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Tina's Story
As for me, I have always been shy,and had difficulty relating to people and making friends. I now believe I have Aspergers.
After a divorce and a little girl to support, I found myself very lonely, so I answered a personal ad. It was a divorced dad with a little girl. I thought we would make a good pair. After some letters and phone calls,we met and it quickly escalated into a relationship. I got pregnant, and thought I left the hospital with a healthy baby boy.
Right from the start, he seemed different from my first baby. He hardly ever cried,..Just tried to gnaw his thumb off when he was hungry. He was a great baby, but he was sickly.
He started having febrile seizures at about 4 months old. He had reflux, chronic loose stools, and frequent infections. He was considered failure to thrive. I tried in vain to put weight on him. I kept changing formula because he couldn't tolerate any of them. I had Child Protective Services investigating me for awhile.
He was hospitalized a lot. He had mono. My own family even thought I was starving my child or something. At one point, some doctors at the University of Michigan thought he had Williams Syndrome. They wanted to do genetic testing on Justin, his father, and me.
Our tests showed no problems. Justin didn't have Williams Syndrome, but they did find a long arm translocation between chromosome 12
and 16...I think that is what saved me from having my son taken away from me.
Besides being sickly, at around age one, his behavior became very difficult to handle. He would hit, throw things, and head butt. He bashed me in the nose so hard I thought he broke it. He would bang his head on the floor and the walls. He was like a Jekyll and Hyde. He was happy one minute; and for no apparent reason, just start throwing a tantrum. The only way for me to deal with it, was to put him in his room and wait until he wore himself out and fell asleep.
I didn't know what was wrong with him, and I didn't know what to do about it. I tried taking him to many different doctors. They would look at me like I was a child abuser. When I told them he would poop ten or twelve times a day, they looked at me like I was crazy.
Going to the doctors office was a nightmare. I often had to sit him on
my lap and restrain him so he didn't hit and run into people. I often got a head butt to the face for my effort. We would have to wait so long for the doctor to call us, that he was overwhelmed from all the people, the smell of perfume, etc. He would be making obnoxious noises and everyone would be staring at us.
Finally, I learned when he was age 5, that he had multiple food allergies and nutritional deficiencies. Looking back, I think the seizure meds he was taking contributed to some of his behavior. The special diet and supplements seemed to help for many years. Now, he is going through puberty, and they don't seem to help as much.
I have no one to help take care of him. I'm on call when he goes to
school. They call me to pick him up when he has bloody noses and when he looks like he is going to have a seizure.
I had the seizures under control for about 5 years, and they started up again. It's hard to go to the store with him. Sometimes he runs off. I can't go anywhere because I don't have child care.
I am remarried and have a two-year-old daughter. I didn't vaccinate her. I do think both of my girls have Aspergers, but that beats the hell out of low-functioning autism. My son ( Justin) is 13 and doesn't speak (only a couple of words.) He has no way to communicate, except a few gestures and he can sign "more" which usually means more food or drink.
He wants to eat and drink constantly. He eats me out of house and home, and doesn't grow. I haven't given up on trying to help him, but money is an issue, and I can't find a good doctor to work with.
His real dad passed away in August. He really hadn't been a part of his life anyway, but I was going to take him to visit about six days before he died.
My little girl (Hayley) loves her brother Justin.
