Our experiences: Parent testimonials

"Life was not always like this for my daughter."

Life was not always this way for my daughter!
In order to remain anonymous I will call her Dee.

Dee was born almost 13 years ago. She is our 2nd daughter. Everything seemed fine until the age of about 1 year. I noticed that Dee was not responding to her soiled diaper. She did not cry. Originally, I thought she was the easiest baby but I knew something was not right. When she wasn’t speaking by the age of 2 or 2-1/2 I asked her pediatrician about her development. He assured me that everything was fine. He claimed that she was a late bloomer. As time went on, my husband and I became very concerned. We had Dee’s hearing tested which came out fine. We had her neurologically tested which showed nothing abnormal. By the time Dee was 3, we had her assessed at a very reputable hospital out of town. The assessment team was made up of a pediatrician, a neurologist, a psychologist and a social worker. The diagnosis was that she was a puzzle with autistic features. They also informed us that 70% to 80% of autistic children suffer from some sort of mental retardation. Well, where did that leave us? They recommended that we send her to a special school for autistic children and told us that in time we would learn to accept her condition.

Although this was very hard to listen to, we couldn’t deny that Dee had many of the features that would lead to a diagnosis of autism. She had no speech, no eye contact, did not play appropriately with toys. Her idea of playing was to remove the tin cans from our pantry and line them up in rows. She always covered her ears with her hands. She was extremely sensitive to certain sounds and touch. She was very defiant and constantly threw temper tantrums. She was severe! I was afraid to drive in a car with her because I never knew when she would explode into a tantrum while I was driving. I always had a fear of getting into a major accident and both of us winding up dead because I just was unable to control this wild human being. One time, we had company over including some other children and Dee lay in the middle of the room on the floor, holding a string above her face and playing with that silly string for hours, oblivious to anything that went on around her. She was in a world of her own! She never called me Mom or her father Dad. She did not even attempt it and she never responded to her name. She did however respond to a certain song of one of the popular children’s TV shows, “The Elephant Show”. Every time that show came on TV, she would come running even if she was at the other end of the house. She had selective hearing, which I found so odd! In the mornings she would come into our room but not to be with us or give us a hug. She came in to play with the buttons and controls of the TV, oblivious to us or so it seemed. The truth is, when I look back now, the fact that she came into our room meant something. It was her way of being with us but at the time I didn’t realize it.

At this point we came in contact with Dr. Phil Zelazo and had Dee tested. His test is what saved Dee! His test did not depend on speech, appropriate use of objects or doing what the tester asked. He was able to tell if a reaction would occur to certain stimuli by hooking up her heart rate to a monitor and recording the changes in heart rate and a host of other behaviors such as looking and speeking in response to the stimuli. Dee sat on my lap in a room. In front of us was a little show. In part of that show, a car rolled down a ramp and hit a block knocking the block down. This happened six times. The seventh time without warning, when the car hit the block the block did not fall. At this point there was a change in her heart rate and behavioral responses which meant her responses were age appropriate implying normal intelligence and that she was understanding the change. That was enough for me! I had someone tell me that Dee was mentally fit and capable and even though her development was unusual it did not mean it could not be fixed.

Dr. Zelazo’s book “Learning to Speak” is what helped me develop Dee’s speech. We did 15 to 20 minute sessions a day for the speech and applied behaviour modification techniques throughout the day whenever needed to shape appropriate behavior. Dee used to dump out her drawers for entertainment and the first time I decided to correct that behaviour I spent 4 1/2 hours in her room with her getting her to put back her socks back in her drawer. I had to physically put my hand over hers to grab the socks and put them back and in the process use many time outs to get her to comply. It was a long and slow process but worth every minute spent. Dr. Zelazo’s program helped Dee and helped me. All the behaviours were broken down into little parts and we worked on shaping them with positive reinforcement one step at a time. Dee would progress 2 steps and then fall 10 steps back.

By recording data, I was able to monitor her progress. At the beginning this is very important because change doesn’t happen in leaps and bounds. It happens in tiny steps. As time went on Dee progressed. There were many many obstacles to overcome. She always went to a regular school. She was at the bottom of every class and could not keep up with the other kids but we fought to keep it this way and worked with her tremendously. We always maintained that even though she was behind other children she was learning at a faster rate. After all, she started 4 years behind. Dee was a big puzzle. She gave me little pieces at a time and I had to piece them together. i.e. When she learned to write her name, she had letters all over the page in no order, but when I looked hard enough I saw that all the letters were there. They were just illegible and in no order whatsoever. Well, I had to look at the positive. The letters were there.

I won’t tell you that this was easy. This was the challenge of my life!! To get her to be compliant was more than a challenge. She was stubborn but I was determined to be more stubborn than she was. My own mother felt I was cruel when I put Dee in time out, in the bathroom, over a tantrum she was throwing. The behaviour modification techniques I used worked tremendously, and I used them wherever I was, no matter what anyone thought. After all, what did they understand? Did they have a child like Dee? I did not originally choose this way of teaching but it was my responsibility to help my child. I learned very quickly not to care what anyone thinks. I had to do what I had to do to save my kid! I left a full time career to stay at home and help her develop, not knowing where all this would lead! I used to worry about Dee all the time, every minute of the day. I worried about her future and felt that her future depended on me. There were many ups and downs. I do NOT worry today. I know she can do whatever she sets her mind to. She is very capable and her future is up to her. She is bright, beautiful, and we have a warm and loving relationship. People adore her. She is friendly and sociable and, trust me, none of the behaviour modification has affected her will. She has a mind of her own!! (Like most teenagers). Oh, she has her quirks! She is super sensitive to things that are said, and is very literal. Things have to be spelled out to her sometimes, especially when it comes to her social skills, but she is all there!

All the years that I thought she didn’t understand things and wasn’t listening were false. She understood everything. She had difficulty expressing herself.

Not everyone is lucky enough to meet someone like Dr. Zelazo. His testing, treatment program and guidance have made all the difference. I have seen many children who did not receive the right treatment, for one reason or another, and their future is limited.

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