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our story
My son, Adam, was born on April 10, 1989. He has Asperger’s syndrome or high functioning autism. Age wise, he is on the very leading edge of the tsunami of autistic children. As such, he was not correctly diagnosed until he was 8 years old. We took him to a well known medical center for a diagnosis and specifically asked if he was autistic, and they said no, just PDD – Pervasive Developmental Delay. Today he would have been diagnosed years earlier as he had all the classic symptoms.
I will never forget the evening when Annetta, my wife, was researching on the internet. I call it Internet .5 of the 90’s since it was limited information and rough finding data. She hollered for me to come and see something. It was a list of the primary characteristics of someone with Asperger’s Syndrome Every item on the list was one Adam exhibited –lack of eye contact, low muscle tone,lack of attention span,etc. Within a week we had a confirmation of the diagnosis from the TEACCH organization at the University of North Carolina in Chapel Hill, NC.
In the middle and late ‘90s there were no standards or “best practices” protocols to provide for the best possible outcome for autistic children. We were in the dark and Annetta spend hours researching and reading about Autism and the many varied programs that were available. Each was advocated by practitioners who had seen it work. She attended conferences, we bought several pieces of equipment, attended programs, diets - tried them all. Some worked, but to varying degrees, and never the way it was presented.
During this time we had the usual “fights” with the public school system during his elementary school years. They were as much in the dark about how to best handle autistic children as we were.
As luck would have it a new Charter School opened up in Chapel Hill the year Adam would have gone on to High School. It was Pace Academy. It was made up of a dedicated group of administration, teachers and staff all of whom catered to the needs of high school kids who were otherwise failing in the public high school setting. They made incredible accommodations for differences in behaviors, academic ability and learning styles of their students.
For example: We were called in one day because of an incident where Adam had taken a swing at the head master. She called us into her office, closed the door and explained what happened. She nearly apologized for having to suspend Adam from school, but as she explained while Adam wasn’t strong enough to hurt her, some of the other students saw it and if it went unpunished she was afraid some of the other bigger students might try to do the same thing. So Adam was suspended for the rest of the week and started again on Monday. In a public school setting Adam would have been suspended for the rest of the year – good bye education.
That is just one example of the accommodations PACE Academy made to help all its students be successful. Adam attended Pace for 7 years and I can honestly say, without the influence of Pace Academy; Adam would not be anywhere near as successful as he is today. Pace Academy was a special place, catering to the varied and individual needs of a group of unique high school students.
Over the years the one thing that has made the most difference in Adams behavior, attention and socialization has been his diet. He is allergic, in varying degrees, to most food found in the Western Hemisphere. Specifically he is on a gluten free, corn syrup (look at the ingredients in most food today and you will be amazed at how many have High Fructose Corn Syrup), corn, food dyes and colorings, etc. His diet consists primary of potatoes and rice, vegetables, most fruits are OK in limited quantity and meats cooked without any sauces or flavorings.
When he goes off this diet, he becomes another person, and not a pleasant one to be around. We talk about his Dr. Jekyll/Mr. Hyde personalities.
He also takes about 60 over the counter vitamin pills a day to compensate for his leaky gut.
Several years ago at a conference Annetta purchased a dry sauna that is heated with infrared heating elements. This is now a daily ½ hour sauna in the morning before his shower. After his sauna he puts on boxing gloves and punches one of those huge punching bags that hangs from the ceiling. These two procedures make a significant difference in his ability to adapt to changes in his schedule that might occur throughout the day. It makes a difference which we can see when he does not have these activities at the beginning of his day.
We have tried a number of physical activates over the years. Therapeutic horseback riding was a disaster. We didn’t find out why until a couple of years later, but he is extremely allergic to horse dander.
Our latest “find” is B-12 shots. We give him one weekly and when it goes 9-10 days without a shot, his behaviors begin to change. We had to go through several physicians before we found one who would prescribe it for him. In the physicians creed it says “do no harm” and since B-12 would not do any harm and we had said it improves behavior, we got the prescription.
Today, Adam lives with us. He has aides who are with him part time during the week. He works at a sheltered work environment for Autistic adults in the laundry service and dog walking. He also volunteers at a local hospital one day a week and delivers for Meals on Wheels.
Our next big concern – where and how will Adam live when we are no longer able to care for him? This is an emerging concern for many families with adult children with autism. No one will care for him as well as we do – of course not. But how do we create a setting and support structure that at least works for him. If we win the lottery, I am sure we could find it. But short of that, it is a major concern for any parents with an autistic child who cannot live alone.
It is my goal, in doing these runs, to bring greater awareness of the daily struggles a family with an autistic child go through. It is my desire that no family ever have the challenge of raising an autistic child.
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