Hi. I was wondering if I could ask you a question. Well, actually, I’d like to ask you a really big favour, and I hope I find the right words…
So began my bumbling enquiry to a local café owner about some regular work experience for my daughter – a lumpy melange of pleading, hopefulness, and uncertainty.
Becoming the mouse that roars
At school, I was a quiet student. The stereotypical “good” girl, keeping her head down and her tail up, too timid to say “Boo” to the proverbial goose.
Parenting a special needs child has compelled me to find a voice I never thought I’d have. I’ve had to advocate for her, question for her, search for her and act as her voice, from early intervention through school, in a myriad of health settings and now in her post-school life. Barely without realising it, over this time, boldness has been overcoming my natural timidity. My squeak is developing into a roar, albeit not yet at full lioness volume!
Building the future
From the earliest days when we realised that our child had extra challenges, my thoughts would often turn to the future beyond the safety and predictability of school.
What would she do?
Where would she go?
Would her programs be as meaningful in practice as they were on paper?
Would she be encouraged to go the extra mile and supported to work in her “zone of proximal development”?
Or would she just face the rest of her life doing “fill-in” activities (which I label “babysitting” in my more cynical and negative moments)?
Meaningful programs don’t just fall into your lap. You need to do the research and check out the programs on the ground. You have to be proactive. You have to start (or continue) developing that “village” of support networks and support people, which will provide opportunities for socialisation, meaningful work and activities, fun and friendship.
My daughter wants to work, make friends and participate in the community. She’s on her way, already into her second year of a three-year post-school program, 9am to 3pm, 5 days a week. This is helping her to develop some of the skills she needs.
But my mind ceaselessly returns to “What next?”.
There are many programs and activities tailored for special needs young adults, but not all are suitable for her. Some things she’s tried since leaving school haven’t lived up to their promise.
While we all need “down” time, my autistic daughter needs it even more. She’s often physically and mentally spent at the end of her work day. However, her default “destress” position is hunched over her iPad, sometimes for hours on end. It’s broken only by my badgering her up and out for exercise, or to help around the house. Neither the hunching nor the activity-under-duress contributes to her independence. Neither is ultimately sustainable.
I want – need – to find a good balance of activities to help her occupy at least some of this spare time, a mix of skill development and sheer enjoyment. It’s harder than it sounds. Despite her desires to engage with the braoder community, my girl is very content in her own little world. It’s safe there, and few demands are made on her.
I keep on trying. But I’m coming to realise that with some things, people outside your immediate family circle might be better positioned to help. To draw your child into a broader community and help create their “village”.
The going is tough
The outlook for special needs people has always been tough. At least we’re gradually moving beyond the stigma that saw them institutionalised, or working in industries away from the community’s sight. Nevertheless, the journey between that and a truly positive outlook is still really difficult.
And then the inexorable march of technology is subsuming jobs in highly-structured environments. Considering the future of work is uncertain even for neurotypical adults without these additional challenges, well, it’s understandable that parents of neurodiverse children worry.
Listen to your gut feelings. Ask. The worst you can get is a “No.” And I bet, in our journeys as special needs parents, we’ve experienced worse than that.
Not everyone can work in aged care or be a barista, to use two examples frequently touted as career prospects for people losing production line work. And our kids need supportive and supported environments. The more they’re given opportunities to work in their ZPD, the more they’ll achieve. We still need real people working analog jobs in bricks-and-mortar facilities, interacting with carbon-based life forms – us! We need non-exploitative work opportunities in caring workplaces. These do exist. But beyond NDIS-related Google searches, where on earth do we start looking?
Fumbling your way towards the village
Recently, I had a brainwave. I was at a café near where my daughter goes during the week. The owner is cheerful and friendly, always kind and patient with my daughter. Wouldn’t it be great, I thought, if she could do some work here. I noticed that the café closed at 4, half an hour after my daughter’s program finishes. I looked around more closely. Perhaps she could help with packing up at the end of the day? Refill the serviette dispensers, wipe the tables, bring in chairs? Something little, but regular.
The more I considered the possibilities, the more I felt I needed to ask. I thought and prayed hard about it over the next two days. I find it extremely difficult asking people to do things for me, especially people whom I barely know. But I figured I had to channel my inner roar. The worst the owner could say was “No”.
When the hoped for but unexpected happens
Before I’d even finished my stuttering sentence, this wonderful lady said “Yes”! I explained some more, and she still said, “Yes – I’d love to help!”
Had the café counter not been between us, I would have hugged her. Without my realising it, a village door had opened and we’d been welcomed in.
My daughter has been doing “work experience” for nearly a month now. I meet her on Thursday afternoon and she leaves her program early. We share a drink and she gets a small cake for “after”. The café is quiet after 3, which helps her to ease into a new pattern. She takes over our dishes, then helps to bring in and stack the outside tables and chairs.
It’s an important learning experience for her that things can’t always be done her way. She’s already had one mini-meltdown when she wanted the chairs in one place when they needed to go in another.
But that’s part of the learning. Just like learning to ask the café owner – not me! – what to do next.
My daughter is very excited about her work experience. And I’ve met some lovely people along the way – the customers who look at her with compassion, are patient, and tell her “Well done”.
She needs this village. I need this village – these people around us who hold us up, nurture us and sustain us in myriad small ways.
Villages are growing everywhere – you too can be a villager
Some truly inspirational people have set up businesses to employ their special needs siblings or children, and other special needs people in the process. Floristry is one; barista service is another, as is outdoor maintenance.
Please support these businesses wherever and whenever you’re able. They provide the products and services you and your own ‘villages’ seek and use in your everyday life and transactions.
Not only do they create meaningful work and a more financially secure future for our family members, they also bring them out into the community, where they should be. They gain confidence, and others learn about their skills, strengths and support needs.
Sure, not everyone can set up a business. But we can all support them. And you never know where that might lead.
I know the fear of asking. But I also know that you can try things, ask questions and open new horizons even if you’re afraid or embarrassed. It’s another step on the journey to finding your own ‘roar’.
Listen to your gut feelings. Ask. The worst you can get is a “No.” I bet, in our journeys as special needs parents, we’ve experienced worse than that.
So consider: How can you be a villager?
My story shows one way that you can advocate for people in your own village. I hope this helps stimulate ideas about how you can create an opportunity, no matter how small, to help someone with special needs develop skills and pathways for meaningful living.
If you are a parent, carer or sibling of a special needs person, keep on doing what you’re doing. But be sure to keep your eyes open for those special people who you might want to draw into your family member’s village.
Until next time, Happy Wombatting!