Let’s Get Claire to Kindy

When Callum turned 4, he started at Kindy. I packed his lunch, labeled all his belongings, and dropped him off after about 15 minutes in the room. He was happy, I was happy, and I knew his needs would be taken care off. If they weren’t, he would soon let me know!

He could walk. He could talk (and did a LOT!). He was toilet-trained. He could feed himself.

She can’t walk without significant support. She really doesn’t talk, but she wants to be heard. She’s in nappies, though she really doesn’t want to be. She tries to feed herself, but makes a huge mess.

It’s different. It’s scary. It’s hard. It’s exhausting.

It’s a totally different experience to the one I shared with Callum in 2012.

In so many ways, we are luckier than any other new kindy family. Claire’s new teachers have been visiting her at her Early Childhood Development Program since Term 2 this year. They have been interested in her arrival and enthusiastic about how they can support her. At the Kindy Open Day, Claire, Matt and I experienced the one on one attention of the Teacher Aide who will work with Claire in 2015. We felt supported, encouraged, and thankful.

But… then came the crunch. Time to talk money. Funding. It’s lacking.

Best case scenario, $6000 is available to support Claire’s inclusion. This is to support aide time, and any additional equipment that can not be hired or adjusted to suit her specific needs. If every cent of this goes to aide time, the most support that Claire could receive would be 3 and a half hours, two days a week. The full program is 6 and a quarter hours, five days a fortnight.

I’m frustrated. I’m not sure I have the energy to go to battle again. But, I know I have to. For Claire, and also for those families who are going to be faced with this journey in the future.

Disability doesn’t discriminate. We aren’t here because we ‘could handle this’. Perhaps we can handle what is thrown our way, and at times I am grateful for the confidence and intelligence that I have that allows me the strength to fight for equality for our daughter. I imagine I have those qualities in more amounts than some others parents who have a child with a disability, and I am thankful for that.

I’m really tired. I am exhausted at the thought of having to write letters and emails and to meet with politicians. I already have the feeding, charades, therapies, and nappy changes to deal with on a daily basis, four years on. On top of all I will need to do to help make Claire’s transition to KIndy a smooth one for her, the Kindy teachers, her peers, her parents, and the parents in the community, it seems unreasonable that I should have to fight for financial support as well.

The Queensland Government have been plugging their “Kindy Counts” campaign since 2009, with the aim being for all children to have access to a quality kindergarten program by 2014. They committed to ‘ensuring all children, no matter where they live or what their circumstances, have access to quality, inclusive early childhood education.’ Claire can not access a kindergarten program in its full capacity without full time support of a teacher aide or another support structure. I also feel strongly that her inclusion in a mainstream program will have significant benefits for the children and families who get to be a part of her story.

Let the battle begin.

My startup disk is nearly full

I have been cleaning out old files on my computer this evening due to the arrival of that pesky Mac warning, “Your startup disk is nearly full”. I had to delete a significant amount of files to free up some memory. I came across a memory of my own. I have no idea what I have planned for the piece of text, as it was drafted well before I started this (now-very-sporadically-updated) blog, but nevertheless I did draft it, and didn’t delete it in the cleaning frenzy tonight, so I’ll share…

24th June 2011

A year on…

I’m busy, I know, but I’ve had to stop what I’m doing to spare a moment to reflect on the last year of my life.

Today, it is one year since I visited my obstetrician’s office for a routine check up to be told that the results of my 19 week scan were in, and there looked to be some ‘anomalies’ with our baby’s brain. Nothing to worry about, but worth having another scan to just check it out. Tomorrow.

The doctor who was standing in for my regular OBGYN did a quick scan there and then, and told me that my baby’s heartbeat was strong and that bub was moving well. He asked if I knew what I was having, and I told him that we hadn’t wanted to know, but I was fairly sure I did know after the last scan. After the news of her brain, I decided to confirm it, and I knew for sure we were expecting our little girl.

In the waiting room after my appointment, I was paying my bill, and the receptionists were booking me in for the tertiary scan, “just to be sure”. Tomorrow. Tomorrow? Just to be sure?

As I left the appointment, I called Matt to find out where he was working. I wanted to share the news that we were definitely going to have a daughter. A little girl. For sure. But….and there was a but. A little but, but it was still there.

The text ended there, but that day is now a vivid memory again. In typical Callum style, the kid was playing with the electric controls for the check-up chair, adjusting the height and angles as I lay there somewhat dumbfounded by the news of something being ‘not quite right’. I was also trying to process the thought that I would be having a little girl!

After the appointment, I popped in to see Matt at work. He could tell I was worried as soon as he saw my face. He kindly arranged to change his plans for the following morning to come with me to what was an even more difficult appointment. That was the day the walls came crashing down around us and the roller coaster ride well and truly hit a downhill plunge.

More than four years on, it’s funny how the memories come up to the surface every now and then. Sometimes when I see a photo, or remember another event from about the same time. Sometimes when I find a list of appointments, or look through Claire’s not-so-‘little’ red health record, or see an old blog post or letter I have written. Sometimes when other parents share their stories with me, my own memories and experiences bubble up to the surface.

Sometimes I feel my personal ‘startup disk’ is reaching capacity too. There are lots of memories that could probably be discarded to make life more pleasant in my headspace. But, without each and every byte, I would not have arrived right here in this moment.

….Hannah x

PS. Mum and dad, there were 26 memories made on Sunday afternoon that could happily be deleted…Empty Trash!

The crazy kid accompanying me to these appointments!

A photo a couple of days before the journey began. The start of my last week at work before taking some surprisingly well-timed long service leave, but sadly the end of my days at a school I loved.