After the ball is over

After the ball is over
After the break of dawn
After the dancer’s leaving
After the stars are gone
Many a heart is aching
If you could read them all…

Since my daughter had her Presentation Ball, two years have already flown past. I’ve been reflecting on her first steps into the morning of her adult life.

The Presentation Ball was a beautiful coming-of-age event for a special group of young men and women at my daughter’s school, many of whom may never again experience anything like it. This isn’t being negative or pessimistic. It’s being realistic about the life choices and opportunities available to people with special needs, especially intellectual disabilities.

Many of the young men and women at that ball will never experience a significant life event like a tertiary graduation, marriage or the birth of a child. Many will never hold a driver’s licence. Many will never find employment. The Presentation Ball was an opportunity for them to celebrate their achievements with family and friends, cheered over the threshold of adulthood with the shared love, pride and hope of everyone in the room.

Everyone needs someone to love, something to do and something to hope for

Two years on, my daughter has finished school. She has left behind the safety of twelve years of educational structure and stands on the blank, unshaped canvas of her future.

We, her parents, must help her hold the brushes, choose the paints and guide the strokes when she can’t do it herself, while trying to empower her as much as possible to make her own choices and choose her own direction. It is an awesome responsibility.

Principal Helen Hatherly’s words still ring as true now as they did back then: “Everyone needs someone to love. Everyone needs something to do. Everyone needs something to hope for.”

So, how is she going, with the loving, the doing and the hoping?

Someone to love

We, her parents and brothers, will always be there for her. And she has an extended, supportive family who will always love and support her. However, with her added cognitive challenges and personality quirks, having “someone to love” – whether friend or someone closer – will always be challenging for her. This is because communication and socialisation aren’t always strengths for those with autism. They’re certainly not my daughter’s strong points.

School comes with a peer group. There are usually at least a couple of people whom you can get on with. Someone to share a laugh with and sit with at lunchtime. My daughter has largely left this peer group behind.

It’s hard to say whether she had any close friends. There were girls whose company she enjoyed, and a couple she got on with well. But she’s not one for phoning or texting and she never seemed to have a “bestie”.

We’d dearly love her to have one good friend. As social beings, we exist and develop in relation to others around us, our community. Our general mental and physical well-being depend on it. And it’s so important for the sheer enjoyment of life.

We’ve just started to trial sending her to the movies with a movie buddy. This is a lovely young lady my daughter’s age, who can act as companion and a bit of a peer mentor. That will be way cooler than going with her mum (!) and provide her with an opportunity to socialise like any other young adult.

Many post-school options we investigated had people of all ages mixed together – reflective of our broader social and workplace community. This is not a bad thing. But it does make it more challenging for my daughter to make friends her own age – something most of us take for granted. Those who go from school straight into post-school education or apprenticeships often have a large group of people their own age around them, part of a broader influx of “newbies”. The same volume doesn’t exist for graduates of the specialist system, which isolates them. Where “mainstream” students move on to a variety of employment and social options, special needs people may stay with the same program for years, with limited work and social opportunities to meet new faces. That’s not counting the fact that making social connections can be a difficult experience for anyone.

We’ve been fortunate in finding a suitable program that takes students for their first three years post-school. Burke and Beyond – Next Step focuses on teaching students independent living skills, something that was begun in the last two years of my daughter’s schooling. Some of her classmates from school are in this program, and she gets to meet other young people around her age.

Something to do

She’s certainly “doing” lots. Besides her 9 to 3 program each weekday, there’s the after hours swimming lesson, social skills group, cooking class, Saturday afternoon travel training for the next few weeks and Sunday morning gym session. Not to mention countless walks around the block to “get her steps up” to the desired 12,000.

In a list that’s largely geared to safety skills and independent living, you’d be forgiven for thinking that my daughter has had little choice in it. In fact, she chose the travel training, social skills and cooking, while we encouraged it. They’re with kids she knows and a teacher she loves. Swimming is non-negotiable. Gym, likewise. An underlying endocrine condition predisposes my girl to all sorts of nasty problems if she doesn’t stay fit and healthy. Her gym program, Fitskills, is run under the auspices of LaTrobe University and matches her with a physiotherapy student. It’s one-on-one, and tailored to her needs and abilities.

She has expressed – and I have encouraged – an interest in volunteering at our local Salvo’s store. I just have to follow it up. Half an hour on Saturday morning tidying the bookshelves maybe? But I’ll probably need to make personal contact, rather than just apply on-line. This is why things fall to the side. I don’t always find the time…

Something to hope for

Where do I start? This is hard. We need to try and articulate hopes for her, where she does not or cannot. It is hard, sometimes impossible, to divorce our hopes for her from those she has for herself.

However, my daughter has expressed the hope that she can travel, have a job at a library, and a cafe; and do some volunteering at an op shop. I’m sure she has many more unexpressed, even unformed, hopes. And I know she hopes for eyes that will see better.

Then there are the many hopes that I have for her, from the mundane to the extraordinary. I hope that she can get dressed faster. I hope that she stays safe. I hope that she can make some friends. I hope that she stays healthy. I hope that we can fix her vision. I hope that she can find a job. I hope…

As we strike out into the relatively unchartered territory of the NDIS, I hope for a more inclusive society, one that creates opportunities for our special needs brothers and sisters, sons and daughters to participate. Yet as many routine jobs disappear from our economy, it seems that options for people like my daughter are diminishing rapidly.

Bring back the internal mail delivery person, I say! My daughter would be great at that. It would keep her involved, physically and mentally active, and making a meaningful contribution to her life and the lives of those around her. She’d also be participating in the broader community – not just in the confined “special needs” space.

Do I worry? Sure – heaps! Is it hard? Of course. And there are good reasons to be anxious. But if worries had overruled hopes, she wouldn’t be doing half the things she is. Even though my heart was in my mouth several weeks ago when she hadn’t turned up at her day program and wasn’t answering her phone…then we thought it was stolen…then we thought she was missing…That’s a story for another day.

The Presentation Ball might have gone, but the love lingers, the hope is ever-present and there’s plenty to do. Best get on with it.

Until next time, Happy Wombatting!