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, 19 March 2008

Systems Overload

I haven’t posted anything for a while. It’s not that there is nothing to write about. On the contrary, my heard is bursting with words. It’s not that I have no time, in fact I’ve read all the blogs I follow, including all the posted comments (and enjoyed it, thank you all).

You know that feeling when there is just so much you want to say that nothing comes out? I have so much to write about, but my brain is so hyperactive that I can’t sit down and get started. I’ve tried every day since the last post, and it’s just not happening.

Today, I forced myself to try – if I don’t’ write something now, I’ll go bananas.

The main thing on my mind at the moment is wheelchairs and money.

We’re hearing it from all sides – Boo Boo needs a wheelchair. Her mobility is vital for her cognitive development. So the OT said she’ll look into it (that was on the day Boo Boo got the little bike). But I haven’t heard a thing from her. Of course I trawled the internet for a few evenings and found some very nice looking chairs, one in particular that I like very much. I sent the link and a print out copy to the OT. Still haven’t heard from her. Apparently she’s looking into something else – but she hasn’t communicated to me about it. I’m getting a bit peeved here.

And so, my mind is full of thoughts about the wheelchair.

I want one. And I want it this year.

I want to know which one. I want to know how much it costs exactly. I want to get an application in, ideally before the end of the financial year. I need to know if this thing is coming or not, and when, and I need to know how much it’s going to cost.

You see, an electric wheelchair is expensive – and the really nice one I have my mind set on cost about $25,000. Yes, you read that right. Twenty five thousand dollars.

I'm pretty sure PADP will knock us back, at least initially. We might get it after appealing. But then, how long will it take? PADP is notoriously slow, and the whole point of the chair is to get Boo Boo mobile right now, not in two years time.

When we applied for Beaver’s manual wheelchair, PADP were impossible, and in the end we decided to buy the thing ourselves. All the grandparents chipped in and we had a wheelchair in 4 weeks time. Mind you, it only cost $3,000. There are conversion kits to turn manual wheelchairs into electric ones, but they’re nearly as expensive as a new one. Still, I like the idea of converting Beaver’s old chair – but I can’t find more info, and am waiting for the OT to resurface.

And second hand? Well, that would be nice. But there aren’t that many second hand electric wheelchairs for two year old children around.

Problem is, I don’t have a spare $20,000 lying around.. I'm not sure I can add the wheelchair to our mortgage - renovations to make the house accessible have not yet finished, and with the interest rates being as they are, well, you all know. Then, off course, I'm pretty sure the thing won't fit in our car (Honda Odyssey) so what's the point of getting a set of wheels I can't take anywhere. Buy the wheelchair, buy another car and convert it .Where is this going to end? We’re looking at a possible $120,000 all up.

Our daughter is only 2, but cognitively completely on track with her peers. The therapists are keen to avoid her getting behind, so she needs to be mobile to explore and learn. I want to avoid a delay - Beaver is about 2 years behind, and while it's not the end of the world, it makes school hard. If it can be avoided for Boo Boo, I would be a bad parent for not wanting to avoid it.

How much is my child's cognitive development worth? To the government? To me?

I need a wheelchair for Boo Boo, and I need it soon. See how my mind goes round and round in circles?

I know a solution will be found. I know I just need to take a deep breath, and start working on this, one step at a time.

But in between the daily rigmarole of life, trying to sort out a snag with the Council over the promised car parking spot outside the school, getting a Second Skin or Thera Togs splinting system and new shoes for Boo Boo, starting potty training, getting Beaver back to attend Conductive Education (he hasn’t had any therapy for more than two years now) and get serious about doing his extra reading programme, well, my brain is full. And I won’t go into the two books I am planning to write, the TV series Hubby and I want to write, and the CP Resource Guide plan I have.

Systems Overload, error number whatever. Time to take a deep breath and re-boot…


mommy~dearest said...

Ohmigosh...I'm exhausetd just reading about all this!

Fiona said...

It's like the house that Jack built:

Rebuild the house and buy/modify the van to take the chair that your child needs to move around home and outside to be like every other kid. Hundreds of thousands of $$$ later ...

anita said...

Kopf hoch!!!! Es findet sich immer ein Weg: Ausserdem bin ich ja auch noch da!

Jacqui said...

As you know, we are on the same merry go round. It is funny how your views change as you go through all the motions. I started out intent on getting the koala too. Fiona has been incredibly patient with me as I find out that everything that she initially told me is 100% correct.

good luck with your journey.