How much do the professionals actually listen to the parents? You would think that, as professionals, they would take the parent’s observations and comments seriously. We knew as soon as K was born that he had Down Syndrome. We got involved with programs that we believed would help him. He went to a nursery with a couple of other children with Down’s but I noticed K was not developing as fast as those other kids. I knew he would eventually learn what he needed to learn. The staff couldn’t handle his behaviour so they would keep him in his chair while the rest of the kids played in the park. I was shocked that they would do that! What made him any different from the other kids with Down’s? You see people with Down’s working or living somewhat independently all the time. I was sure K would learn all that too. He would just do it in his time.
I noticed there was something “different” when K was 7. He had just started walking, which I was told was due to hypotonia (low tone in the muscles). He still had not said a word and he still was not toilet trained. We began with speech therapy but we had no luck. They didn’t suggest anything else. We tried every trick in the book to get him to go potty. Nothing. My doctor just told me he was severely developmentally delayed. I accepted that and dealt with his behaviours as best I could, waiting for him to finally learn something. It wasn’t until a new staff member at K’s respite started when he was 13 that she suggested he may also have Autism. She would notice certain characteristics in him that show up more with children with Autism than DS. He would go off and play by himself. He would go into his room and sit there in the dark and quiet, listening to his favourite musical toy. Sometimes he would play with cars appropriately but sometimes he would just make the wheels spin. He would be precise in lining things up, such as toy cars, etc. We went to our family doctor who gave us a test to fill out. As I was reading it I noticed more and more characteristics, such as hand flapping and spinning. The test showed that, yes, he also had Autism. He was 14. I finally got the diagnosis I already knew.
There are programs for DS and programs for ASD but what happens when a child has both? I am still waiting for the answer to that. He is now involved in a wonderful program that has started him on Behavioral Therapy and Occupational Therapy. He will be seeing a neurologist there for his seizures. They told me that the only option I have, besides having him stay at home, is permanent care. Yes, he is on a crisis list, but that could take years because of his needs. I still hold out hope for him for the future. He has progressed by leaps and bounds just in the last few months! My favourite saying about K is “you never know what the future holds”.