We lived in New Zealand for 11 years, before returning to Australia in 1997. I had no idea what kind of work I preferred. After several months of indecision, I received an offer. There was a vacancy for a Disability Support Worker. My previous experience in assisting people with a disability gave me belief that I could do the work.
There was a young man with Down Syndrome living in a holiday cottage, a short distance from the beach. It was a quiet location, attractive to people of retirement age. The young man benefited from one-on-one support. His behavioural issues precluded him from living with anyone else.
The young man was prone to occasional outbursts of rage, posing a threat to himself, his physical surrounds, and anyone else nearby. Although he had received medical supervision and support there was little understanding of the triggers that prompted such behaviour. The phrase used by professionals was ‘challenging behaviours’ although this was later revised to ‘behaviours of concern.’
The medical elite spend a great deal of time refining and reimagining language, getting the right balance between respect for the individual and an accurate description of the relevant issues. If the goal is to educate and to remove stigma, then I am supportive, but this is not always the outcome.
Sadly, we live in a society where language is under constant revue and is often used as a weapon to pull down, to polarise, and to condemn.
The young man took medication for anxiety and depression and to address his anger. Consequently, he was often drowsy and therefore, difficult to motivate. As his carers, we set modest goals – a daily shower, a successful bowel motion, plenty of fluids, and a short stroll outside.
The young man spent much of his time in his bedroom, dozing, or sitting on his bed. It was his space. He seemed on edge if taken out of this environment. We all need a place to call home, no matter how small.
A sheet of Perspex covered the main window in his bedroom. This was a safety precaution to ensure he did not put his head or his fist through the glass. It was functional not aesthetic.
I soon realised that if I were to have a positive influence on this young man’s life, I would have to build trust and that takes time.
On one of my early sleepovers, I woke up in the middle of the night. The young man was standing in the doorway of my bedroom, his silhouette clear to see. I asked him if he wanted a drink. This did not seem to be a concern. Perhaps he needed assurance and was checking to see that I was there.
Society is not great on trust. People’s lives are dominated by self interest and self advancement. We have become overprotective, suggesting our levels of trust are diminishing.
I spent time with the young man in his bedroom listening to music, reading picture books, and flicking through family photo albums. I observed that life had been good, the smiley faces suggesting happier times. Talk centred on the people, and places, and pets.
The young man rarely spoke, but his body language communicated his level of interest. I discovered he had a stutter which was an added complication. If he did speak, it was usually one or two words, delivered in a husky whisper. We noted that whenever Easter approached, he would state his preference. Not hot cross buns, not bunnies, but ‘Easter eggs.’
It is important to remember the past, to engage with it, to savour it. Celebrating the past can give us the courage to move forward, to embrace the future.
Expanding the young man’s world was dependent on trust. Our task was to win that trust.
One of the challenges we faced was to facilitate the young man’s engagement with the outside world. We had observed that he was aware of his environment and found the unexpected amusing, particularly loud bangs.
Given his reticence to go outside, we contemplated how to bring the outside world in, or at least, to encourage him to look out.
The front yard had a selection of Australian natives – Banksias, Grevilleas and Callistemons – which afforded him a measure of privacy. People walking along the footpath could not see into his bedroom. When the trees and shrubs were in flower, they attracted the nectar loving birds, honeyeaters, silvereyes and rainbow lorikeets.
We decided to place a bird feeder on top of an old stump near his window. We filled it with wild bird seed mix. It was not long before the seed eating birds arrived, sampling what was on offer. The young man noticed the increased activity and seemed to welcome the distraction. However, he was more animated when a bird accidentally flew into his bedroom window.
In her book, The Nature Fix, Florence Williams refers to the psychologist and architect, Roger Ulrich, who had been exploring the health consequences of ‘a room with a view.’ He found that patients who were assigned to rooms with a window view of trees as opposed to those who looked out onto a brick wall needed fewer postoperative days in the hospital, required less pain medication and were described in nurses’ notes as having better attitudes.
I am sure the young man appreciated his ‘nature view.’ Being present to the trees and shrubs, and the birds that frequented them, enriched his life. Nature reminds us that we are not alone. It asks us to sit quietly and observe, to focus on something other than ourselves. Nature slows our heart rate and communicates peace. Nature speaks our language, providing insight and inspiration.
As I sat with the young man, I came to appreciate his inner struggles, the unresolved grief, and the undiagnosed psychosis. Sometimes I could sense his pain and frustration and a longing.
Life was not all negative. I am sure he welcomed the quiet, the one-on-one support, the visits from family and friends, and the lack of demands.
I endeavoured to put into words what he was thinking, what he was feeling. Hence the poem,
A Window to Another World
I sit on my bed thinking What the day ahead might bring The walls are bare, not a picture To awaken my spirit within. My room boasts an expansive window A world enclosed within I can explore the changing pictures Or turn away again. A spider’s web sparkles with morning dew Patterns of beauty, intricate, and rare. A web of destruction for the unsuspecting, “Be aware! Take care!” I declare. Colourful galahs perch on the power lines Two plus one I can see The pair help each other preening The solitary one seems dejected to me. The wind chime is silent and sombre The sea breeze is all but gone The calm may be reassuring But without the wind there is no song. A gum tree stands tall and serene The eucalypt leaves alive in the morning sun The bark is shed like discarded skin And litters the yard where the children run. A small aircraft flies overhead It carries a message for all to see “GIANT BOOK EXPO” in bold, black capitals But what if you cannot read? Angry storm clouds fill the vast sky The smell of rain is in the air The lightning flashes, a jagged scar, And the rumble of thunder sounds near. A new moon hangs in the darkened sky Stars gather round to pay homage Times and seasons come round again Yesterday’s tomorrow adorns history’s page. I hear the sound of children Wafting on the summer breeze Light-hearted squeals of laughter Happiness, I am told, is free. Raindrops cling to my window Distorting the images of autumn My mind is free to ponder The palette of colour for this season. Roses cling to the neighbour’s fence Their fragrance filling my room I am reminded of my faithful mother Whose love is a sweet perfume. My bedroom is a place of slumber Where hopes and dreams inspire Thoughts of a new tomorrow Where I am free to fly higher and higher.