School excursions

Day 193

I joined Abbey on a school excursion to the Queensland museum. There was not a lot of interactive displays for her, apart from this ‘crab pool’. It’s a motion-sensored light display. If Abbey tapped her hand, it caused ‘ripples in the water’. We stayed there for nearly 40 minutes chasing crabs and making waves!

It was magic.

When will the paperwork end?

In January to early February I filled in over 50 forms equating to about 150 pages of paperwork related to the needs of Abbey. Yes, I kept a tally for about 30 days, just to see why I get upset.

We all hate paperwork, but a lot of it is frivolous due to internal policies and procedures of government or businesses in the disability sector.

This doozy is a form we need to fill in to allow teachers to administer medication at school. Perfect and extremely important for regular medications. Things can change quickly though, and this is when it tests procedures.

Abigail had stopped taking this medication, ahead of schedule while at Hummingbird House. To ensure it would not be administered at school, this form had to be filled in again and signed, advising not to administer. All to be done before the dose due at 12pm. Lucky I was home or Abbey would have been medicated.

I understand the need to cover bums for legal issues. I did it with a smile on my face and laughing at the situation, but one snide remark that this is silly.

I wish it was easier. I wish that carers did not need to run around printing forms to sign for nothing to happen … to photo and email back to prevent a course of action that would disrupt our children, all before a deadline.

A note in a communication book and via a phone call should be enough. And maybe it’s not enough.

All organisations who interact with carers or parents should have procedures in place that minimise the unneeded stresses to carers due to frivolous paperwork.

Who will take up this challenge?
Who will put the child first and allow us to do our caring role?

I am passionate about this. Carers waste a lot of time, energy, money and emotions filling out frivolous paperwork.

Watch out for future days as I share what is frivolous.

Working with the school to prepare for palliative.

Each day we are preparing for ‘the event’. Now that the word palliative has been associated with the medical needs of Abbey, I need to write and chat about some horrid topics.

Today I had to write an email for her teachers. Here is the essence of the letter.

“Hi Ladies
Just had ‘that’ phone call with school nurse. Icky!

We chatted about EQ policy and our wishes for Abbey should ‘the event’ happen at school. School nurse suggested we have a chat with Principal about ‘the event’, but I would really love it if one of you can be there please? Or both for such a lovely chat. Ha! It is so important you are involved in every step of this as you will be at the forefront. We are keeping those who are directly involved with Abbey close.

So I will be chatting to Ambulance Organisation first about their procedures and requirements, then wait for the letter to come through from Dr re palliative/resuscitations stuff and finally for James and I to process all of this before coming in to chat to Principal and you. Ick.

At the moment I would want to know:
(a big long series of stuff about how EQ policies and procedures intersect with our wishes and Abbeys needs)

For all moments in this journey we are looking for peace. Peace for Abbey. Peace for us. Peace for those involved with her care.


No photo: Please take a moment and hug those you love.