My son has autism.
He came to live with me when he was 9 years old. He was small for his age and the two years that he had been in and out of foster care had frozen him. At the age of three he contracted pneumococcal meningitis and lost his hearing. At four he received a cochlear implant. At six his primary carer (grandmother) died and he went into care.
Like most children in care in Australia, he was in and out of care as the department tried for reunification with his alcoholic mother. She tried, she really did, but the lure of the bottle was too strong. The impact on children like my boy though is traumatic.
By the time he was brought to me, he was frozen. There were often times when he stood still, nothing going on in his head, waiting for someone to tell him what to do. At seven he said that he was saving all his hugs for his mum, so the carers stopped hugging him.
His first night at my house I said the rule was that you had to have a big squashy cuddle goodnight. That little boy could not get into my arms fast enough. All sticks and bones and desperation. His case manager took him home after the weekend and asked if he thought he might like to live with us. “Oh yes,” he replied, “they just love me!” We do.
The combination of deafness with artificial processing of sound, autism, a short term memory disorder and a language disorder combined to cocoon him in his own world. Even today he will speak his mind (yes, he is very opinionated), asking questions and answering himself. On one occasion, when he was still small, he was chatting away to himself in his room and his case worker dropped in for a visit. “Oh, has he got friends over?” “No, that’s just him,” I smiled. “Goodness, it sounds like an entire basketball team!” Sure did.
As he thawed, he began to release a lot of anger. I had no idea so many things could get broken. The only thing that really upset me was my ceramic frog in the front garden. This large frog had many adventures as my bush garden was used for hide and seek by the neighbourhood children. I was never sure where it would end up, it was always moving around. One morning I came out to find it smashed to pieces. I burst into tears and my boy looked at me in bewilderment. It has taken many years for him to grow empathy and understand that actions have impact.
Growing empathy. His response when people hurt themselves was to point and laugh, sometimes when it was scary, not funny at all. Step by tiny step I took him through appropriate responses. When he was ten he would play with my Scruffy dog, who being a little old and grumpy, would growl at him when he had had enough. My son would storm off into his bedroom and draw pictures of die scruffy die. I explained over and over that using your feet to ‘play’ with an animal was not appropriate and hurt him. “He should know,” my boy cried in frustration, “he should know I didn’t mean to hurt him!” Two years ago my little Scruffy mate died. I was bereft. The neighbours brought the children to the vet, where Scruf and I were waiting, to say goodbye. All the way there he patted the back of his younger sister and said, “It’s alright, it’ll be okay. He knows we love him.” My boy dug a beautiful hole in the garden for our dog and we sung Scruffy into sleep, all crying. My son cried too. He understood and had grown in empathy.
We love to laugh. It’s one of my favourite occupations and I often play tricks on the children. My son loves it when the trick is on him. One time we were visiting friends in Port Macquarie and walked along the river esplanade. There was a large sign for the caravan park and on top was a matching set of pelicans. “Look!” I called to my son, “Check out the pelican statues! They move too!” He watched in amazement as the pelicans turned their heads at the same moment to look out to sea. Then one flapped it’s wings. I was doubled over from laughing. “Oh Mum! That was good, I really thought they were mechanical statues!” He often asks me to tell that story and has it on his list for his 21st.
There was the time I hired a Hyundai Getz as my Mitsubishi Lancer was having panels repaired. I opened the door to my son and as he hustled in out of the rain, I pointed to the little Getz and remarked “Look what all the rain has done. It shrunk the car!” He turned in astonishment, then grinned and shook his head, “Oh, Mum! That’s funny.” He’s always been a good sport about my tricks although other people can be critical. He is often reluctant to change the batteries for his cochlear implant, just because he can’t be bothered. When it is obvious to me that he hasn’t changed them, I talk intermittently as if sound is cutting out. He just rolls his eyes and gets the batteries out of his pocket. I’ve had other people take exception to this joke but if it works for us, it works.
Last year my boy’s mum died. She died of her alcoholism and it was so sad. The best Christmas had been two years previously when we had all been at my place and we have the loveliest photo of the mums and kids from that time. He spoke at her memorial service. He speaks really well. When I met him he spoke in a staccato monotone. She would have been so proud of him, he spoke beautifully. We all cried.
He’s eighteen now and getting his driving licence, finishing school and getting ready to head out into the world of work. We were fortunate to receive a bungalow from Kids Under Cover so he has his own little unit in the back yard. Feeling very grown up.
How does autism come into all this? You know what, it does and it doesn’t. Understanding the disorder gave me a place to teach and helped me understand how he learnt things. He finds it difficult to keep his opinions to himself and shares them volubly. He finds it difficult to understand others’ behaviours and is not very tolerant of differences (yes, that is ironic as he is the boy who walks through our small town talking to himself out loud and gesturing). He deals with depressive and anxious thoughts and has me to remind him how many people care for him and to count his blessings.
He also has a very big heart and cares passionately about many things. He cares passionately for us, his family and justice. He is almost ready to step out and find his place in the world. He is beginning to understand how I taught him by watching his little nephew who has autism and seeing the step by step process.
My son has autism. I couldn’t be more proud.
- Audiologists Can Earn Cochlear Implant Specialty Certification During CI Symposium 2013 in Washington, D.C.; Deadline to Register for October Exam is August 26 (prweb.com)
- What is a cochlear implant? (firststepshl.wordpress.com)
- 6 Common Myths About Autism (everydayhealth.com)