“People only need three things in life to be happy. Everyone needs someone to love. Everyone needs something to do. Everyone needs something to hope for.  And there’s certainly a lot of love here in this room tonight.”

These words, spoken by the Ashwood School principal Mrs Helen Hatherly, were heavy with meaning for all her listeners. Last night, 22 young men and 20 young women – Dancing Wombat among them – were officially “presented” to the Ashwood School community of parents, friends and teachers at a formal Presentation Ball.

It was a beautiful evening. The girls were stunning in their white gowns, and the boys looked amazing in their black tails and shimmering waistcoats. I know, I know. You don’t – at least, you shouldn’t – judge a book by its cover. Yet how true it is that “Clothes make the the man”. Out of their school uniforms and dressed to the nines, these students seemed to stand a little taller, hold their heads a little higher, smile a little more confidently. All in all, they presented themselves proudly as the young adults they are becoming.

Yes, it was a debutante ball by another name. And, yes, in a way, they’re a bit old fashioned. We no longer “present” our children to society as people of a certain social strata did in bygone centuries, as a way of launching their daughters onto the marriage market. And yet as a marker of “coming of age” for these students, and as an occasion to celebrate their achievements in a special setting, with a special dance, special clothes and extremely special people, well – I can only say that it was special.


Everyone needs someone to love

The principal spoke of the love in the room. There certainly was a lot of love. It was palpable. Friends, carers, families – all who could possibly be there to celebrate their child’s achievements were there, glowing in the warmth of the collective tenderness, pride and delight in the moment. Dancing Wombat’s three brothers were beautifully behaved for the whole night, removing a significant worry from our shoulders! (I think Littlest Wombat caught up on about three week’s worth of reading! Thank you, Andy Griffiths!)

Yet the evening was tinged with poignancy too. For many of us, our children will never have the opportunity to celebrate a significant life event (in the commonly accepted sense) like a university or TAFE graduation, marriage, the birth of a child, a promotion in a new job. As I explained to Littlest Wombat when he queried whether he had to come, for our daughter, this would be a really special night for her – almost as special as getting married (to put it in terms that a 9 year-old could relate to). And so yes, he had to come to support his sister. Even if this was with book in hand.

For our special needs kids, we know that (in most cases) love is the one thing they can rely on. But as our children get older, and post-school options beckon, the next part of what we need for happiness comes into play.


Everyone needs something to do

As the parent of a special needs child, the end of school can loom as an agonising prospect. School is a cocoon. It provides structure, diversity of experiences, a peer group, extra-curricular activities, predictability, safety. Students move from one year to the next, knowing the path that lies ahead – at least, until the end of Year 12. From there, though, it all changes.

As with their mainstream peers, the “post school options” depend on the student’s capabilities. However, unlike their mainstream peers, there are fewer choices available.

I’ll never get over being told by a senior educator (in the specialist sector, mind you) that because our Dancing Wombat daughter, at 16, was “successful” at colouring in, they weren’t going to stop her colouring in, because it gave her “self-esteem”. Well, she also gets self-esteem from other things.

Obviously, our kids’ capabilities vary more widely than those of mainstream students. Some are more able to study or work in a “mainstream” environment than others (assuming that they want to, of course). But my fear, and that of some of my friends, is that as our kids get older, they will have access to fewer and fewer opportunities, and be confined in an ever-narrowing social environment.

I don’t know enough about the NDIS (Australia’s federal government-auspiced National Disability Insurance Scheme) to know how it will help my daughter – if at all. But I am adamant that I don’t want her stuffing conference bags for the rest of her life. Or pasting labels on coffee jars, as she did at one work experience visit last year.  I don’t want to be told by others (and especially not by those in the disability sector) that we should just be thankful our child has a job. It has happened.Kathy getting into hummer 120516

Of course we would be thankful.

But why should our children not be allowed to hope for something better? The third element of “happiness”, as Ashwood’s principal described it.

Just like anyone else, our children want to be challenged and stretched. This might be done differently from how it is for others, but so what?

Like anyone else, why would someone with special needs necessarily want, or expect to be in the same job all their working life?

Consider also, that in the disability sector, this potentially means working with the same people for years on end. As is the case for anyone with a more limited skill set or level of education, there just aren’t the same opportunities for someone with special needs to move from one job to another.

Try and imagine what it would be like if your workplace and social group didn’t change from the time you left school right up to into your middle years and even into older age? How on earth could you possibly develop your full potential as a person, develop your skills… hold onto your hopes and dreams?

Yes, everyone needs things to do, but let’s try and make those things, that employment, those activities meaningful, and not just timefillers.

Just as we have moved beyond institutionalising people with special needs (admittedly, not always as well as it should have been done), surely we have moved beyond the mentality of the sheltered workshop. Even for those with limited capability, I dare to think that there are jobs available where they can be more integrated into the community around them, having chances to meet different people, make wider friendships, have different experiences and even learn new skills over the course of their lives.

Recently, I enquired about Dancing Wombat volunteering at our local library. The librarian was supportive. Unfortunately, the Council’s insurance policy meant no volunteers.

I’ll never get over being told by a senior educator (in the specialist sector, mind you) that because our Dancing Wombat daughter, at 16, was “successful” at colouring in, they weren’t going to stop her colouring in, because it gave her “self-esteem”. Well, she also gets self-esteem from other things. I think responsibility rests on us all – especially those in the disability sector – to encourage and draw out those other skills. At 16, Dancing Wombat has other strengths that I think are more appropriate to be developing, which would also enhance her self esteem and give her more valuable life skills.

And so, what will our children do?

The more capable, articulate and more sociable will have better luck than those like Dancing Wombat, who hide their abilities and make communication into a series of riddles to be answered. Yet surely, she has the same right to be developed and extended as others.

Ball band 120516

Then there are those with far greater needs than Dancing Wombat, or even higher functioning special needs children, like my two Aspie Wombats. These children, who already have to deal with so much, leave school and find themselves at the mercy of “the system.” At risk of being trapped in a cycle of only ever meeting with, working with, interacting primarily within the confines of the special needs community.  Having already lost one of life’s lotteries (and this doesn’t just happen at birth), those with special needs continue to miss out.

You can run all sorts of emotional arguments. Arguments based on rights and ethics. And yes, questions of access and provision for those who differ from the mainstream will always be an issue. But if you want to be a bean counter about it, ignoring or inadequately addressing this issue imposes a high cost, both personally and socially.

So, we need to work on the “something to do”.


Everyone needs something to hope for

Before the Presentation Ball, the Ashwood students had to write about what they wanted to do when they left school. Dancing Wombat wants to volunteer at the local library, get an interesting job and travel. These are the “hopes” that the principal talked about.

All the students had hopes. Some of them were probably wildly unrealistic. Others were more achievable. But without hope, there is nothing to strive for.

Recently, I enquired about Dancing Wombat volunteering at our local library. The librarian was supportive, and thought people with autism would be well suited to working in libraries. Unfortunately though, the Council’s insurance policy meant that they couldn’t take on volunteers.

Oh. I wasn’t expecting that.

It’s not like working in a library is a high risk activity, but insurance these days… I made a mental note to take this up with the Council at some stage in my spare time when I’m not composing blogs. Our kids need advocates more than most. She couldn’t do this for herself.

Artist - Brett Taylor

Artist – Brett Taylor

What about our daughter’s (and many others’) hope for an interesting job? It’s hard enough for young people these days. Imagine, if you can then, being a young person with a disability. Technology is a blessing and a curse. It robs Peter to pay Paul, creating opportunities in new fields while taking away others. Not everyone can be a computer engineer or a games designer. Or a barista, for that matter. We’re told that the jobs of the future haven’t been created yet, but not everyone is suited to work in aged care, hospitality or technology. I need to start researching the jobs our kids can do that still exist, that haven’t been taken over by a robot or a computer, and that are a bit more meaningful than pasting labels onto coffee jars.

Sometimes I look into the future and see no hope there. I worry that I will be 90, looking after a 60 year-old special needs child. Or worse, that I won’t be 90 and someone else won’t be looking after my child properly. It’s a bleak prospect.

So I have to hope, and encourage Dancing Wombat in her hopes. In the meantime, we all have the memory of this beautiful ball to sustain us in the tough times, and add to our encouragement I the good times.

We must hold onto believing that our kids CAN achieve, if only enough people believe they can, and are prepared to put in the time, patience, effort and imagination into helping them. We’re not educating rocket scientists here, but we are producing beautiful young men and women who are capable of making a contribution to their community that is both worthwhile for others AND for them.

The big question for all of us is, are we willing to make this happen?

Our caterpillars are on the cusp of emerging from the cocoon of school and stretching their butterfly wings. I hope that we can all help create the environment to help them fly.