Oh it's been so long

Sorry I haven't posted for so long, life gets in the way of writing sometimes.
Well back into Term 3 for school in a big Year for Missy. Term 4 will bring the excitement of a week long excursion and many end of Primary school events. Transition Planning is going well for High School so far with two lifts installed, ramps and door way widen, science lab tables and parking sorted, just getting the plans for the bathroom renovations finalised to hopefully be carried out in  he Christmas holidays .
The last couple of months has seen us trialing many pieces of equipment that are needed over the next 6 months,  ie. manual chair outgrown, shower chair outgrown, toilet chair unsuitable and upgrade of communication device. They all seem to come at once with Missy continuing to be healthy and growing out of equipment every few years.

A Morning cuddle with Taz

School Anzac March

More than a badge.....

Missy showing off her badge

Recently our school decided on Student Representative Council Members for 2013. Each class voted for their own boy and girl representative in a secret ballot after speeches are given. The Objective of the SRC is to help make their school the best it can be, organise events and be available and approachable to other students and take forward their ideas and feedback to and from SRC meetings.

So what a wonderful honour it was for Missy to be voted by her peers to be their representative.

The school had a special Leaders Induction Day recently where School Captions/prefects and SRC Members, took the pledge, were presented to our local Mayor and parents pinned on their child badge in front of the school. It was a lovely morning assembly and I couldn’t but help have a deeper appreciation of just how exciting and rewarding it was, in our quest for an inclusive life for Missy in a Mainstream school.

Mum, Missy and our Mayor at  the SRC Presentation

To be chosen by your peers to be the “go to person” with ideas and be responsible to report back to class, shows their respect and trust. Their choice showed normality and a total disregard for her disability particularly her alternative ways of communicating. Most of the kids have been with Missy for 6 years and she is seen by them as a valued member of the class.

Missy and Miss H

It would seem to be no big deal and of course, Missy should be regarded as a valuable member of her Year but as many families would know attending a mainstream school and striving for an inclusive life can be a very rewarding but sometimes difficult journey.

I’d like to  think it will be her Year 6  peers, who will be the kids who smile and engage with others who have  a disability, show them the same respect and not be one of those kids who trip over while they walk and stare. Those same peers could be future teachers who have an appreciation of accessible curriculum, a store owner who makes their shop accessible and generally have a greater empathy to others.

 Congratulations Missy and well deserved.

Taz's Antics

Taz is such a big part of everyone life particularly Missy. The photos include Taz at the local show in the look alike class

  Taz with ribbons 1st in Best Biscuit Catcher and 2nd Best Dressed (Masterchef Outfit)

 Hanging out at night watching TV while Taz sleeps anywhere she likes

 In the buggy with Missy

Waiting with H-Ho for Missy to come back from sailing

Missy and H-Ho enjoyed watching the Agility trial dogs at the Easter Show and they hope to get Taz involved with something like that.

Sydney Royal Easter Show

Sticking to our annual tradition of attending the Sydney Royal Easter Show, we made the trip again.
We stopped over the night before close to the showground, so we could get to the show early in the morning, after a fun filled 10 hour day we drove home. Here are some of the highlights.

Settling into Year 6

Well, Term 1 is getting away from us. Missy has started the school year well with the same male teacher as last year which is huge blessing.With each new teacher in the previous 5 years it's taken a couple of terms for them to get their head around Missy's technology and alternate ways of learning.
So with the same Teacher, Miss H continuing to be Missy's aid and all Year 6 in the one class this year, it's sure to be a great final year at  Primary School. A week long excursion is planned for Term 3 which will be a highlight.
We continue to have meetings at our Local High School to go over property issues that they are working on and technology that needs to be available. Year 6 will have four days of visiting the High School this year which we hope will iron out any issues that may arise next year. We are fortunate to have a great School Counsellor based at the High School who is making the transition planning a  really positive experience.
We've had a numerous trip to Sydney in February for yearly check ups at the CP Clinic - Sydney Children's Hospital, an ABR Clinic at Parramatta, the eye specialist at Epping.
 April will see us go to Sydney again with an overview of Missy's Communication setup, as we are currently trialling an Eco2 device and using two switches in the morning with Missy's feet and the afternoon(when her arms are more free) she uses her hands on two switches or direct touch.
So lots going at the moment and I can't see the year slowing down at all.

Thank You Ronald McDonald Family Retreats

In January we travelled to Forster to spend a week at the Ronald McDonald Family Retreat. We rarely take holidays as it's difficult to get away from the farm. Thankfully a friend came to stay and take care of our stock and most importantly Taz's puppy raising family offered to take her back for any holidays.
Ronald McDonald Charities last year offered Starlight families access to their retreats, which I noticed had two locations with wheelchair access, so with many friends who holiday at Forster, we thought we would jump at the chance to try it out.
We weren't disappointed with a fantastic wheelchair accessible cabin right on the marina, easily walking distance to shops, beach wheelchair, parking spots, friendly people, lovely beach and great weather. The day we drove home was when all the rain came up north.
The first night there was tears from Missy about missing Taz but she got pass that until the last day when she couldn't wait to pick her up on the way home.
I'll let the photos tell the story of our fantastic holiday.

The Miracle of Unbroken sleep

At our last ABR Clinic in Sept 2012 we were offered the trial of a new product developed by Advanced Biomechanical Rehabilitation  founder Leonid Blyum.
BioEQ Gel - Bio Equalizer contains all natural ingredients that facilitate microcirculation at both the superficial and deeper skin layers. It's applied daily to Missy's face and ABR wanted us to use it  for 3 months and report changes.
After 6 weeks of using the BioEQ Gel Missy started sleeping thru the night, I couldn't believe it when I woke in the mornings to realize I hadn't been up 3 times. So from November this improved sleep pattern has remained with usually only one night a week that she wakes. Prior to the BioEQ Gel Missy would wake up about 3 times between 12-6am each night for re-positioning.
Recently we started  using the Gel in the morning also and we can start to see a reduction in the amount of dribbling.

For 10 years I've had broken sleep and I'm over the moon that she has suddenly improved since using the BioEQ Gel.
The balls and eggs in the picture are ABR Tools with varying consistence that we use in a number of precise areas as prescribed by Leonid Blyum.

Student Leadership Speech

I've been missing in action for a little while, I had computer problems prior to Christmas and then well... it's end of school madness followed by Christmas madness.
Towards the end of each School Year, interested Year 5 students put their hand up for nomination as Student Leaders in 2013. A large portion of Year 5 decided to nomination including Missy. After working on her speech for some time, Missy was excited and nervous to present her speech to the entire school and parents.
Missy did a wonderful job, precisely driving on stage, looking confident(although I could see the nervous tension in her movements), she presented her speech via the I Pad with an external speaker to the Microphone. Missy worked the room beautifully, smiling left and right as her speech flipped thru the pages, she talked about her "have a go" attitude and how she would encourage others. Her speech finished with a wonderful round of applause from the audience and one proud mum.
It was a wonderful experience to share with her peers, the nervous build up of speech day and the relief they all felt, when it was over. Missy told me she didn't vote for herself but for another girl who was having a go.
Missy missed out on getting a leadership role next year but as always, was so genuinely pleased for her close friends who got the positions.

2013 Year 6 , where has the time gone?

Everyone needs a friend to lean on

Missy looks forward to her floor time every night with Taz after dinner. Tonight Taz fell asleep on the floor near Missy while she was crawling around. I heard a thud and turned around to find Missy had fallen down(which she does a bit) but this time onto Taz, exactly where this picture(above) was taken. Taz opened her eyes, looked who it was and went back to sleep... Ain't Love Grand.