Autism, A Mother’s Story
by: Marion Pusey
Shows Eric at 6 years old, at 15 years old and at 19 years old. Eric did the “Sunset” picture at 5 years old before he could talk !!!!
Before Eric was born, I was a nurse specializing in premature babies i.e. working at CHEO – Children’s Hospital of Eastern Ontario in the Neonatal Intensive Care Unit. Everything changed when Eric was born. Eric was born with autism but I could not get a diagnosis until he was 5 1/2 years old. His diagnosis was “autism with severe global delays”. My nursing career ended so I could take care of Eric.
Eric and Shaun (my sons) became my life’s work and through all my experiences (a lot of nightmares and horror stories) my passion has been to help other families so they won’t have to experience the same frustrations, nightmares and heartache that I have gone through. I figured that I could best contribute to the growing autism community by helping to provide visual resources i.e. Picture Card Communication and to be a supporting friend to other families who have loved ones with autism or other special needs.
Eric started his first words around 5 years old e.g. “milk”, “juice”. Up until around 8 – 9 years old he was echolalic; repeating everything he heard without showing any signs of understanding what he had said. Not having hardly any resources in Ottawa except the early form of ABA/IBI, I had to go a lot on instinct. From the very beginning, I kept talking to Eric and described everything we did and saw. … I figured that I did not know how much Eric was taking in even though he couldn’t talk. As I found in years later, Eric was remembering what I had said and done.
Eric was tactile defensive and had to learn about touch, textures, etc. He also had to get used to different sounds, volume, intensity, sudden noises e.g. balloons popping, school bells, etc. Eric also had Pica (i.e. he would mouth / put everything in his mouth), BUT I had an extremely hard time feeding him. No doctors understood the feeding problem and blamed it on autistic behaviours!!! As it turned out, we finally found out when Eric was 8 years old that his stomach wasn’t formed properly and he had to have surgery to rebuild it. Eric did not have the ability to let us know how he was feeling physically and emotionally.
Everything that Eric has learned had to be broken down into small steps. When Eric was around 7 years old, I took him to Beavers (part of the Cubs Scouts/Brownies/Girl Guides organizations). My instinct was to try to socialize him within the community. Eric was a pilot project because none of the leaders knew anything about autism. Also, Eric had very few words and no give-and-take conversation. On one of our outings with the Beavers, we went to a wave pool with a big water slide. Eric kept on pulling at my leg and pointing to the water slide…. I did not know at the time that Eric could not “generalize” i.e. whatever happens to other people coming off the water slide will happen to him. I decided that with Eric’s interest still there after watching about 30 people going under water at the bottom of the water slide, that I could double ride with him, holding him up at the bottom of the slide. …Well…we both went under water. All the way home, Eric kept repeating two brand new words “NOT FAIR!! NOT FAIR!!” The next day, Eric picked up a pencil and paper and started drawing water slides. Water slides have become one of Eric’s intense interests. He can draw them to photographic detail and quality. I figured out that with Eric’s intense interest in water slides, to take his interest and use it as a learning tool to grow and expand on. To this day, Eric’s love of water slide parks and amusement parks is so strong that he is taking courses at college so he can design and build them.
One of Eric’s unusual savant skills (he has 3 – art, math and music) that he started, he started playing the piano incredibly well, perfect pitch and ear all of a sudden. He had never had a lesson!!! He just sat down and played!!! He played piano (and now music keyboards) so he could describe his feelings about water slides through music. Eric can sit down and play any music he hears and likes within 5 minutes!!!
Six years ago, Eric could not understand or handle the world becoming more complex. The schools believed in (forced) integration i.e. “no choice” and that autistic children would become “normal” if they were around normal children!!! The schools never had enough money for a teacher’s aid for Eric. In grade 6 & 7 Eric had to share a teacher’s aid with 6 other children throughout the school. The teachers did not have a clue about autism and I as a parent was not allowed to go in to help Eric. The teachers did not adapt what they taught i.e. more visuals, letting Eric use “point form”, giving Eric copies of the notes, etc., etc. With all this happening my autistic son Eric became extremely aggressive, becoming a danger to himself and everyone around him. He would be sent home i.e. suspended from school at least once or twice a week, if not more because of “0 violence tolerance”!!! The Children’s Aid Society said that they would help us only in an extreme crisis.
That crisis happened when we changed a routine slightly and Eric attacked his younger brother. I peeled Eric off his brother, and then Eric continued attacking me. Eric’s brother ran upstairs and called “911″. Eric was taken to CHEO. All the doctors and Eric’s Neurologist would do is “drug him out” and send him home or I could take him to the Robert Smart Center. Eric spent a week at the Robert Smart Center, and then was transferred into “the Cottage Program” which was a part of the Royal Ottawa Hospital. Eric spent 6 weeks in the “Cottage Program” where they experimented giving different medications to Eric. The ROH staff knew nothing about autism!!!
During this whole nightmare, the Children’s Aid Society found a placement for Eric with Bairn Croft Residential Services. Bairn Croft staff specialize in children and young adults who are on the ASD spectrum, or have any communication, developmental and/or social delay or disorder. Each child’s care and programming is done individually to meet each child’s Individual needs. The families are considered a major need in the child’s life and are included in the “plan of care”. Eric comes home to us on weekends and holidays. Under Bairn Crofts care and guidance over the last 6 years, Eric has flourished. He has learned “skills of daily living”; he is now living semi-independently, has graduated from the Precision Machining Technology Program at Algonquin College, plays bowling with Special Olympics, has a job, has a girl friend and has many friends. By the way, if these kids do make it through to college, Algonquin College makes any adaptations necessary for their “special needs students” to be successful. …….. They have been amazing with Eric!!!
Eric is very happy and very proud of his achievements and we are extremely proud of him.
Through all this Eric has become fully verbal.