I think that ya'll are some pretty fantastic parents! You are really on the ball with your son, and continuing your search for help for Alex is to me the finest thing you can do for your family.
Having a child with a dissorder is very challenging, it's embarassing at times, it puts stress on your marriage and it dominates your lives. I know that since I have a son who has both High Functioning Autism and Tourettes Syndrome. In hindsight I see now that the best thing I ever did for him was also the hardest thing I've ever done in my life, and that was taking an unusual type of action that would garantee that we would get help. This was not a small set of words, like would you please help me with this, but a loud and hard cry for help for my son - so loud that no one could turn away from the situation.
At first the problem was more or less bounced back on to me to solve as I was his mother. The popular reasoning was that this normal looking kid had problems due to a) his parents were divorced, b) we had moved from his place of birth, c) I came from another country, d) I had english as my first language and spoke it at home e) his older siblings had recently and in a traumatic way lost their other parent, and e) I was a single parent of four kids.
The assumtion that my son was having rages, not taking contact with others even with his eyes, not speaking, crying nearly constantly, not sleeping at night, ripping down the wallpaper in the house, screaming when we touched him or talked to him, and on and on, had nothing to do with these other factors. His problem was that he had a disorder. My problem was that I was having a hard time convincing anyone that he needed professional help. I eventually found a doctor who set a preleminary diagnosis of MBD and Tourettes. He suggested that we give him 10mg Anafranil per day and see if it helped and he said we would have to wait at least 10 days before seeing any changes since it would take that long for anything to happen. To my greatest surprise on the tenth day he came down the stairs from his bedroom in the morning, looked at my face and eyes, and said for the first time in his life, good morning mom. I was in shock. He was not screaming or crying. Every day preceeding this day I would have to go up and catch him, drag him down the stairs while he screamed, cried and slugged at me to get him into the bathroom to change him and get off his pajamas (always under protests) and get him dressed. He wasis was a major change, and it helped us tremendously, but it did not solve everything.
Living with a special child changes your whole family. The normal interaction that takes place in a family is set out of gear when one child reacts in irrational ways towards the other children. If Peter fell one of us naturally went to him to see if we could help, blow on the bobo or get a bandaid. But in Peter's case he recoiled from us, spat back, screamed louder and cried more. That sort of got all the other children wary of trying to help anyone. They took it personally and each and every one must have thought that they were of no use towards other people. They began to refrain from having skin contact with each other since Peter "taught" them that touching hurt. They turned outwards from the family when they needed what a family can provide, instead of inwards to where the family unit was. Another factor that sped this unfortunate turn of actions was that the other children saw that I was up to my neck with Peter and that there was slim chances of getting help or attention from me. They could hardly get a word in! This led to what I felt was my family falling apart. My new husband and I were trying to put together a family of six kids but all we could see appening was that the opposite was happening.
I needed more help with my special child but I wasn't getting it so my last attempt to provide help for him was a drastic one. At this time I was pregnant with my fifth child and was so distraught with not succeeding in helping my son that I had become depressed and was in the hospital. I thought I was depressed because I could not stop crying, but it was simply a huge outlet of sadness since I knew what I had to do. I had to more or less give my son away, and I felt that I had totally failed him as a mother. I called the local authorities to report about a child that needed help since his parents were not able to provide what he needed in order for him to live a happy and good life. (I was in essence speaking of me.)
Now that got a serious reaction. He was moved into a home with a two parent family that never had experienced divorce, or had a parent die, who spoke the language here and who had never moved. It was only then, when the problem was on someone elses shoulders and my son's life was experienced from someone elses viewpoint, that his situation was taken seriously. The family that he lived with was not doubted to be a fine and normal family but if they did not receive help with this child, they would also begin to fall apart.
Today my son is 18 years old and he goes to a special school that houses four other children in his age group with similar disorders. His dosage of medication is 20mg and we are sure that he cannot manage without it is since he has tested minimising or taking it out, but this does not work for him. There are several people involved in his care at school and after school. To get to school on the mainland he goes by taxi. Peter lives mostly with his foster family as we call them on our island though he spends one night and day with me per week, two weekends with his father, and one weekend with an assistant. I go over to the foster family every other week, or they come here, and we interact (have coffee and cookies) with Peter and have done this since he moved. Everyone who is involved in his life meet twice a year, including Peter, to evaluate and plan the next upcoming months and years. We call it his Individual Plan. Peter has been actively involved in this since he was 16.
Peter's preleminary diagnosis changed from MBD to High Functioning Autism and Tourettes Syndrome when he was around nine. At that time no one in the community that I live in was competent enough to serve his needs. The community went to work immediately to educate a person in that area who was working in the center for handicapped people. That was nine years ago. Today we know so much more about several diagnosis and that should make it easier for children and families in need to get the right kind of help they desperately need, much faster. One key type of help is relief. With all the people that assist in my son's life you can be sure that it us usually more or less constantly ten.
My relationship with my son, and his relationship with his six siblings is very good. Thanks to the help that both he and I received then, and still receive, we are a tighter, healthier and happier family now that we were ten years ago. Peter is a true joy to us also. There is something very special about him that makes him different than all of us and that we all appreciate. A person with High Funcitoning Autism can bring insights into your life that no one else can. We laugh a lot when we are together and we have fun together. He can be very difficult too but so can our other teenagers. He also has to work harder to acheive many things than the other kids do, but his outlook on life is brighter, and it carries him better.
The end of his story has yet to be written and only time can tell. I dearly hope that you will be able to find the help that you need for Alex and eventually or simultaneously for yourselves. Thank you also for bringing public the situation you three have in your lives. People need to gain more understanding of this problem in order to eliviate it. Our entire society must become more informed and more assistance needs to be made available for special children in the various aspects of their lives: family, school, work. More knowledge being spread about these disorders should also stop blame from being bounced around on you and your son, and eventually it should lead to the goal of finding out what it is that causes these disorders. That is my wish.
Does your child rage, scream and kick doors? Is his or her behavior the typical brattiness of a spoiled child, or involuntary behavior beyond the child's control? Dr. Phil sheds light on a pair of widely misunderstood extreme neurological disorders. First, he looks at Asperger's syndrome, a high-functioning form of autism which can cause a person to lack control over his or her emotions, including anger. Rich and Karen's 15-year-old son, Alex, was diagnosed with Asperger's at age 6. His sudden fits of rage and erratic behavior have put a strain on his whole family. Should his parents be afraid of Alex, or is there something they can do to bring his behavior under control? Plus, Craig, 37, can't control his physical tics, nor can he keep from constantly uttering obscenities, literally hundreds of times a day. Craig suffers from Tourette syndrome, an affliction that's gotten so bad, he won't go into grocery stores, movie theatres or any public place for fear he'll be kicked out. What will the disorder mean for his plans to start a family? Talk about the show here.
