Welcome to My World of Autism

Article By: Cynthia Creary
Article Date: 09/21/2008

Welcome to My World of Autism
By Cynthia Creary

(A Mother’s story of her journey with her son diagnosed with Autism)

My parenting route was not as I had predicted. I would like to share my experience in the hope that another parent may read this and feel not so alone and scared. To me, Autism is not a disorder, but a unique way of life. I did not always feel this way, nor did I foresee that Autism would be a blessing, not a hindrance, for me.

“Your son has Autism.” These four words change your life and your whole perception of the world around you. If you are like me, I had no idea what those four words meant when I first heard them. Part of me wanted to disbelieve. Part of me wanted to cry. Part of me was angry. I was incredibly confused. However, I was quickly grounded when my dear friend, Linda, looked at me and questioned why I was crying. “This doesn’t change how you feel about Alex*. And it certainly doesn’t change how he feels about you. It only means that you now know what it is, and doors will open for services needed to help him.” I was truly blessed to have someone say this to me. It brought me back from the “Flight” mode and into the “fight” mode. A fight to help my son.

The first thing was to learn as much about Autism as I possibly could. I attended all workshops regarding not only Autism, but behaviour management, anxiety, sensory sensitivities, toilet training, promoting language, and skill building. There were several workshops offered by our Region Support Services at various times throughout the year. As well, there are always speakers visiting the community, offering evening workshops and short conferences to those interested.

In the meantime, my husband and I needed to develop a profile of the areas of strength, and areas of need in our son. It was so easy to point out his needs, while we struggled to find some strengths. Everything was so hidden beneath his solitude surface. However, with keen observation skills, we could detect the many marvels that existed within our beautiful boy. He worked so hard at everything he did. He always wanted to please us, or the gentle dedicated people who provided therapy to him. We worked together to complete reasonable goals and objectives for Alex. We needed to determine the areas that we needed to be educated in, as well as the areas that we needed to focus on.

Needless to say, we also needed to stay in sync with each other. We needed breaks now and then. Without family around, we were fortunate to hire a day care teacher to babysit on a consistent basis. Every second Thursday, we had date night. We would go out to dinner and feel comfortable knowing that the day care teacher was fully capable to deal with matters at home. Actually, it was harder for me than it was for Alex to adjust to this. I needed the push to get out the door.

However, I was in a learning curve and discovering knowledge as I continued. I learned to set clear ground rules and be consistent. I learned to avoid all power struggles, and to give choices. Overall, I learned that if I remained calm, then this would reflect on Alex, and he would be much calmer. It is always important to remember that our emotion will mirror theirs. I found that lowering my voice to just above a whisper when Alex was upset seemed to bring him back down. He needed to stop screaming to try to hear me.

As well, transition times are always unsettling. I learned to give warnings about what was going to happen, or where we would be going and when. I also built in scenarios to let Alex know that sometimes, things change and we would still be fine. Although I was trying to keep things predictable for him during the early years, I knew that I needed to build in flexibility. The world is not a predictable place, and Alex needed to learn to be adaptable. He still needed to learn how to cope with those random changes which keep life so interesting. We broke things into “big deals” and “little deals”. We both learned that there aren’t too many life experiences that are really “big deals”. Therefore, Alex learned to shrug off those previous anxiety provoking thoughts.

However, Alex had some other challenges that I always had to take into consideration. He was auditory sensitive. Alex could hear the planes, trains, ambulances and fire trucks well before anyone else even noticed. Some loud noises not only seemed to scare him, but they also seemed to hurt him. I tried to train Alex to put ear plugs in when things bothered him, but this proved very trying and non-successful. Alex could more easily put his hands over his ears than put ear plugs in. Nevertheless, trial and error was necessary to find what would work for him. During the ear plug training, Alex put his hands to his ears and I did the same. I quickly removed my hands and smiled. Alex did the same. For the next few months, I put my hands on my ears whenever I saw Alex do it. I would quickly remove my hands and Alex would do the same. My son’s imitation skills were excellent. I knew that this was the best he could manage at that time. I figured that this was a success when trying to deal with a sensitivity that I could only imagine what it was like.

Sensory sensitivities are very complex, and should not be treated lightly. I once worked with a girl who was very light sensitive. She would come into the classroom, sit at her desk and close her eyes. Of course, everyone tried to make her open her eyes and keep them open. With this, the girl would squint and at times, throw items at people. She was clearly not enjoying the classroom experience. Her teacher could see her discomfort, and allowed her to wear a baseball hat in class. The girl kept her eyes open and was much happier. It was important to remember that often the behaviours that are demonstrated are not done out of malice, but out of discomfort.

It is also important to keep developing new goals, new strategies and new intervention plans. When Alex was younger, we focussed on speech therapy – expressing his wants, desires and making simple requests. As he mastered this, we moved on to social communication goals – greetings and conversation skills. This is a never ending cycle. There are so many hidden skills/talents that come naturally to mainstream children, while they all needed to be taught to Alex. Simple body language cues were foreign to him. There were times when his younger brother became angry and put his hands on his hips and turned his head from Alex. Alex did not seem to notice or care. He just carried on with what he was doing. This is where I needed to start training family members on what to do with Alex. He needed to learn that certain body language expressed emotion. And, it is truly amazing to watch the eager, patient teaching of one child to another. It really is an invaluable method. A peer teaching another peer is so very effective, and should be tried whenever possible.

Alex is now a teenager and taking College level courses at high school. He still struggles with social communication but is constantly learning. He questions what he doesn’t understand. Alex asks if we are joking when he is confused by sarcasm, teasing or unapparent humour. Questioning has been essential for Alex, as he now understands that it is okay to ask for clarification. He has transferred this skill into the classroom and now raises his hand to let the teacher know that he needs to have the lesson explained differently because he doesn’t understand. We have continuous discussions and modelling to help with his processing skills.

To conclude, I don’t know where Alex will be ten years from now, but I do know that he and I will be happy where we are. I look at Alex as the most pure individual that I know. He has no inhibitions. He is honest. He is kind. He would never intentionally hurt someone. When Alex is happy, he actually jumps up and down and shouts out in glee. When he is sad, he cries with the deepest heartfelt grief that I have ever heard. He is pure. I know Alex is wonderful, and people who take the time to get to know him, also see what a remarkable teenager he is. I try to never look back, and not to hold grudges against people who have said things that no mother should ever hear about a son. Ignorance is not an excuse, but it is out there and has to be dealt with. My most trusted advice is, and always will, be that a mother knows her child, and needs to follow her gut instincts. If something is problematic for your child, then you set your goal(s), and follow a consistent plan. Every child is unique and needs to be nurtured in different ways at different times. Don’t give up. Keep smiling and enjoy the possibilities. The possibilities are endless. You just need to discover them.

© Cynthia Creary 2008

*The name of the child has been changed for privacy purposes