It's been a significant year, the biggest milestone being that Tobias finished the intensive part of his ABA program. He began the program as a 2 1/2 year old, with very few words, little eye contact and still crawling. I began as a new Mum with very little understanding of a child's development or the challenges for families with a member with a disability. His diagnosis at that time was Williams Syndrome, Autism and a Global Developmental delay. Fortunately these diagnosis's came gradually as while I knew my perfect boy was finding learning hard, being labeled is a very different story.
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 and don't like to ask for support or seem needy, but she had offered to come. It was a true blessing that she did. 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?'
I can't remember the others but there were only a handful and it took less than 10 minutes. Tobias blankly stared, showing no eye contact with the Doctor yet quite content in his world that day. I adored him. He was still crawling and would lie on his back looking at things at close range. 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 life long disorder'.
The type of shock and grief 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 icecream 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
Please pass
Please pass
Please
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.
'He knows something isn't right' she said but he just looked forward staring at the back of the car seat. I hoped in my heart she was right.
'Do you want me to call Chris?'
I nodded.
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.
Mum had an invaluable book called 'The Autism Handbook' and I scoured it for all the treatment options. I had worked in the Disability Sector with adults with multiple disabilities and I knew exactly what Autism could look like. I knew the eccolailia, the aggressive behaviours, the lack of intimate relationships in severe cases, the smearing, the indignity really. Yep I knew it and that wasn't going to happen to my son.
I read that the best therapy available was ABA and I went to an assessment session with the closest organisation I could find. I heard that in a recent study of children who had been through ABA almost 50% of them had 'recovered'. That was exactly what he was going to do. I didn't contemplate the obstacles. I'm a determined person and I simply didn't care. It was going to happen.
I didn't anticipate the challenges that came when Judah was born which was lucky. Tobias's program had already started and he was doing at least 15 hours of one on one therapy a week. We were all exhausted but his gains were enormous. Mum and I relished the clinic sessions we attended every two weeks with the therapy team and talked for ages after each one as our knowledge of child development expanded. I knew Tobias was going to be ok.
Judah was born at the start of the program, many may know, with congenital heart disease and needed surgery fairly quickly it turned out. Childhood heart disease is a common thing but not one we had planned for in the 1 year of maternity leave/ABA program scenario. Judah was 5 months old when we found ourselves bedded down in public hospital for a month, anticipating surgery as his heart failed.
I remember a down to earth friend Trish and her daughter Annika coming in to see us with some beautiful gifts one night in hospital as Judah's monitors beeped away. Annika had nearly died after birth and I knew Trish had stood in our shoes, anticipating saying goodbye to her child. I told her about Tobias and what we were now faced with. Tobias's program had to continue for at least three years, but I wouldn't be able to return to work with such a sick child.
"Why don't you fundraise? We'll contribute" she suggested enthusiastically. She had a work friend who had done that for her child and it had been very successful. Whilst my immediate reaction was to thank her for her idea whilst thinking that there was no way on God's earth I would ask others for money, the idea remained.
After Judah's surgery I launched a fundraising program and Tobias's therapy continued. It truly was a humbling experience saying 'Yep we are really struggling. My child really needs this but we need help'. Many came to our aid in response.
Family support was enormous. Mum and Dad both started as therapists with Mum continuing until just this year. I often wonder what this demand cost them both emotionally. It is something I can never repay and will be forever grateful. Being a family member and therapist at the same time was too taxing for me and I pulled out at around 18 months. It is the reason Mum and Tobias have such a close and intimate bond though, there's no doubt about that.
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, doctors 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 to that 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 mechanicals sounds like hairdryers, coffee grinders, lawn mowers, blowers etc. Quite frankly, it was really shit.
In reality I completely adored both Tobias and Judah and didn't have time for self pity. We had up until the age of 5, the critical brain development phase to cover as much ground as possible. 'Recovery' was always in the forefront of my mind.
The other response I frequently received was 'Doesn't the government contribute to therapy?' Well yes it does. There is currently a $16 000 maximum contribution for therapy but when you are paying $1000 a week for years on end, it doesn't go very far. Ultimately families are meant to carry the lifetime cost and sell their homes or cars to do it.
I realise too how condescending and first world that sounds. I have a dear friend in Burundi who would be amazed that we have jobs and houses and cars we can sell. We are the lucky country right? With 'boundless plains to share'?
That is another blog in its own right.
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, air conditioners 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.
There was a lot of sadness in the whole school process too. I was shocked by the comments I received like and I quote 'The priority of taking children is in area children, out of area children, children with disabilities. We suggest you go elsewhere. You can still come for an interview though'. Did she really think I would consider bringing my child into that environment?
I applied for the local Catholic school and received a different response. They didn't think they could meet his needs and wouldn't allow me to pay for a therapist to support him because it had caused issues in the past. I cried humiliatingly through that appointment as well. I had this beautiful, engaging child and it didn't really seem that he was welcome anywhere.
I understand the issues involved for schools, really. I understand the funding constraints, the lack of staffing, the pressures on teachers but quite frankly, it just wasn't good enough. Williams Syndrome is around 1 in 10 000 births but at 1 in 100 births with Autism, it's hardly a rare disorder. I don't blame the schools for that. I blame the lack of funding for them to provide what is needed for these little, individual, precious people to develop to a shred of their potential.
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 dream of 'recovery' was 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 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. The outcome doesn't really change from that point. 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, Judah with a beautifully healthy heart and 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.
You know, the focus of 'recovery' for Tobias is no longer the priority. There is still sadness in me but overwhelmingly I see this beautiful, individual, naughty, tantruming, nose picking, affectionate little boy and I adore him for who he is.
