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.

Wednesday, 15 April 2009


Phew. Sometimes it's hard to catch your breath.

I've been a bit busy. Beaver to anxiety psychologist, kinesiologist and physiotherapist (finally, after requesting some in 2006!). Finding a soccer club for Possum. Boo Boo and Beaver to get splints (AFOs), appointments for wheelchairs, walkers, shower chairs. And then some meetings with politicians and journalists to get some things happening, some ACD work I need to prepare, moving around furniture to make way for some desks for the boys and sorting out clothes to go from summer to winter school uniform – and all that in the school holidays! And of course, Boo Boo has come down with a fever tonight.

Thankfully, I've had some extra help. Francine has been around – and boy does an extra pair of hands make a difference – and Sanna has arrived and is settling in well after an initially difficult start with jet lag and a stomach bug. And thankfully things have been quiet on the animal front, just one concussed bird and one blind possum. Phew.

Boo Boo's third birthday and birthday party has come and gone. Yep. She's three years old now, that girl. We had a lovely little party for her, with some friends from preschool and kid she'll go to primary school with (they have siblings in the boys' classes or we know them from the school community). She loved every minute of it, she rather likes being the centre of attention. I do wonder where she gets that from? One visitor in particular was a highlight: Patrick, her love from preschool. I kid you not, she squealed in delight when he arrived, and actually screamed "Pa-Rick" when she saw him coming. And walked up to him to give him a big kiss. Yep. Preschool luuuurve…

Being three years old also means, of course, that her disability is now magically gone. Yes! Well, at least, that's what our disability service provider seems to think. You see, you turn three, and suddenly early intervention stops, and you have to go on the waiting list for services. You will still get some until you are five, but once you hit school age, it's all over. Early intervention is done. All you then get is "maintenance". Hmmm. I am so happy with the state of disability services in NSW. ..

Thankfully, Boo Boo's therapists are very nice human beings. We have been trying to get a shower chair and a manual wheelchair sorter for her. You see, she's getting a bit heavy (11.7 kg) for me to hold in the shower. Especially when soapy and wet. And the IKEA high chair is getting a bit small. I do wonder if PADP would approve my request for a shower chair. Someone told me about another mother who was told by PADP that a shower chair was not going to be funded. When the mother asked how she was to wash her child, the person from her PADP office told her "there is always the local pool." I kid you not!

Also, I'm keen for her to start using a manual wheelchair so she can develop some upper body strength. There is really only one wheelchair for little toddlers that I like (because the wheels can be turned back to front) but nevertheless, if I want to ask PADP to fund the chair, I need a therapist to tell me this is a good chair. So we did not manage to make this appointment (me, Boo Boo, my OT and a guy who supplies the chair) to get in one room together before her service plan ran out. So they have kindly extended her plan bu two months to finish off the shower chair, wheelchair and walker choice without me having to go and waste more time on a waiting list. Phew.

But then, of course, even if we decide on the wheelchair next week, I will still need to decide if I ask PADP or not. Seeing that I gave them a hard time in the recent parliamentary inquiry, it could go both ways. They can thing "better give that woman something" or "that trouble maker woman ain't getting nothing from us." And then, if they accept, the average waiting time for a wheelchair is 18 months. Do I really want to wait that long? Or shall I just start saving instead? Kafkaesque though, don't you think?

You are probably wondering why I am looking at blimming wheelchairs again. Haven't we just been there, done that? Well, yeah. But that was a power chair. A power chair is very important for her independence. But I think a manual chair is equally important, for her strength. My aim is to get a chair that is easy for her to use, and then add a lever system to make it even easier (not tried before in Australia with kids, as far as I can tell, but someone's gotta be the first one). I want her to build strength in her arms and shoulders, to be able to self-propel without the need of electronics. And also, to work on her arm strength needed for her walking.

Yes, you read that well, arm strength for walking.

You see, at the moment she's doing unexpectedly well in a Kaye walker with arm rests. See?

(Gorgeous photo by Robjess)

Some of you out there may remember Beaver used to use one of those. Look, here he is. Yes, that's him (in June 2003, age 2.5)

So my aim for this year is to have Boo Boo walk in the basic Kaye walker without the arm rests. And maybe one day, we can move on to quad sticks. And maybe one day – STOP.

Stop right there. One step at the time.


Anonymous said...


this is so great to see Boo Boo on her feet in the walker, and with that smile on her face... Go, girl, go!


Susan, mum to Molly said...

Phew is right - I had to catch my breath just reading this post!

Thanks for the update. And belated Happy Birthday to your gorgeous Boo Boo!!

She looks sooo grown up in that photo! Well done on the walking, you clever thing BooBoo.

tanteanita said...

Oh Heike!!!
Es ist mir das Herz aufgegangen als ich das Bild von BooBoo im Laufstaender sah.Ist das schoen!!! Sie macht ja riesige Fortschritte.
Tante Anita

Alison said...

I have met you at playgroup as we share a 'service provider'. My daughter is 3 tomorrow and will also apparently wake up cured and no longer in need of therapy!

I am interested in your choice of wheelchair as we are also looking for a wheelchair and a walker and are having trouble finding a chair that she is able to reach the wheels so she can push herself along. Is Boo Boo able to push herself along in the one you mentioned above??? The wheels don't look as big as on some other chairs so I just don't know if my daughter would be able to reach. I might email your link to our OT and see what she thinks.

Your daughter looks great in that walker!


Anonymous said...


It's absolutely ridiculous that all services stop once Boo Boo - and all other kids with CP - turns 3. Happy belated to her, by the way. Good luck with your endeavors, I hope you have some support in changing the system. It ain't easy.

"There is always the local pool."

xo - Monique