Asperger's or cheeseburgers
I turned 55 this month. I should be looking forward to a break. A time to travel, have a little fun and relax. Right?
Well, guess what: I decided to adopt my grandchildren. They are now five and six. I just could not live with the alternative, which was foster care. Their parents love them to pieces, but they aren't capable of meeting their children’s many needs.
The story starts with my child. He was a gorgeous blond-haired boy born in 1973. From kindergarten on I was told there was something wrong with him. He had special needs due to learning disabilities caused by, well, caused by every diagnosis imaginable. He'd be diagnosed with one thing and when that did not ring true another diagnosis would be the answer. And of course, along with the many diagnoses came prescription drugs, special education classes, therapy appointments, hospital admissions and residential treatment placements. As I write this it makes me sick to my stomach. How on earth could any child have a stable, nurturing environment under those conditions?
I don't remember my son starting out with behavioral problems, but by the time the system got through with him he had plenty. I never considered that "they", the professionals, didn't have the answers. I thought special education teachers knew what I did not. I did not know that medication made him sick and that the side effects might outweigh any benefit. Looking back, I don't recall any benefit to him taking medication.
Hospitalizing him served to help gather data but nothing worthwhile ever came from it. He was kept in close observation, which boils down to being watched by strangers, taken out of his home kept from being in the theater program he loved. Therapy for him turned into talking therapy for me, keeping me intact while I was stressed from trying to conform and follow the multitude of recommendations of his child psychiatrist.
You cannot begin to guess the amount of money spent on this child. I wanted to stay home with my son and teach him myself, but I couldn't afford it, or so I thought. I had to work. There was no program to help me keep him home. But there were plenty of funds to send him away.
A few years ago, I was watching 60 Minutes when I saw a segment about a woman who changed the cattle industry in this country. Her name was Temple Grandin. As I heard her story, I recognized that her behavior was similar to my son’s behavior. I researched "Aspergers Syndrome" as soon as the show was over. I thought my heart was going to pump right out of my chest! I bawled my eyes out that night reading about someone just like my son, wishing I had understood this years earlier.
I arranged for testing and the diagnosis of Asperger’s was confirmed.
Asperger's is not a mental illness. Children with this diagnosis need help connecting one experience to another so they can learn social behavior. This is done with an aid. Someone who can explain a situation when they don't understand. For example: a child may be playing with other children and all of a sudden find himself in trouble. He may be able to say what was said and what he saw but because he doesn't quite understand the social meanings behind the actions he is left confused and an easy target to be picked on and easily set up to be taken advantage of. One way or another, these children need someone to fill in where they do not have understanding until they do.It is that simple. Everything else stays the same as with any other child. Of course what children need is a whole other topic for me.
So I started out with a child who needed help understanding social situations and created a child who grew up having behavioral problems, anxiety, depression, problems sleeping, self-esteem issues, paranoia, an inability to trust and the list goes on.
How much has all of this cost? Good question. Of course there is the monetary consideration. But what about the cost to society? My boy managed to stay away from drugs and from breaking the law. But others like him have not been so lucky. It would not surprise me, if I could talk to God, to hear him tell me that these misunderstandings and misdiagnoses are the reasons our families are slitting up and our jails are filled.
Hindsight being 20-20, I wish I had gone on welfare and stayed home with my son. A lot of the problems he now has could have been prevented. The price of staying home and living on a poverty income would have been much less of a price to pay and better for him than the price he has had to pay.
As for his two children, my grandchildren, the ones I just adopted, they have lived with me for a little over two years. They came to me with special needs. I do not mean mentally retarded. Right away I decided there would be no hospitalization for them, no medication and no residential treatment facility. I would treat them as if they were as capable as any other child could be. I enrolled them in Head Start, then preschool. I enrolled them in karate and swimming. I gave them a stable home with a lot of love and discipline and more love. I brought them to all the community events and before long they knew a boatload of kids in Belfast. They now feel as though they belong. Their little bodies became strong and this last month they made the Blue Fish Team at the YMCA. Yes, they both at five and six can swim the lap pool at the Y with no floating device. Now that is measurable proof of what they are capable of learning.
I have learned through this ordeal that the answers do not always lay with the professionals but rather with me. Knowing what I know now, I am happy to pay on the front end. Meaning investing the time now with the kids rather than trying to help them pick up the pieces later. Both children are whole, right now at this present time and I intend to keep them whole by protecting their spirits and watching over them myself.
My son’s response to the diagnosis of Aspergers was: “Asberger's or cheeseburgers, what difference does it make what the disability is!” He is so right on. So this is the name of my new book, "Asberger's or Cheeseburgers." I hope to have it published by next fall.
Dale Tempesta lives in Belfast.