We always knew AJ (not his real name) was a little different. He was born 8 weeks early so we started our lives as parents with a son who wasn’t quite the same as other babies.
When he was a little older and would play with his toys, we knew it wasn’t normal for a kid to spend half an hour trying to line up his toy cars end to end in a perfect straight line. Loud noises terrified him. His bath water had to be almost too hot to touch or he would say it was too cold. We had to cut all the tags off his shirts because he couldn’t stand them touching the back of his neck.
Even worse was the way he would bang his head on the floor when he got frustrated. We would have to pick him up and hold him until he settled down, or if he wouldn’t stand for us holding him, we would put him in his playpen which had padding on the bottom.
At three years old we got the first diagnosis: PDD – Pervasive Developmental Disorder. Even though we knew something was different about him, this was devastating for us. We were terrified, for him and for us. We pictured our son wearing a helmet and riding the special bus to school. The dreaded “R” word was brought up.
We were lucky that because he was born premature that he was eligible for state assisted services. A case worker would come to the house once a week from the time he came home from the hospital to keep tabs on his development and steer us to get him the help he needed. This was how we got the PDD diagnosis from Children’s Hospital. The case worker help connect us with the right people and we got the best services available.
We learned that his head banging was due to being unable to tell us what he wanted because his speech was delayed. Between working with a speech therapist and using rudimentary sign language, we got to the point he could let us know what he wanted and how he was feeling.
Fortunately there was no helmet in his future (there was a special bus, but it was really a van, so that was OK). We received several different diagnosis over the years as he grew and changed. Each met with a mixture of anxiety and sometimes relief.
He certainly had his challenges and I’d be lying if I said that it wasn’t scary or difficult, but when I looked at the severely handicapped children who rode his bus, the ones who couldn’t talk, or walk, or feed themselves, I felt a guilty joy that we were so lucky that AJ wasn’t that bad.
Unlike other parents, we refused to put on blinders and try to pretend that there wasn’t something wrong with AJ. We accepted the reality of the situation and did everything we could to get him the best doctors, therapists, and treatments we could.
Things never got easier for us and our son, they just morphed into different manifestations of the same basic issues. We all got through it, not unscathed, but stronger and better. Being the parent of a special needs child is never easy, but when you face the problems head on, you and your child will benefit.
Featured image by sarflondondunc