Thursday, February 05, 2015


7.45 pm Unpicking the hem of a school uniform

7.15 eating dinner

6.45 cooking dinner

6.15 arrive home, clearing up the stuff left out on the bench so there was room to prepare dinner and putting away the groceries

6.00pm being called 'supermum' by a random marketer trying to get me to make regular donations to an animal charity

5.30 shopping for groceries - it's 10% discount in you buy today

5.00 dropping Hannah at her dance lesson - and going shopping for groceries

4.30 afternoon tea with Hannah

4.00 ringing venues to see if they've ever had a student with a disability cross their doorstep in a mainstream class booking

3.30 arrive home, more panadol, check emails and start ringing venues to find out about disability access

3.00 driving to pick up the kids, holding back tears, texting a friend to pick up kids and meet me out the front of the school cos I'm worried I can't hold back my tears

2.30 read email from school that makes me feel slightly more positive about school camp. Cry as I read it to my colleague.

2.00 working

1.30 working

1.00 working

12.30 lunch at my desk - working

12 - working

11.30 working

11 - sneaking to the lunchroom to get a cuppa wthout being seen, massive headache still there

10.30 take panadol, read fabulous email to principal of kids school composed by DH trying to capture our reaction to morning meeting

10. still crying, ringing a 'brains trust' to see if they have ideas

9.30 crying

9.00 crying, debriefing from a horrendous meeting at school with a colleague

8.30 sobbing as I drove to work

8.00 blindsided in a meeting - denying all the 'can't dos' being thrown at us about Hannah

7.45 explaining why neither P or I want to go on camp to 'take care of Hannah' aka - not your responsibility - and we didn't even get into the leave without pay that we'd need to take or the blow to her blooming confidence that it would bring....

7.30 driving to school meeting

7.00 getting kids fed and teeth cleaned and Hannah's creams on etc

6.45 encouraging Hannah and Kit to get out of bed and get dressed for school

6.30 double checking packed lunches for the day

6.15 getting out of bed, getting dressed and checking work emails

6.00am awake

I feel like I've been hit by a bus. I wonder what the closest approximation is for parents of 'typical' children. Every time it happens it blindsides us. Last year it was the paed who doesn't normally bulk bill us - he not only bulk billed but sent us down for xrays and further blood tests. Our crisis antennae went to full alert. Lucky all resolved and xrays were fine.
Today it was school camp. Perhaps I should just quote a little from the email we sent as follow up...

"I am not sure that the meeting we had this morning went particularly well. (We) ..... walked away from it somewhat stunned.

Throughout the years... I have always been impressed with your commitment to inclusion when it comes to Hannah. More specifically I have always believed your attitude and those of Hannah’s teachers has been that Hannah was part of the school community no different to any other student, regardless of her individual needs.  I also know that Hannah has thrived in the last few years because of this.

Sadly I felt this morning we were back to a position that I have not felt since the early days of Hannah’s education. One in which her disability is a burden and an inconvenience.

I had expected we would be using the time to constructively plan how to make the .... camp an enjoyable learning experience and what options were available to enable this. Instead I believe that a conclusion had already been reached before we began, that being, Hannah would not cope with the situation at all. To me it felt like the starting point of the discussion was what Hannah cannot do rather than what she is capable of. I believe this is called the deficit model by academics.

As always .....(we) are committed to working with you and Hannah’s teachers and are more than happy to contribute in a concrete and meaningful way. Having said that it is our job as parents to ensure that Hannah grows to be a confident,  independent and self-reliant person. This and the sense of Hannah  being singled out is our primary reason for being resistant to the idea of one of us being present throughout the three days.

I am absolutely confident that Hannah will really benefit from the camp ..."

Now we received a response which we are more than happy to work with and build on - so I am NOT complaining about this specific school - but today was BIG. It was hard. and I need to process and debrief - otherwise - I have learnt nothing and pass on no experience of value.

If I was to rewind my day it would have started with a very different meeting. Instead of asking seemingly random questions as to whether she could dress herself or wash her hair it might have begun with some positive statments about how she is adapting to middle school (yrs 5&6). Now there are issues of transition but overall she is keen to do well and if she hasn't go her act together yet - neither have the teachers - they are still finetuning what the year will look like - so surely they could find a couple of positive things to say???? Then the discussion needed to have 3 clear areas of focus:
1. self care - so are there any areas where you think Hannah might need some extra assistance; eg mealtimes, sleeping arrangements, getting dressed etc
2. how can we manage such a busy schedule and still allow Hannah to enjoy the range of places we are going to?
3. what level of additional supervision do you think needs to be in place to make this happen? Can you volunteer to help with any of this?

but that isn't what we got - and i know how easy it is in hindsight, but man today sucked. BIG TIME. 

All our flight/fight mechanisms were activated - this is our precious daughter, our gift to this community - and we will stand up for her EVERYTIME. At the same time I know we got defensive. We wondered if we were letting Hannah down, were we a 'fail' as parents? Should we have done more? Should we be going on the camp with her? Should we even be sending her? What do special schools do? Would she be better off in one? UGGGHHHHH and that self doubt means that when you ask me if Hannah can shower herself I sharply reply "yes" as if you are a bit of an idiot for wondering... but in reality I know that yes Hannah CAN shower herself (for example) but she does need someone to be aware and adapt the environment to ensure that she is able to get the water temperature right first.

Lucky we get new days. Tomorrow is our new day. I have a lot of work to do. I'm going to be ringing around various venues asking about disbaility access, creating a visual travel diary for my daughter and creating a "How to Manage..... Out and About with Hannah" list for the wonderful staff member that has now been added to the camp to help ensure that it is all Hannah expects it to be (she's very excited about being a big girl and going to camp) and maybe, just maybe a smidgeon of what P and I dare to dream of for her in this inclusion journey...

Cos EVERYONE is entitled to a chance.

1 comment:

Cate said...

Oh hell. I'm sorry. I know you'll figure it out but it's just infuriating that you have to. Xoxo