In 1990 we were living in a little house in the bush whilst ours was in the final stages of being built. Lee and I and our newborn baby (Richard) were all sleeping in the living area.
Early one summer’s morning, as the rising sun was peeking through the east side windows to light up Richard’s bassinet, he popped his head up and bathed us with the most beautiful of baby smiles. We put him into our bed with us, smiling, laughing and cuddling us as we passed him around. It was a time of total bliss; we three afloat in our happy little world.
But it didn’t last. By the time he was 6 months old, Richard’s behaviour was showing some concerning signs. He had started to do odd things, like not making any noise at all during a two-hour car trip to a nearby town, despite having been awake the whole way.
A visiting child health nurse bounced a basketball next to him as he sat on our wooden floor.
He didn’t even flinch.
“You better get his hearing tested,” she said.
I had trained as an Audiologist. I knew that he wasn’t deaf.
For the first time I was gripped by the chill of trouble looming, a growing sense of dread. No, it all wasn’t going to be OK, something we were often told when we tried to confess our fears to family and friends.
Richard’s behaviour continued to become more and more atypical as he missed most of his social developmental milestones. We had a group of friends with babies born at the same time and it became difficult to socialise even with this group. The inevitable comparisons were disturbing.
By the time he was about two and a half a psychologist who specialised in autism spectrum disorders suspected that he was affected. When she made her formal diagnosis a year later, it was obvious that he was taking a different path. By then, were looking for her diagnosis to end our uncertainty and help us get started.
Despite that, I was devastated when Lee phoned me at work with the psychologist’s verdict. I had seen children with autism in clinics when I was in training. I knew it was demanding, I knew it was permanent, I knew that it would forever affect our whole family.
The phone was in the corner of a busy staff room. I was in a daze as I hung it up, my dreams of our families’ future finally shredded. All the people I could see around me were chatting, laughing and talking shop, busily going on with their lives. But chance had suddenly changed mine forever and there was no way back. I felt I had crossed an event horizon. Life would go on around me now, and we would have to struggle to find a way through.
I took a long, cold, lonely and introspective walk home.
Although the baby boy I thought I knew had gone, the Richard that I actually knew was on his way home in the car. And when he arrived, he started running around with his little brother, doing all the small things they usually did. I could chase them, catch them, pick them up, have a cuddle and a wrestle, roll them up in the doona, tell them jokes and stories and do all the silly things that we had been doing the night before.
Everything had changed but nothing really had. We could keep on carving out our life as a family from the inside out. Richard was still our baby boy and, in his own way, he loved us as much as we loved him. As with all things, he was just going to do it differently.
Something that did change when Richard was born, is what could be loosely called our own hopes and dreams.
Early on, in a parent support group that we attended somebody told us that caring for Richard would involve many long and lonely hours which would drain away most of our time. We would find out who our friends really were and we would likely lose most of them.
They were right.
Friends drift away not because they are bad people but because we can’t go out with them, especially as a couple, nor reliably participate in everyday social activities. In the early days we would try to explain why dinner even at child friendly venues wouldn’t work because Richard simply wouldn’t stay in the room or else would push children down the slide or sit at the top and block the entrance. A crowd would gather, a fuss would ensure. We wouldn’t be sitting down to relax and chat.
Such experiences are so foreign even empathetic people find it difficult to offer any response.
The support group also encouraged us to focus on the days in front of us, to not exhaust ourselves by projecting too far into the future. I always come back to this idea when things get overwhelming.
Now 36, Richard still has many challenging behaviours. He probably doesn’t know that he is disabled and even if he does, he doesn’t care.
He presents as a 107Kg man with level 3 or “profound” Autism, who struggles with the basics of social communication. While parts of Richard’s mind seem totally alien, there are also parts than feel very familiar if you take the time to get to know him
He can speak but he doesn’t and so cannot use normal language to communicate his needs or feelings. He gets that done by repeating lines from songs or videos that address the issue at hand. “And then they were off!”, is an oft repeated line from a long ago Postman Pat video which means “stop mucking around parents, it’s time to go!”
Richard isn’t interested in reading social cues and is indifferent to rules and expected behaviours in differing social situations. But he loves going to his activity groups to hang out with his friends.
He rarely plays with other people but he loves to play with dogs.
When under pressure, sick, tired or unhappy he will start repeating words or phrases before elevating into a hand flapping jumping and screaming fit. He can read and write when prompted and so, to reduce the chance of elevated behaviour, we use illustrated social stories that his mother writes to help him cope with any new or unexpected activities like a visit to the zoo or an appointment at the doctors.
Last year Richard was hospitalised for two weeks. He had become so dehydrated that his saliva began to backflow into his salivary glands which quickly became infected. The infection then spread into his mouth and throat. Despite the pain he never complained. we weren’t aware that he was ill until he finally stopped eating as his neck swelled up.
One of the registrars in the ICU ward, who came to examine him daily, was initially quite brusque in his treatment of Richard and struggled to get him to open his mouth or allow examination.
“Wonderful bedside manner,” quipped the attending ICU nurse when he had left.
But as Richard’s stay in hospital dragged on, the registrar got to know some of his little quirks and became quite fond of him as he relaxed into treating the person rather than the disease. His goodbye at our discharge came with a high five and a “maybe see you around eh Richard, but maybe not here.”
All of this shows that anyone, even the disabled, can be made to feel more human with just one ingredient: you.
Richard has developed his own life and we have always tried to help him do that. Without being too dramatic, he can live this life because we give up a lot of ours. We accept this. What we find harder to accept is having to explain to government agencies and even some disability providers how fragile the line is between coping and disaster. Our understanding of this fragility leaves us in a state of constant vigilance that is stressful and lonely because it can’t be seen by most.
Discussion about the NDIS increasingly centres around a budget line, it would do us well to remember what his registrar realised. A compassionate and caring society will also be a happier and more inclusive one.