Tag Archives: wheelchair

How can I help my son get into trouble at school?

Yes you read that correctly.

Those of you who know us will wonder if there is anything else I can do to annoy the school further. Just asking them to obey the law and provide inclusion supports is proving too hard for too many.

The thing is, the cool boys get into trouble. That’s why they’re cool. Well, they are 13. So Mr S wants to be cool too. I guess he thinks he will be part of the gang that way. Makes sense to me.

So it’s my job – as helpful mama – to come up with some ideas for how he can get into enough trouble to get some cred, but not so much trouble he actually gets into trouble, if that makes sense.

Fortunately I’ve had plenty of experience getting into trouble with bureaucracies in the last 10 years. Something to do with not being able to be told what to do. Especially when my kid is treated differently, as if he is special or something.

So yesterday he wore jewellery to school. That worked quite well because he was told to remove it and of course couldn’t. The whole class noticed the fruitless struggle to lift both arms up to try to undo the neck chain. So it stayed dangling around his neck.

What bad thing can he do next week?

It can’t be obvious stuff like driving the wheelchair too fast because that really gets him into trouble. Although he has my approval for doing that when teachers are not looking and there is plenty of space.

It’s hard enough trying to live within (or gently bend) rules and not get into trouble, especially when the world is not inclusive.

But I’m amazed how much harder it is to try to get into trouble, albeit carefully and with credibility.

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What’s wrong with him?

If I had a dollar for every time we’ve heard that question from a complete stranger …

Unfortunately it’s so often the first words – after some serious staring – when people see a child in a wheelchair or using a walking frame.

I’m pleased to say many people – like rollercoasterparenting – give the “correct” response:

“Nothing”

Some of us with older kids have grown rather tired of this question, which we have heard maybe 1000 times.

Very occasionally (well no more than twice a week) we may become a little too loquacious in our response to an impolite, curious stranger:

“Why – is there something wrong with you that you want to tell me about?”

The stranger looks perplexed, mildly shocked.

“You don’t want to tell me about any of your medical conditions?”

Looking very shocked now, vigorous head shaking, sometimes accompanied by the slow dawn of realisation that they have asked a really intrusive, rude question of an adult they don’t know about a child who is sitting right in front of them.

It’s just words, I know, but words are important.

For the record – there’s nothing wrong with him. In fact, I think he’s perfect. He’s a regular annoying, noisy teenage boy with robust good health and poor taste in jokes who uses a wheelchair to get around because that’s easier and faster than walking with the help of a walking frame.

But I don’t discuss my family’s medical conditions in public with complete strangers. Do you?

So the next time you are curious, that’s fine, but think before you speak. And if you ask me about my kid’s medical condition, I’m likely to ask you about yours. In detail. In public.

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How many sticks to build a footpath?

Australia ratified the United Nations Convention on the Rights of Persons with Disabilities on 17 July 2008, one of the first western nations to ratify the convention.

Good. Now comes the hard part – getting various levels of Australian governments, government agencies and people in general to make inclusion policy reality. Time for deeds not words guys. We’d like to receive some inclusion action at least as good as the NSW Government offered to pilgrims with disabilities who visited Sydney during World Youth Day (week).

Maybe the Convention will be a bit of a legal stick. Inclusion is not a noticeable feature of the affluent area of Sydney that I live in; clearly the “carrot” of simply valuing diversity has had no effect. There is a little talk but not much action to enable inclusion for everyone, regardless of ability.

Indeed, my local council cannot afford to provide footpaths/sidewalks to enact their policy of “accessing the community”, despite collecting rate payments from homeowners in an area where most residential properties sell between AUD $800,000 and AUD $3 million.

Council has invited me to spend AUD $20,000 funding the construction of a public footpath on our street, whose development approval they will expedite. Isn’t that big of them? I guess I’ll own the footpath then. As Queen of the Footpath I may let the power go to my head and refuse permission for some people to “access” my footpath.

I had asked the local council to provide a footpath and a safe road crossing so my 13 year-old son could take himself independently between home and high school. This is a distance of under 1 kilometre, which currently we drive in our van as I won’t let him drive his powerchair on a busy road, mean mother that I am. Although, there is no accessible parking near his school anyway.

I can’t write to Council rejecting their offer of privately funding a public footpath until the steam has stopped coming out of my ears and the expletives stop whirling around in my head. In the meantime, I will send them this:

NOT ACCESSIBLE

NOT ACCEPTABLE

And a link to the UN Convention website. Article 9 is a good starting point – here’s an except:

On the fundamental issue of accessibility (Article 9), the Convention requires countries to identify and eliminate obstacles and barriers and ensure that persons with disabilities can access their environment, transportation, public facilities and services, and information and communications technologies.”

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The funny tummy family

By Activevoice1

Today is my son’s first day of high school and my daughter’s first day of her last year of high school. And my husband started a new job. We were a household of “funny tummies” this morning …

We arrived at high school without knowing who the aides were, if indeed they had been hired. Even worse, my big 12 year-old was in his manual wheelchair which horrified him, as with immaculate timing his power chair has died. At the end of the welcome assembly parents were politely dismissed and I asked if the school had uh you know actually hired any aides.

And lo and behold they had hired the two aides I requested when I helped interview for the role – a confident young woman with 4 brothers who my hormone-ridden son will fall in love with by the end of the day, and a fit, sporty bloke in his 40s who will not complain about OH&S crap. My son beamed, stood up (with my help) offered his hand to them both and welcomed them to “his” school. And he’d only been there 45 minutes.

Two diverse aides were was just one item on my list of requested supports, many of which the Ed Dept has never done before. Let’s see how the school goes with managing the technological supports and “left field” inclusion options which were recommended at my request.

So thank you God and principal, and Paul and Michael in the Ed Dept for listening to my views on what support at school kids with disability really need, and making it happen. I came home and cried tears of gratitude.

I remember when my daughter started high school: shy, anxious, knowing few other kids. I just wanted her to feel happy, safe and welcomed. That’s all I want for my son. He just needs different supports from my daughter because he can’t walk like she can. They’re both special, and equal.

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