What happened to our dreams?
changing plans when your child is disabled
The birth of our first child was cause for major celebration. My husband's family had not had a male birth in 27 years. We were young, in love, happy and ready to embrace this little person. It was an ideal pregnancy until the very end when I went into pre term labor. I gave birth prematurely to our son. We had to leave him in the neonatal for two weeks, visiting him several times a day, dealing with the ups and downs that parents of preemies deal with.
When we took him home, we were nervous, but felt as though the worst was behind us. We watched him grow into a beautiful little person filled with curiousity. From the very beginning we knew he was very intelligent. He said his first intelligible word at age 7 months. He spoke full sentences very quickly. At age 13 months, he took his magnetic letters and spelled out the word B-A-B-Y. He read the word aloud and looked at for approval. I was totally shocked. I know now that he had been watching Sesame Street and an Asperger trait is the photographic memory. He has always been able to transfer what he learned visually to his life.
He quickly moved on to reading books, and learning all about trains. We continued to think we had a superior brain on our hands and encouraged his obsession with trains, taking him to train shows, stores and museums. Now we know that is also a sign of Aspergers Syndrome. They have a fixation with items and trains are among the top ten things Aspies take a liking to.
He went to school and I gave birth to my second child who was very different from him. We now were faced with the fact that there was something truly special about our child. The problem was, it was not special good when it came to school, it was special-bad.
I do not believe we have stopped mourning for the child we thought we had. He had been through many years of therapy and come a long way. However, the older he gets, the more apparent his disability becomes. His younger brother has passed him in maturity. He has a gait due to his muscle tone problems. He often makes faces that a normal 14 year old would not make because he is "thinking something funny in his head". He is unique and will find his place in the world. But it is scary to us, his parents who want nothing more than to protect him from everything, To make his world perfect.
Many people have told me to be grateful that he does not have something terminal. But he doesn't have anything that can be cured either, so where does that leave us? True, we have a child who is alive and relatively healthy, but he faces all sorts of challenges and discriminations that he should not have to face. His siblings must handle having a brother that people something point and laugh at. They will be better people for it, but at their age, it is difficult to see it that way.
Then there is his father and I. It is tough on us. The diagnosis was very hard on our relationship in the beginning. We both handled it in different ways. It nearly broke us up. We did the right thing and went to counseling and worked things out. We love each other very much and are partners through the good times and the bad, but each day is a challenge. People judge us, they don't live here, they should not presume to understand, but they think they do. It isn't fair, but it is the harsh reality that is life.
We have modified our dreams for our son. We have started to face the reality that he may have to reside in some sort of assisted living situation one day. But maybe not. We have hope even though we are realists. He is intelligent and we are always trying to find the right match for him, a place for him.
Our dreams? They are severely modified. My husband wanted to be a college basketball coach. He still does, but he knows that traveling around is difficult for us. we have to stay in a place where there are appropriate schools and services for our son. We have a hard time financially because I have had to quit my full time job in order to be available to my son, his needs and the needs of the other children. Their lifes have challenges too, they often feel they take a back seat to their brother and sometimes they do. We don't go places that other people go because it is either too taxing financially or too hard for our oldest to deal with. We are either a fragmented family or we stay home.
Our dream is now security. Financial and emotional security for us and our children. A future and hope for our son. Hope that society will grow and understand him and others like him. Embrace him and his high intellect. People will aspergers can contribute to society, they just have to be given a chance,, they have to be encouraged to dream their own dream and then live it.
