When the boy we love began slipping away

Simon Bosch: colour cartoon/illo/illustration/toon/art work    12opednov9.jpg
Simon Bosch: colour cartoon/illo/illustration/toon/art work 12opednov9.jpg 

The signs were almost imperceptible, yet Joanne Wilson knew something was wrong.

"Hot cross buns, hot cross buns! One ha' penny, two ha' penny, hot cross buns!"

My son Tom loved to sing this nursery rhyme. He was 16 months old and, like me, loved to belt out that catchy tune.

In the lead up to Easter during that year though, this quaint old English nursery rhyme carried an ominous warning that all was not right. Tom opened his perfect cherub mouth but the words that came out had been altered. He had condensed the words of the song to “hot cruns”. My maternal alarm bells were ringing but I couldn't bring myself to hear them.

I remember seeing a television program at around that time. I watched a boy on the screen rocking from side to side, locked in his own world. That boy had autism and my subconscious thoughts whispered “I wonder if Tom has autism?” I stood still in our lounge room as I unwittingly made my first diagnosis of what was wrong with our son at 20 months of age. Tom wasn't rocking silently in the corner but somehow I knew he was alone and withdrawing from us all. The thought, too dreadful to contemplate, came from my subconscious, surfaced for a few seconds and was swiftly sent back to where it came from.

But nagging doubts surfaced daily.

Tom and I loved to look at picture books together and he would always name the object and then say “turn the page” as I had first instructed him to. Over time the words stopped coming. It was a gradual decline that crept up in a bewildering way. Walks in the pram gradually became silent. There was no more counting the numbers on each post-box as we passed. Tom was slipping away.

While Tom did have language at 18 months, I now look back and wonder about his understanding. Perhaps he really didn't know what “turn the page” meant; he just knew that I said it when I turned the page of a book. He would soar into the sky on the swing at the park and scream out “hold on” without holding on. He was just repeating what I said.

The day I came home from the hospital after having our second son, Harry, Tom eagerly asked to watch a video. His expectant blue eyes looked up at me as he said: “video please Grandpa”. He had learnt this phrase while I was in hospital; it had been my father who'd played the videos for him.

That afternoon I made an appointment to see the doctor about Tom. I had given birth to Harry; it was now time to respond to those alarm bells that had become deafeningly loud. The inner thoughts that insidiously plagued me for months had to be spoken. It was time to face the truth.

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After my first appointment with my GP I was told there was nothing wrong with Tom. I wanted this to be right but knew it wasn't. I went back the next day insisting on a referral to a paediatrician. It was at this time that Tom started laughing uncontrollably at night. I would wake up to feed my younger son and Tom would be giggling. It was an eerie, out-of-place sound. I wanted the madness to stop. I felt we were in a house of horrors where everything was going wrong.

Tom was walking on tippy toes and would cry whenever we had visitors. He couldn't cope with people he was unfamiliar with coming into his territory. He couldn't stand having shoes on. His shirt made his skin crawl and he needed to chew everything in sight. A 10-centimetre step from the laundry door to outside was like jumping from a great height, so he had to be helped out the door.

The onset of Tom's condition brought with it disrupted sleep. When he did sleep I would gaze at my sleeping beauty, clinging to the hope that the decay that was going on inside would stop. His angelic face, surrounded by blond curls cascading in all directions always took my breath away. He was so physically perfect.

“Your son is a little unusual” are words you never want to hear. My husband and I listened as the paediatrician told us he thought Tom had autism. Tom was still saying some words. On departing, Tom repeated back the paediatrician's words “I'll see you soon”, not understanding what they meant. Then there were further tests – an EEG and an MRI to investigate the loss of language.

Once we had the diagnosis of autism we focused on what we could do to help our son. Tom undertook applied behaviour analysis therapy for two years but we couldn't halt the destruction being unleashed inside him. Tom had lost all language at two and a half. He could only retain a limited amount of information at a time. We taught him to touch his nose, eyes and mouth but as soon as we taught him to touch his ears or another body part he would not be able to touch his nose.

Tom is now 16. He hasn't said a meaningful word for years. Last year when we went on holiday he started saying “hey baby”. Out of the blue the words came. I think these words are a combination of sounds that just so happen to approximate a recognisable phrase; one he doesn't understand.

His teacher asked “Are you sick of hearing 'hey baby'?” “No” I replied. “I just love to hear the sound of his voice again.”

This article first appeared in Pulse.