was firmly planted on the softest, coolest part of my pillow, my eyes clamped shut but sleep would simply not come. I cannot turn off my mind, my anxieties, my concerns. As any mother, I worry about ALL three of my children, not just my eldest who has a diagnosis of Asperger Syndrome. They are all equally important and loved by myself and my husband. However, I know that I can count on many opportunities for the younger children. They will be able to soar and be free for the first time in their lives when they leave our house. They will still have a special needs sibling but they will get a break that lasts longer than a few hours or days from his daily needs. This is one of my goals for them.
My oldest, well, not so sure. As a parent of a child on the autistic spectrum, I am used to being sleep deprived. Parents of ASD kids lose many if not every night of sleep to the night spins among with other bedtime issues their kids face. Now, my son sleeps well, it me who doesn't. Maybe I have forgotten how, but more likely I believe it is because as he gets older, raising him get more complicated.
I recently spent time with a parent of a 5 year old profoundly autistic child who is not speaking as of today. She is very concerned that he cannot communicate and that if in a troubled situation he cannot call for help. She is looking into expensive and drastic means to help him. I have known this family for the past 9 years. This mother has gotten more haggard and tired looking each and every time I see her. She, too has more children besides the autistic child. She has her hands full and we understand each other. But she believes I am better off since my son has speech (always has) and can go to "regular school" (always has). In many ways I agree with her, but truly no disability is "easy". There are different degrees, but it is difficult anyway you slice it.
Unlike his non verbal counterparts, my son has no place to call "home" Programs for him are limited and often non existent. He is cut out at times because he functions too highly in the academic sense. But he does not function as a typical 16 year old boy in an
emotional sense. He is way below. He is trusting, immature and obstinate. There are days you simply cannot reason with him. He is now 6'4". I am tall, but he towers over me. His dad goes to work all day. I am the one home. I gave up my full time job to take care of him and his needs. Someone HAS to go to work.
I read once "an autistic child is one thing, an autistic adult is quite another thing." Never have any words proven truer. While with this family this past weekend, I noted that noone was staring at their adorable little boy. He blended right in although, he was in his own little world. He was pleasant and cute, so no one cared if he was a bit different. My son is a man. He thumps around, sometimes lets his pants ride too low, revealing the "plumber's crack", he smells like a man, he has body hair. He has acne. He is handsome, but not adorable like the 5 year old. People will notice if he starts walking back and forth chatting to himself and he sometimes does. They will not be open to his behavior. What saves us here is that this is New York City and many people do not even stop to listen or look when there is anything odd going on. But if they did, we would run into serious problems. He could even be arrested since he is not mature enough to give proper answers to police when stopped. It is scary.
What will happen to him? In the current system, he will live at home with us until we die, collecting SSI once we are able to pay for a lawyer and secure it for him. Then he will become his brother and his sister's responsibility, which is not fair, but it's life. However, he is very high functioning. If the system would open up a bit and embrace our kids, their age group, not just the "early intervention crew", perhaps they might find a place where they can secure training and help to be contributors to our world, rather than those who put a drain on society. Basically by these standards, he would be better off if he was not intelligent academically, then there would be a place for him. That makes absolutely no sense.
He will get accepted into college. Whether he can get through it remains to be seen, I am hopeful, but worried at the same time. I wish that when he is handed his diploma in June, that the NYC department of education would finish what they started and allow him one final summer with the Transition program he partakes in during the summer. This way he would be ready for college rather than staying home for 8 weeks with no help and assistance on how to properly get ready for college when you are disabled. If my son were failing, he could maintain his services until age 21, and then move right into the many programs available for disabled adults. But what about the academically successful disabled person who is handed a High School diploma at age 17? Where does he go? He still needs emotional support. It isn't a matter of getting "bored" over the summer with our kids, it is about continuity and consistency. Isn't being success academically the reason the education system wants to place special education kids in regular education programs? Have they thought about after graduation? Of course not.
My son is not alone. Many parents are sitting up at night worrying, writing letters that never get the proper answers. We are lost. We need to find the end of the rainbow for our kids. They CAN work, they can go to school, they CAN have a life. We need one door to open so we can sleep at night. We are exhausted and need to put our heads on the pillow and feel relief.