How It All Began ...

I still remember that fateful day as if it were yesterday. It was the Friday before Labor day in 1995. Mark (my late husband) and I sat in the room at the Developmental Evaluation Center in Raleigh and heard the words “We suspect that your son is autistic” and then “He may never talk” and then “You will probably need to institutionalize him”. As the counselor continued with her dire predictions, I finally told her to “STOP!” and asked her to leave the room. I couldn’t stand to hear another word from her. Then I burst out sobbing. At that moment, the course of my life changed but I didn’t yet know it. I had become the mother of a special needs child.

Mark and I stood in the empty parking lot afterwards and cried on each other’s shoulders. I desperately wanted to talk to somebody who could tell me it was a mistake. But it was after 5PM on a 3-day holiday weekend. I would have to wait until Tuesday morning. An agonizingly long time to wait.

Mark called his best friend, Jack, and told him the news. Jack worked with children who had autism at the UNC-Chapel Hill TEACCH center. He said he would come over immediately; surely he would reassure us that the evaluators at the DEC were wrong.

Since you are reading this on the Autism One site, perhaps you have already figured out that it wasn’t the DEC who was wrong.

Kenny’s story is familiar to many -- I’ve been around in the Autism Community for a long time. But just in case you haven’t heard our story, here is a quick summary.

We adopted Kenny from Korea. He arrived when he was about 6 months old in December, 1993. He had been born at 32 weeks, but weighed an amazing 5 lbs, 1 oz. when he was delivered. A week and a half after his arrival, I took him for his first “Well Baby Check”. He got his shots. A couple of days later he developed “croup”. And then he developed a rash all over his body. With the benefit of hindsight, that was his first adverse reaction to a vaccine.

During the ensuing months we battled one ear infection after another, with antibiotics only seeming to worsen his torture. He broke out in hives when we tried to give him solid foods. “Don’t worry,” we were told, “just feed him formula until he’s 2”. He had constant gas. I discovered, quite by accident, that he reacted to the dye RED 40 by becoming extremely agitated, when I bought a cheaper brand of gas medicine at the grocery store. Our pediatrician finally put two and two together regarding the antibiotics – they had RED 40 in them too! No wonder he was miserable! He had food allergies and eczema that was so itchy he scratched himself raw. By this point in time, the nurses and I were on a first name basis.

Fast forward to his 15-month checkup. Our pediatrician wanted me to allow extra time at the office since Kenny was allergic to eggs, an ingredient in the MMR. Just in case he had an allergic reaction, I should be prepared to go to the ER. Because we also had a 4 year old daughter, my husband had arranged to take the time off from work that morning. But the day before the appointment I had changed at least a dozen messy diapers, so I was sure they wouldn’t want to give him his shots. I told Mark not to worry about coming home. I would take both kids and just get Kenny checked because of the diarrhea.

But that’s not what happened. Our pediatrician (who, by the way, is a wonderful doctor) followed the advice being given to doctors to vaccinate even if a child is sick. Kenny got the DPT, MMR and OPV that day. He had an immediate but mild reaction – a slight rash on his body. But he was very agitated. A couple of days later I called back to report that he was still very agitated. And then, two nights later, we were woken at 5AM by a blood curdling SHRIEK! My first thought was that somebody had broken into the house and was strangling him. I rushed to his room. He had a fever of 104.6. I anxiously called the pediatrician’s answering service. Our doctor called back immediately, but reassured me that he wasn’t having a vaccine reaction and to bring him into the office at 8AM. But one year later we were at the DEC.

Kenny was never the same after that. As he approaches his 16th birthday, he can’t read or write, and speaks mostly in one word utterances. (The less effort, the better, as far as he’s concerned!) He has severe reflux and must take massive doses of medication for it. He has ADHD and severe mental retardation. But when he’s feeling good, he has a smile that will light up the world!