What is it about?

The rollercoaster adventures of parenting three kids, dealing with disability and mental health - and discussing disability discrimination and how to tackle it.

Friday, 16 October 2009

Random Holiday Thoughts

I promised the boys a "Dutch sandwich" (aka nen boterham me hagelslag, or a sanbo with chocolate sprinkels) if they tidy up the house a bit. So, they are busy in the living room, and I have 5 minutes for some random thoughts.

- School holidays are anything but holidays for mothers!
- The weather has been crap, we've hardly been swimming.
- I made a chook run, the one and only thing I managed to do these holidays
- Tante Anita is in the country, and we had a nice two days together. The kids look forward to her coming back in two weeks and spend more time with her.
- We had a lovely 5 days away in Avoca on the beach. We did pretty much nothing. It was heaven. Even Beaver sat in his chair and just looked out of the window for a while. Unheard of!
- I have a lovely big Waterdragon in care at the moment. Gorgeous boy!
- We have got funding for Boo Boo's manual wheelchair (well, actually, modifying Beavers' old one to suit to her needs, but that will be another post soon).
- I have found a Shotokan Karate Club in the suburb next to ours. Dojo hours are just after kids bedtime, and on those evenings Hubby does not go to Yoga, and not the day our regular babysitter comes. How good is that! Finally everything has come together. I can't wait until next week to start again.
- Congratulations to Lieve and Stefaan for the birth of their twin boys, Tibo and Siebe! Well done mum and dad, two brand new future Aussie beach bums!
- We are still finding dust everywhere in the house from the dust storm. I think we still will for weeks to come
- Can you believe it's only 17 more days (yes, the boys made me count the days) until Oma Helma and Opa Manfred are here! I better start tidying up downstairs asap!
- Boo Boo said just before the holidays 'NO MORE NAPPIES". And true to her word, she has not worn nappies since (except in the night). We still have heaps of accidents, but she will tell me when she need the toilet (using the "toilet" sign and saying "poo poo" or "wee wee"). I am very proud of my clever big girl!
- I am reading some interesting articles, and thinking about starting a PhD year after next. Hmmmm....
- Shakespeare is just around the corner, and I have lots of props to organise. Anyone have a spare fake log lying around that I could borrow?
- Tonight we're having fish and chips with Oma and Opa on Manly Beach.

That's all for now folks. Boo Boo is awake, the house is tidy (I think) and I better go and make those promised sandwiches. Bye for now.


Dianne said...

Wow! A lot going on around your way!! Yay to Booboo for her 'no nappy' stance and I am very keen to hear more about how the karate goes. It's something I have on the 'future' agenda....
Enjoy the end of your hols!

Susan, Mum to Molly said...

Definitely agree with you re being a mum to three and school 'holidays'. Glad you got your 5 mins of peace to blog! Did the boys get their hagelslag?

As always, am in awe of how organised & proactive you are re equipment for Boo Boo. Molly's a year older and we're only just looking at first proper wheelchair (still using stroller/pushchair type).

Which leads me to a, probably dumb, question (or two): what will Billie use a manual chair for? given that she already has a powered chair and Hart Walker...

Would it be mainly as backup?? or is there a particular setting in which it would be her best choice for mobility?

Is it/the modification being funded by Enable/PADP? The reason for my questions is that we are having to make a decision about what to apply for (via Enable) and trying to decide re manual (which she couldn't self-propel) vs powered chair.

Thanks in advance, Susan

Heike said...

Susan, I responded to your question directly to you - but as some others may have the same question, here is the answer:

The manual wheelchair replaces the pram. Prams are for babies, wheelchairs for big kids who can’t walk. I think this is very important for self-esteem and all that.

We have got the manual chair for two reasons.

The powerchair can not go everywhere as easily. One step, one high-ish curb, and you’re stuffed. With the manual chair you can fold back the anti-tipping wheels and go boom boom boom up and down stairs as you do with a pram. Also, the powerchair takes quite a bit of effort to load and unload. When I take the boys to school, I just need to quickly get Boo Boo in an out of the car. And I don’t always want to have to negotiate her driving off somewhere (just like sometimes you put a walking toddler in a pram because you don’t want them running off, I guess).

Secondly, I have some hope that Boo Boo will have enough strength to push a manual chair one day, as this would be far more convenient and accessible for her (for the reasons given above). It is also good upper body strength. I am going to be the fist in the country to try a lever system installed on the wheels which will make self-propelling easier for her. It has been used before in Oz, but oddly never on kids. I’m importing a US version which fits smaller chairs. How did I find this? No, not from TSC but from another parent! My OT likes the look of the device and is keen to give it a try.

We had an application in with Enable, but have just been told that TSC has money from the 20/20 challenge and have decided to fund the wheelchair conversion for Boo Boo. I nearly fell off my chair!!!!

Are you sure Miss Moo will not be able to self-propel? Ever? Pretty much no kid can at her age (although Boo Boo can now manage a few centimetres, enough to turn away from me!) can do that, but if the future ability is there, it is good to start now. Get them used to the idea. Start building up muscles. As with everything, the sooner you start… And with the lever system, you need 60% less power…

I would ask for both. Both have a very different use. Put simply, one (power) is for her, and one (manual) is for you. She will need both. She needs power for independence, and manual instead of a pram. She need to be a big kid, and she needs to sit properly…

You will get both on PADP, but you won’t get the powerchair as quickly I imagine. But then, if she can drive the powerchair, better to go with that one first (seeing it generally takes longer to arrive). She’s heading off to school soon no? She should really have one for school!!!!

Heike said...

Here is the link to the lever system. There is another one which is currently in use in Australia. It's called NuGo or something, but only works on 24 inch wheels. This one can do 20 inch wheels. We have 22...


Susan, Mum to Molly said...

Thanks very much Heike.

I think the reason we have "got away with" the JazzEasys pushchair for so long (appearance-wise) is that with the canopy off it looks more like a wheelchair than a pram, and people tend to respond to it as such.

Unfortunately Miss Molly has virtually no purposeful movement in her left hand/arm, so if she were to self-propel in a manual chair she would need to do this all/solely with the right hand.

I know that there is/are device(s) which make this possible (double rim on right wheel, maybe also a lever option??), but when I looked into them at the equipment expo earlier this year I could tell that we're a LONG way off in the skill/strength department.

She's far more interested in zipping around in a powerchair! Not surprising really... ;-)

I'm thinking we'll apply for an AMS powerchair which has an extra manual base, all of which we could get for about the same cost as the preferred manual option. She'll be starting school year-after-next (2011), local preschool next year.

Would it be right to say that Boo Boo doesn't use the Hart Walker much when out & about, mainly at home??

My aunt (who is desperate for her NOT to have a wheelchair, of any type) has visions of Molly playing soccer in hers. We are a LONG way off that!

We've progressed to being willing to stand in it, but any suggestion of taking a step causes tears and screaming. I still think she's not 'right'/comfortable in it (pelvis & knees look all rotated, feet too far apart...).

Anyhow, enough rambling from me. Thanks again for the insights.