The right to education

I’ve written another post for Firefly, and this one is a little more political than usual. I generally try to steer clear of politics when writing this blog and about Miss Z because my objective is to share our experiences, not my personal views. However, sometimes the two overlap and I feel compelled to explain a bit more about how some of these political decisions can affect Miss Z, our family and those in a similar situation.

Re-reading my article online after Firefly published it, I got a feeling that I might have been a bit too conservative with my opinions. This is a topic on which I feel very strongly, after all. And I think it is one that not everyone fully understands.

I hate the attitude that I find, even among well-meaning people, that Miss Z’s education is optional, a fun activity for her to fill her day, or a welcome break for me to relax. Her education is every bit as important as any other child’s.

Yes, what she does in school every day is different from your average first grader. But that doesn’t make it less.

Some people might argue that there is no need to invest in her education because after all, its not like she is going to graduate, get a job and contribute to the economy. While that is probably true – disabilities and medical fragility aside, she has a life limiting condition that means we aren’t even sure if she will make it to graduation – it is also a narrow, old fashioned view. Amazing technological advances mean that being nonverbal or having a disability isn’t as limiting as it once was. Who knows what technology will be available or the world will look like when Miss Z is an adult?

And even if she never does anything more than live at home with QB and me – does that mean that she shouldn’t have the right to a good education?

There is one thing of which I’m very sure: Miss Z’s education will improve her quality of life. It already has in the year (and a bit) that she has been going to school.

So, don’t ask me if Miss Z is going to school (she’s nearly 6 years old, of course she is) and don’t think that we only send her there so I can drink coffee or work (although it is an undeniable side benefit). She goes to school because, just like other children her age, she needs to learn to socialise with her peers, become more independent, communicate more effectively and become literate and numerate.

And most importantly, wherever you live in the world, do not let politicians tell you that Miss Z and children like her have any less right to a good education.

You can read my blog post for Firefly here.

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It’s the law

I’ve written an article on Z’s law over at Firefly, if you’d like to check it out! You can find it here.

We’ve got a great example of Z’s law going on at the moment, in fact. After two weeks of terrible, multiple seizures on a daily basis, we’re scheduled to be admitted to the hospital this afternoon for a 24-hour EEG and observation. So it would only stand to reason that Miss Z had a fantastic day yesterday and woke in the cheeriest mood ever this morning. I mean, obviously I don’t want my kid to have seizures just to show the doctors that things have been bad, but if maybe she could look even a little bit poorly, I could preserve a tiny shred of dignity when we meet the doctors…

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But seriously, could you at least look a little bit miserable? Please?

And then there was a lift!

After a lot of noise and dust, we have (drum roll please) – our own, personal elevator in our house.

It was a surprisingly quick process – once the lift arrived in Brisbane, that is. After the general builders knocked the hole in the floor/ceiling, the lift builders arrived and took about a week to install the lift and run all the necessary tests to ensure that it operates safely.

Then the general builders returned to finish things off. As far as building projects go, this one was straightforward and drama-free.

So, here is the big reveal – our new lift!

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The upstairs part – which exits into Z’s new bedroom

…and…

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The downstairs section – which exits down a ramp into the garage

As you can probably tell from the first photo, the next step in the journey is to finish decorating Miss Z’s new bedroom. Once it is painted and the carpet laid, she can move upstairs. That will be the completion of phase one of “Project Home Modifications”.  The next steps will be to install a ceiling track and hoist system in her new bedroom and remodel the bathroom so that it is fully accessible for her.

The lift has come just in time. Miss Z is growing like a weed and now weighs around 25kg (55lbs) – making it increasingly difficult to lift and carry her, especially up and down stairs.

There was lots of excitement when we were finally given the green light to use the lift. I have to confess to going up and down it by myself several times (the girls were at school). Then our care worker arrived and I took her up and down a few times. Vegemite arrived home from school and was thrilled to try it out.

There was one person who wasn’t quite as enthusiastic:  Miss Z.

When the school bus delivered her home, she was fast asleep, and steadfastly refused to wake up (even with a bit of sisterly encouragement) to admire the new lift. So, she slept through her first ride. And many rides since then. In fact, I’d say that her favourite feature of the lift is that when she has an afternoon nap on the bus, she doesn’t have to be woken to be carried upstairs, but instead can continue sleeping as she’s rolled into the lift, taken upstairs, and rolled back out, and then parked in the kitchen where she continues to snore happily for up to an hour.

At least, in her own way, Miss Z has made the use of the lift her own.

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Miss Z and her unwaivering dedication to sleep

 

And so it begins…

At 7am this morning, a man began knocking a hole in the ceiling of our garage and the floor of our spare bedroom. By 10.30am, there was an elevator-shaped hole in our house.

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Before…

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…and after

Not to mention the fact that the closet doors are the only thing separating my office from the garage!

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My office is on the other side of these closet doors

So, now we have to wait for the lift to clear customs. Hopefully it will arrive by the end of the week and construction will continue.

 

However, what was really amazing today wasn’t the giant hole in the floor or the fact people can now pop out of the closet and surprise me while I’m working. The really, really amazing thing is that Miss Z slept through the process of knocking down walls and cutting giant holes in the floor. The overpowering noise that had me wanting to hide in a closet to escape. She completely slept through it. She has won my respect – that is a serious commitment to sleeping in during her last week of school holidays.

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Miss Z demonstrating her unwaivering commitment to sleep

Love lift us up where we belong

The only problem with the title of this blog is – as everyone with a mobility issue or who lives with someone with a mobility issue knows – love can’t lift you up where you belong. In Miss Z’s case, someone who loves her has instead been lugging her up a flight of stairs to where she belongs, and then back down the stairs again later.

We live in a “Queenslander” style house, which means it is raised up. Although previous owners have converted underneath into additional bedrooms and an office, most of the living space is upstairs. Until now, Miss Z has had her bedroom downstairs (to be close to us) but spends her days upstairs in the living areas of the house. This has meant that we need to carry her up and down stairs.

Miss Z is now 5 1/2 years old and weighs 23kg (50lbs) and no matter how much we love her, it is getting harder and harder to carry her up and down the stairs. And it is becoming less and less safe for everyone.

This comes as no surprise – we’ve known this day has been coming for a long time. Our initial hopes at a “quick fix” that might resolve the stair issue were a flop. After a lot of discussion (some of it quite emotional), a lot of advice from occupational therapists, builders and equipment providers, and a lot of planning, we have decided to install a small lift (elevator for those of you in the US). It will start in the garage and office closet and go up into what is now a walk-in wardrobe in our spare upstairs bedroom – which will be converted into Miss Z’s new bedroom.

Making major modifications to our house is both scary and exciting. Scary because it involves significant amounts of money and exciting because it could transform the way Miss Z accesses the house.

The lift is manufactured in Europe, so although we made the big decision to do it several months ago, it is only now arriving in Australia. In the coming weeks, construction is scheduled to start.

I will update the blog on our progress. However, in the meantime, please keep your fingers crossed for us!

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The upstairs bedroom – all cleared out and ready for work to begin