When Debra was told her son Tobias had autism, she describes the feeling as having a brain freeze after eating really cold ice cream – but the difference was the feeling didn’t go away.
When Tobias was 2 ½ years old, he had very few words, little eye contact and was still crawling. At the time, I was a new Mum with very little understanding of a child’s development or the challenges for families with a member with a disability.
I recall his first year and realising that yes, something wasn’t right. I was frequently comparing the milestones of my niece who was 3 months older, with Tobias.
He was a premmie and so was expected to be delayed somewhat and yet as time passed, the gaps became more obvious and my knowledge of this gap equally so. I could see there was a delay but receiving the autism diagnosis is hard to describe.
I had asked Mum to come to the appointment with the Developmental Paediatrician with me. I expected to hear nothing new. The Paediatrician asked Tobias some very clear questions, all of which he did not take in or respond to;
‘Look here Tobias’ as he pointed
‘What’s your name?’
Tobias blankly stared, showing no eye contact with the Doctor yet quite content in his world that day. The Doctor quietly asked me to come and sit down.
‘Your son has Autism’ he said, and I heard nothing more. I think I tried to engage with him, I’m not entirely sure. He handed me some papers and I could see his mouth moving but didn’t hear a thing. I looked down at the information sheet and saw ‘Autism is a lifelong disorder’.
The type of shock experienced by a diagnosis like that is hard to describe. It reminds me of a cold headache, where you swallow a large mouthful of really cold ice cream and your brain freezes.
You can’t speak and can only shake your head waiting for it to pass. Your whole body is chilled and frozen for those seconds. Hearing the autism diagnosis was like that… but it didn’t go away.
My body is freezing… cold… blank… shaking my head
I remember biting my lip hard, holding my breath and trying not to let the tears fall in front of this man I didn’t know, who had just broken my world. The cold headache had obliterated everything I knew of my child and the tears dripped from my chin.
I walked out holding Tobias, hoping the secretary didn’t see my distress and blindly into the car park with Mum following. She grabbed me and I sobbed into her, both of us clinging onto Tobias. The cold freeze continued and I was silent. I stumbled to the car. Mum took Tobias from me and buckled him into his car seat.
The only way I could work out how to deal with the ‘freeze’ after that day was to focus on an action. I knew nothing of my current world but could focus on what was ahead.
I had worked in the Disability Sector with adults with multiple disabilities and I knew exactly what autism could look like. I knew the potential difficulties with communication, the lack of intimate relationships in severe cases, the smearing, the indignity really.
I read that the best support available was Behavioural Therapy and I went to an assessment session with the closest organisation I could find. I didn’t contemplate the obstacles. I’m a determined person and I simply didn’t care.
My mother, father, partner and I all trained as therapists and his program began when he was two and a half years old. My second son Judah had just been born and we were doing 15 hours of one on one therapy a week. We were all exhausted but his gains were enormous.
In many ways it was quite an isolating experience. There was little time for play dates with children we met through other activities… in fact other than extended family there were few other children.
Our lives operated around the start and finish of shifts, rostering, fortnightly team meetings, diverting repetitive behaviours, doctor’s appointments, and consistency in all communication with Tobias.
Our house was filled with a stream of people coming and going and the bills piled up as therapy hit $1000 a week. Most people could simply not relate to this experience.
Most often people would empathise and really listen to what was going on. They walked beside us in the experience which was all I wanted. Other times I would be met with a blank stare and see the pity coming;
‘God has chosen you for this’
‘You must be a saint’
Blah blah blah
In response I just wanted to scream and prove them wrong. I didn’t want this for my children! I didn’t want my entire day to revolve around avoiding every day sounds like hairdryers, coffee grinders, vacuums and lawn mowers. I just wanted to be a ‘normal’ mum hanging out with other new mums. Quite frankly, it was really shit.
It was challenging and exhausting but I had never before felt such purpose. I felt a drive and determination to give Tobias the best possible chance. There was no time for self pity. We had up until the age of 5, the critical brain development phase to cover as much ground as possible.
Not long after Tobias’s first diagnosis, he was given his primary diagnosis of Williams Syndrome. This curve ball presented a whole different focus and set of challenges.
People with this diagnosis are described as having a ‘cocktail party personality’ where they will talk to anyone… and I mean anyone. Going to parks were a particular challenge. He would join every party in sight, hug random strangers and even ask to be picked up. At the same time, I have never met so many people in my life!
Our first Williams Syndrome annual picnic was an enlightening experience. I was welcomed from the moment I arrived. There was no hesitation about being approached or shyness in conversation. In fact, when it came time for speeches, people had to line up to take turns. It was refreshing and disarming.
When Tobias turned 5 we were attending interviews for mainstream schooling and it became obvious that he simply wasn’t going to fit… yet.
His obsessions with spinning things had continued from the age of 1 and no amount of diverting had resolved it. The pleasure he gained from watching whirly birds on houses or fans was just too strong. This posed safety issues as he would take off to stare at these things whenever they were nearby, regardless of what any teacher said.
Toward the end of the year, Tobias was offered a spot in a private, autism specific school. I was incredibly relieved but sad at the same time. I knew I didn’t need to worry for his safety and yet my dreams for Tobias were starting to seem just that.
Taking him to that school on his first day was such a confronting experience. All these children were doing unusual things; flapping, jumping and repeating things. Some weren’t speaking at all and here was my precious child happily amongst them.
There were all sorts of outdoor therapy equipment like trampolines and swings and every door and gate was locked. I had spent over three years trying to support Tobias to fit in to a ‘typical’ environment. I didn’t want to leave him that morning.
My sister had taken my niece to school and was sad about leaving her. The difference was she was doing all the things everyone else was doing. My sister was sad she was growing up. I was grieving that he wasn’t ready for life yet.
They call this experience ‘Living Grief’. Most other types of grief come after an event; the death of a relationship, or person, or end of a job. It has happened, it is over. Having a child with unique challenges is different. Every day you face the reality that they are struggling. Every day you see the differences between other children and your own. Every single day is a challenge for you and them.
This is not to say that it has been all sadness. That’s definitely not the case. There has been so much depth and a lot of beauty, too much beauty really.
I remember Mum calling me one day crying and it took me a while to work out that Tobias had walked three steps during a therapy session! Three steps at 2 1/2 when coaxed with chocolate!
The time he started using full words, then two word sentences, then three word sentences. The time he was able to climb a ladder and jump on a trampoline independently. The day he chose his first library book called ‘I love chocolate’. All of these skills were hard won.
They were broken into minuscule steps and he worked every step of the way for years, trying his hardest to bludge where possible, his funny little personality shining through.
In many ways I feel lucky, I really do. We have this completely accepting and supportive family, an extended network of Williams Syndrome families who understand the challenges, my second son Judah learning at a speed which amazes me, access to doctors who are the best in the world at what they do, as much food as I need, and a roof over my head.
There is still sadness in me but overwhelmingly I see this beautiful, individual, social, naughty, tantruming, nose picking, affectionate little boy and I adore him for who he is.
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