Alicia is in her final year of a Bachelor of Education and will commence her Honours later this year. Alicia will share with us her experiences as a mother of a child with severe autism as well as her continued studies in inclusive practice with a focus on ASD.
Hi, I am Alicia. I am a mother to a very special 10 year old boy, Hayden. First and foremost Hayden is a typical boy who loves everything a 10 year old boy these days love: Mine craft, Angry birds, Annoying orange, playing the drums and guitar (really loud), going to rock concerts and listening to music, however, he also has severe autism.
I have always been fascinated by autism. I was 15 when I first meet someone with autism and I have never forgotten how unique she was/is. She was a savant (a person with autism who is exceptionally gifted in a particular area). I use to visit her after school and she would show me her room full of hundreds of shoe boxes. In these shoe boxes were millions of 1cm squares of cut up magazines. By picking out one square she was able to tell me what magazine, what date and what page number it was. And some squares were more than 10 years old. I was hooked! How could someone be like this?!
After I completed high school, I got my first real job in a primary school working with a young boy with Asperger’s and ADHD. He was very talented at visual arts. I worked alongside him using art as a form of therapy. Even though he had language, he was unable to express his feelings easily. Art was that gateway to explaining that. Although I loved working with him, I was exhausted every day after work and thought I couldn’t do this full time. Five years later Hayden came along.
I knew day three of Hayden being brought in this world that something was very wrong. Whenever I had to change him, breastfeed him or touch him he would scream. Any physical contact with him would make him so uncomfortable, even painful that I would just have to leave him on the chair all day by himself. Feeding times became a bizarre ritual of wearing oven mittens and holding him away from my body so that he couldn’t feel my touch. Now, I was a young mum, this was my first (and what would be only) child and I felt like I was in a loony bin. I kept listening to good minded people telling me what I could be doing wrong but I knew deep down that there was more to it than me simply having no idea what I was doing.
Hayden’s symptoms appeared at a very young age. I went to countless doctors around 11 months of age to see if my suspicions were correct. I was told that the eyeball rolling in the back of his head, his obsessions with lights and spinning things and the rocking were “babies being babies” and I was just another neurotic mother who wanted my baby to be perfect and I should be enjoying him and not finding faults. This was actually said to me! Luckily I did not listen to such nonsense and kept searching for someone that would listen to me. It was no surprise that he was diagnosed at 15 months of age. This gave me a chance to get him involved in early intervention as soon as possible. During this stage I became deeply depressed. I had to grieve for a child that had essentially died but I was staring at him every day. It was a strange feeling.
What helped me through this time was having the support of like-minded families that were going through the same thing as myself. It was a chance to vent our frustrations and anger at the world, discuss the latest interventions and talk about the very small milestones that occurred in our children. A mother came into early invention one day who had a son that was much older than our children. Her words have always stayed with me. She said “please trust me that it will get easier”. Of course, I rolled my eyes at the time. I couldn’t even leave the house because of his autism so I couldn’t even envisage what 10 years down the track would look like but those words from this mother kept me strong and gave me hope.
I believe I have left no stone unturned with Hayden. Biomedics, Applied Behavioural Analysis therapy, diet, Relationship Development Intervention, Occupational Therapy, Speech Therapy... the list goes on. However, once he started school, I was in for a shock. Hayden was certainly the square peg in the round hole. Most of Hayden’s teachers have been brilliant but he just doesn’t fit in the system. I realised that I had to do something in order to be a part of his education. So, I began a degree in Education. Now I am in my last year (yay!) and start my Honours this summer. Basically, my Honours will be research in the area of children with autism and using art therapy to express feelings and emotions. Having this degree behind me (almost) has helped me support Hayden’s team at school. I am the bridge between Hayden and the world to help people better understand him.
Going back to that mother with the wise words... yes to an extent, it has become easier as he gets older. Partly because of me understanding Hayden better; partly because Hayden is becoming older and has more experiences in life and also because of the support from his fantastic teacher’s aides and teachers.