Tomorrow isToday

So it isn't a week since last week's meltdown but I am pleased to report that we are getting back on track. It's early days but the yellow brick road is gleaming postdownpour and I can see rainbows far off in the distance.

Lots of work later and I have a Guide written - Out and About With Hannah. The school has agreed to send an extra pair of hands along on camp - a fabulous TA who has a daughter that will be on camp too - and who is doing further study re Down Syndrome. So really I could say that this is a bonus activity for her!! Lol. Well I could say that if I wasn't a teacher myself - so I know that taking a group of kids away whilst very rewarding is in fact also a big imposition.

A couple of run ins regarding ipads - not quite sorted but on the way.... so progress is being made.

Hannah is still enamoured of the idea of being a 'big girl' so is trying to concentrate at school although I am told and totally believe that she gets pretty tired by about lunchtime.

Today I had to pick her up at lunchtime togo for a blood test - at the lab she took up the request form herself - and handed over her medicare card when requested. The Lab were great and quickly realised that as much as possible I wanted Hannah to be in the 'driver's seat' so asked herto checkher details on the form and blood sample - she didok on that  - I am sure she'll be doing it on her own like a pro before too long. So that impressed me - her confidence is growing. Then we went back to school to collect her brother and she was keen to go and independently show her friends her bandaid from the test - and then her teachers too.


Also this morning I got a call from her roll call teacher - it mightbe too late but there is a special needs event in swimming trials coming up - would I be interested in Hannah participating. My word I would!! Hannah loves swimming. So we talked about that and then I thought I could check with her oldswimming instructor - whether she could do 50 metres on her own - did she need kickboard etc. Now being the small world that it is, her swimming instructor happens to also teach her in her disability dance class and also happens to have a daughter in the same class at Hannah's school. So I got a text back not only answering my questions but offering to be the person to assist Hannah cos she'll be there watching her daughter anyway. Ahhh... sometimes I really love this life. I know that I am blessed - I know it every time I look at my twins (even when I am yelling at them :p) but I am reminded of just HOW blessed I am on days like today - and also on days likelast week's disaster cos even though it feels so incredibly hard and isolating in the intensity P and I stick together. We are a team. And then when the worst of the storm has passed I know that there are otherswaiting to help us through.

Here's some pics of Hannah swimming at the school carnival last year - she really wanted to go in the big pool.... and the daughter of that TA - well she swam alongside Hannah.... and I was told by a number of people who were there just how movingit was and how the whole stand cheered my monster child on.

Our army

This is the only army I'm interested in belonging to: special needs army

It's a great read - and a clear sign given I shared it on fb - thenight before the day I just had....

Bus(t)

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.

Family holidays

As the holidays draw to a close and the new school year looms large I am feeling a bit sad - all this free time and I still haven't ..... And ..... Oh my how will I ever cope with the return to the rhythm of our daily grind ... And .... #thelearningjourneygetssteeper!

So as I draw in a deep deep breath I'm going to start by reflecting on the holiday that was before tackling the year that is.

We've had our eclectic sparkles and lace on and lots of it's been fabulous.

A week at our favourite beach for example.

I'm here!

This boy just loves his time in the sun - no lack of things to do - and not a device in sight.

There's games for all.

Some flora and fauna from the yard

And a family bush walk in the arboretum 

More time at the beach

Hannah and I did a yoga class, Kit walked the hound.

And back to the beach.

And a spot of fishing.

An ice cream or two.

And fish and chips too.

There's a great set of swings near the seafood shop.

It was fun. A house that slept lots so Ps siblings came and stayed. Nan and Pop drove up for lunch one day. A family we're friends with through the kids school came up in the second part of the week and then another family joined us too so between Ps family at the start of the week and those friends at the end it was a relaxing but busy time. We managed the in renovated kitchen sans dishwasher magnificently and enjoyed the variety of company.

It did make me think though - it would be years since P has lived with his siblings - all under one roof (although technically his brother and fiancé were out in the converted garage/cottage). I can't imagine ever surviving even a few nights like that with my sisters. But then it's all about circumstances isn't it? My family all live a thousand kms away. P is one of 4 children - 2 of whom have cancer and 2 live in Sydney too. So circumstances aligned with a sizable holiday house - it was an opportune time for the siblings to holiday together. Ps brother was first diagnosed with stage 4 brain cancer after collapsing midway thru last year. Two surgeries and some ongoing chemo and although it's clearly a grim road in the end everyone is quietly enjoying this stage where he is able to get out and about most of the time and we get to appreciate our time with him. One of Ps sisters has breast cancer - it's an ongoing journey for her but man she's doing great! We are all a bit in awe of this mad mum of 4 who is determinedly living her life - and returning to the paid workforce as her youngest heads off to school. So yeah - it's not about our families being that different but like so many happy happenstances that occur in this life (like twins or extra chromomes), circumstances, opportunity and luck gave us some memories to treasure forever. Best of all are the memories the kids now have :-)

missing

for some reason an old friendship has been playing on my mind these holidays. This person was my best friend from grade 4 through until we both finished teacher's college. It must be almost 25 years since I have seen her. I am wondering how she is doing and where she is. Why is she on my mind? I have thought about her on and off at various times - like when I got married and she wasn't there.... or when my twins were little .... and she doens't even know they exist.

I have a couple of good close friends and a number of really wonderful friends I get to spend time with and share lifes joys and hardships with, yet I still miss that early close friendship - or is it the person I miss?

Anyway I hope she isn't in my thoughts due to some strange cosmic phenomena. I hope that she is well and happy whereever she may be.

Beautiful

Cruising

It was worth It's been a quiet week in the Dock so far. Took the kids to the nsw art gallery to see Pop to Popism. It was really good - not a lot that I like (I'm very fussy about what modern art I like) but lots of significant works well laid out for us to enjoy. 

Kit who has long loved Monet found it all a bit confusing.

It was worth taking him as those moments where he experiences 'firsts' are not as common as when he was younger.

Hannah loved all the colours.

And the popcorn cafe midway through.

We called in the kids room and decorated a soup an or two.

Then we found a giant icecream money box

I think they had enough fun to want to return for the kids access workshop later in the month.

Cleaning Up

Yesterday was spent fruitfully reclaiming the house - today I think it is the garden's turn..... So while I painted some pine furniture for the kids room P dug out a couple of shrubs that were dying and then decided to create a proper border for the front garden. I did a little weeding and planting of our orchard but the heat definitely won the day. Sitting here blogging with Prosecco in hand.

Kids enjoyed the laziness all this activity afforded them. I'm still seeking the ideal reading material - hence whiling my time here (lol). I am part way through Building A+ Better Teacher which is interesting and a couple of chapters into All That Is Solid Melts Into Air, but then I think b**#r it - I'm on holidays, maybe it's time to reread Lord of the Rings Vol1-3 or maybe just paddle through an Agatha Christie? 

I know it's such a mundane dilemma but believe me I do appreciate how lucky I am to have no greater concerns at the moment.

Here's today's pic collage - can you see that Hannah is wearing her rather old glasses cos she put her new ones on her Anna doll and Elsa is sporting Hannah's favourite pajama top. I painted the furniture white and P did the flower bed edging but it is very hot and sticky here today so now we are relaxing with a glass of Prosecco. 

It's a New Year.

I am loving our summer holidays. 6 weeks really gives you time to party and to wallow and to get some jobs done too. This morning Dad and my nephew snuck out in the wee small hours to drive back to QLD - about a 12 hour car trip. My plan is to reclaim the house following all the Christmas and New Year cheer and clutter and dust that has accumulated. THe annual clean out.

The aquisition of a desk has been great for Kit so I am hoping to turn the spare room into more of an 'office' for Hannah to share with me. She's had 2 weeks of no 'work' so it's time to clock back on. The learning support may have been on vacation but the health focus has been well and truly present. I don't know how long I can keep up the regime but it is really helping little brat at the moment. She has a 'colonised staph' infection that has been playing havoc with her skin and also expressed itself in some nasty boils last year - the regime is 3 months of antibiotics, twice daily face and nasal creams (one of which cost just over $100!!!!! - although I'm more worried about the 5 repeat scripts it came with - I hope we don't need those!!!). All washing has a disinfectant rinse in it and Hannah's wardrobe gets the hot water treatment.

Avisit to her paed provided some concern about her hips as her gait is quite stiff legged but hip xray was fine so we just have to keep at it - bike riding and walking her as much as we can to help her build up some stamina. She has a vitamin D deficiency and I am giving her a supplement each night for that. A visit to the dentist is priority for this month as her teeth have been affected a bit by that. The 'inevitable' thyroid issues have arisen so we have started her on meds for that which entails regular blood tests and really regular blood tests while the levels of medications are getting sorted. sigh. I'm hopeless at routines like that - lucky the holidays are making it all a bit more manageable.

Festivities in the Dock have included the following:
A home talent show that ended in some free dancing to Girls Just Wanna Have Fun.

 Some spanish dinners inspired by one of my Christmas gifts.

 Chorizo bread from My Barcelona Kitchen - delicious.

 Some backyard games including cricket and boules

 Just heading out and about.

 Fireworks from a suburban backyard where P and I were lucky to see the new year in with a wonderful group of families from the twins school.

 A late afternoon swim for Hannah and I

 A happy ole poodle with her pack never far away.

 Some holiday reading for me.

 A visit or two to the local park.

 I have lost count of the number of photos of Hannah like this I have - from since she was just a little bub to just this week..... love them all .... cos her face is just a picture.

 A sampler of Hannah's Christmas gifts from Santa: