Potty

It's been nearly three weeks since I changed a poo nappy. Yes, you read that right.

Just in case you don't believe me, let me say it again. It's been nearly three weeks since I last changed a poo nappy. And no, the little mite has not been constipated. No.No, no, no.

Boo Boo only turned two earlier this month. And now, she has decided she's a big girl, and goes to the potty.

Yes, she goes to the potty.

She initiated this totally by herself. She's been wanting to take me to the toilet, and has been busy watching mamma and dadda and the big boys go there. So one day, I told her that when she's a big girl, mamma would get her a potty. She nodded sternly. I asked "Does Boo Boo want to try a potty now?" and she nodded vigorously. So I went down to the laundry, and dusted off the old potty

Since that day, the young madam has been doing her poo poos (and the odd wee) on the potty. She signs when she wants to go (we use the sign for "toilet" rather than "potty") and off she goes. We've only had one accident, on an afternoon when we had lots of kids running around the house, and in the excitement she either forgot to sign, or I missed the moment.

We have gone from marathon sessions to now quite targeted "ask for potty - on the potty - do the business" sessions. When she's done she says "bye bye" or answers affirmative to my "Potty finished?" question, and that's that.

The only problem I have with it is that the pull-ups are all to big for her (she's still very small because of her reflux) and they don't seem to catch her wee, so I have to use traditional nappies, which aren't that quick to take on and off (and don't seem to come in my biodegradable nappy brand.

But gee, I am seriously chuffed. That is pretty good for a kid with a neuro-muscular disorder. And may I just take a moment here to brag - of all the cousins, she's the fastest so far (unless you're up for the challenge, Rommers!?). And all this initiated by her.

've not wanted to post on this, since I didn't want to jinx things, but we have now reached a comfortable stage and I dare to hope. Once this whole thing has become routine, we'll start working on the wees. Life without nappies suddenly seems like an attainable goal in a much faster time-frame than I anticipated!

And just because I'm so proud, here is a picture (don't worry, it's all very decent).

Here is a story I have to tell.

One of the CPecialparents, let’s call her Viv, attended the Regional Ministerial Community Forum in Queensland last Monday, and here is her story.

There was an unexpectedly large number of people with questions for Lindy Nelson-Carr (the Minister for Disability Services among other things) on the subject of disability, so they pulled the Minister out of the second part of the forum and set up short one-on-one meetings with us parents/interested parties, and her Senior Policy Advisor was also there (thankfully - overall he seemed much more aware of the issues, and more sympathetic, than the minister).

Viv told the Minister about her young daughter with CP, let’s call her Pippa, and came to the subject of cars.

She asked specifically why there is no funding available for vehicles and modifications to make them wheelchair accessible. When presented with the facts and figures, the Minister seemed surprised at the cost. But she was quite clear. She said there will never be funding for cars as such that it just won't happen, end of story.

Ok. Fair enough. But what about helping families with the cost of the conversion, and at least making a car and or the conversion tax deductible? Says Viv:

“When pushed on this, the Minister said she supposed it was a better option for the government to encourage the use of taxi services, and told me (and I quote!) "In your case for example this might mean you could put your daughter in a cab, then drive in your own car to meet her at the other end, or whatever. I was flabbergasted. I told her I didn't think that was a very real option and got a glib smile in return.”

Excuse me?

Who in their right mind would suggest you pop your 5 year old in a taxi to send her to the shops, where the rest of the family meets them? There is no way I’d do that to my kids – we are a family, and we travel as a family. And apart from this fundamental issue, what about the madness of an extra car (and its emissions contribution to environmental pollution) on the road? Does she have any idea how long people wait on average for a wheelchair accessible taxi? And what about he safety issues of sending a young potentially vulnerable child in a cab on their own?

Is she supposed to do this every time the family goes out? To the shops? The library? The Dentist? Visiting grandma? Big sister’s Saturday morning soccer match?

As another CPecialparent so eloquently put it:

“Why not guesstimate the cost of Pippa’s taxi to/from school, therapy/med appointments, swimming, shopping, "accessing the community" etc, multiply it over 15 years and see if this economically-challenged minister thinks it would be cheaper to do this than make an accessible van 100% tax deductible. Honestly, who votes these people in? She'll probably head up treasury in the next cabinet reshuffle!”

Honestly.

This sort of thinking is the hardest part of having a child with a disability.

Thankfully, the Minister's Senior Policy Advisor was quite interested in the idea of full tax deductions on equipment etc, said he would investigate it further himself.

Yesterday, at another Ministerial Community Forum (this time in NSW), our Prime Minister faced another mother of a child with a disability, challenging the current lack of services. As she put it “we take care of him now. But who will look after my son when I’m dead?”

Mr Rudd acknowledged that he has been confronted with these sorts of questions from carers again and again, and he conceded that some work needs to be done.

Well, he gave us an Apology. He gave us his signature on the Kyoto Protocol. He gave us a female Deputy Prime Minister and just recently announced that our next Governor General will be a woman.

Let’s keep pushing him for some reform in disability services.

Including tax deductibility of vehicle conversions…

Sitting!

It's just a minute or two.

It's not very comfortable.
But she's sitting all by herself!

Looking and Standing Up

After being sick for a week, and things falling apart around us, things are finally looking up.

On Monday, Boo Boo got sick, and terrible as that sounds, that was good for me. We took the boys to school in the morning, and 2 minutes into the way home, she fell asleep in the car. This is the girl that never, ever, sleeps in the car, not even when she was a baby. In fact, if she did anything in the car, it was scream (a neurological thing, I've been told). So for her to conk out in the car is amazing. Once home, I gently transferred her to her bed - and took myself off to the sack. Boo Boo slept from 9 in the morning till 3 in the afternoon. I crawled out of bed for some lunch and an important bill that needed paying, and slept the rest of the day. Then, we all went to bed really early - can you believe I tucked in for the night at 7:30?

As a result, I feel positively human today, and Boo Boo looks like a new girl. Her eyes are no longer weepy and red, she drools less, and she's simply down to a runny nose.

We're not the only ones sick - today, 36 children did not turn up at school. Most are sick (although some are wagging school because their parents have left for an early holiday) so that's a potent virus going round. And off course, being the caring sharing kind of people we are, Boo Boo and I have passed the virus on to Daddy. Yes, it's now Hubby's turn to feel crook. He's had to postpone his trip to Tasmania and cancel a few work meetings to go home and recover.

Other good things are that the car has been fixed (at the relatively cheap price of Aus $ 4,000, which is about half of what we were fearing) and the power in the house is back on.

\We have decided to sell the car (and the lucky buyer will get a well maintained car with a completely new transmission in it) and buy a new Tarago. This car will be large enough to hold all our kids and an electric wheelchair strapped in the back. We won't convert it quite yet - we're hoping that Boo Boo may surprise us and be independently mobile for at least a few steps, and then we can get away with a foldable manual wheelchair. But, if we need to convert, we can.

The power loss was due to water leaking. The good thing is that once the circuit dried out, the fuse stopped tripping, and all is working again. The bad thing is that it's raining, and will be for some more days to come, so I'm chasing the builder (he promised to come round early next week, fingers crossed) to come and finish the cladding so this does not happen again. Phew.

And one other thing.

Our pediatrician is a Steiner trained guy. According to his philosophy, fevers are very beneficial and bring a child's soul to a higher plane. He is convinced that after a fever, children always achieve new skills. While we're not Steiner kinda people, we have noticed that fevers, or a good illness, do seem to bring about some change.

Well, today Oma Ine and I went shopping for some new shoes for Boo Boo, on the recommendation of her physiotherapist, who wants Boo Boo to try some firm, support giving shoes. They are not my cup of tea, but Boo Boo is totally in love with her shoes. Here they are:

And after all that exhausting shopping, Oma and I sat down for a coffee. Boo Boo - with her new shoes on, off course - insisted on standing on the coffee table and drinking her babychino - and she must have stood there for at least 10 minutes. We were impressed.

On our way out of the shopping centre, she got to have the ride I promised her in the little Wiggles merry-go-round. And at the end of the ride, she pulled herself up to standing. We were very impressed.

See (and see the smile on her face)?



It might be the shoes.

It might be the fever.

It's definitely an amazing girl.

Crook

Again, silence at this end. That's because we're crook.

I've not been feeling well all of last week, you know, a bit of a cold, and that general feeling unwell. I was counting on a nice quiet weekend to recover a bit. But, no luck. I mean, the weekend was great. On Saturday Boo Boo had her second birthday party, and on Sunday we caught up with some friends, and Beaver did it again - he played with the other kids!

But, the big weekend must have taken its toll on Boo Boo - by Sunday evening, she started coughing. All evening. And then, all night.

This off course means that she hardly slept. Nor did I. And as a result, I am really crook now. You know, the heavy head, dripping nose, hot face (so far a temperature just under fever), sore throat and cough. And Boo Boo's face is permanently wet - from tears, from drooling (must be the sore throat that's setting her off), and from some majestic boogers hanging out of her nose. Delightful!

We've skipped therapy today and instead been to the chemist; and are now fully stocked up, so tonight should be a bit of a better night. Hopefully that means I feel better soon - I have lots to write about!

For now, let me leave you with some pictures, while I go and collapse in front of the TV - just the news, and then off to bed.

Playing cricket with Jessie

Isn't he gorgeous?

Mister Casual on the bar stool

And here some pictures of the big girl birthday. We've been practicing the birthday song all week, and each time she proudly lifts up her arms at the "hip hip hurrah" part.

Boo Boo was soooo exited about all the visitors, and the cake (in the first picture she signs "cake", in the second one, she points excitedly. And then we all sang "Happy Birthday" and she promptly burst into tears. Classic!