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.

Carcoar Cup Running Festival

In it's second year the Carcoar Cup has  doubled in entries and is a great social get together although many people put many hours of training into their run.
Us, well the kids are there to have a bit of fun and run in the Kids Cup. With 62 runners this year, H-Ho came in 39th and left her mother behind at the finish, who was only running the last 500 m with her anyway.
Missy dumped Mum as her running partner this year based on last year's performance - too slow. Dad was the choice this year and he had no worries keeping up with Missy's driving as fast as her chair would go in 4th gear. Missy came in 50th and enjoyed rounding up the kids as they tired towards the end, she gets so excited when she comes around the last bend towards the finish line and the Race Commentator is on the loud speaker saying her name.
Prime News filmed some of the race and if you go the link below you will see Missy coming across the finish line at the end of the video.
http://au.prime7.yahoo.com/n3/video/watch/c9479be3_1373_36b4_b45a_ff3e6e964273/carcoar-cup/

Kids Cup Entrants with their finishing medals.

Canberra/Thredbo Excursion

Recently Missy went on another annual 3 day excursion with school, this year they went to Canberra. On the first day, they saw Parliament House(very boring - was the report there), Capital Exhibition, Questacon(great report there) they then travelled to Cooma for the night and got prepared for their day on the snow at Thredbo. Day 2 saw them head off for a great day in the very snowy conditions, we had joined Missy up to the Disabled Wintersport Association, so she could have a sit ski lesson while the other kids had there lesson alongside her. Of course Missy's fearless attitude to speedy sports put her in good stead for a fun day. The 50 kids arrived back to Cooma after a full day on the snow fields - wet and tired. Day 3 saw them head back to Canberra via the Snowy Hydro Scheme and the AIS and were home by 5.30pm.
Missy said it was the best excursion yet, it was full-on packed of venues to see, learn and have fun at. Lots of organising goes into these excursions and our family always appreciates the teachers and aide that help pre-organise as much as possible and of course their effort throughout the excursion. Missy took three types of chairs with her, a couple of ramps for those unexpected steps, her gear filled up one whole bay under the bus while the other 49 kids had two bays under the bus.
A real special touch after this excursion was a DVD that her teacher had made for all the kids, which was packed with photos of their adventures.

These wonderful inclusive school excursions just provide such awesome peer group experiences and lifelong memories.

Anything can be adapted with some initiative

The video shown here is a snippet of Friday sport at Missy's Mainstream school on a snowy day.  Sit down Soccer is chosen at the indoor sport where the kids sit on their bottom and scoot around the floor to kick & pass to score goals.  While the kids are on the floor, Missy is still up in her chair and wants to be on the floor with the kids, the surface is too hard for her to sit unaided and moving around would be difficult. So  out comes some inclusive initiative headed up by her Aide Miss H. Her teacher's jumper is put on the polished floor, a large sports container is put on that, the kids throw their jumpers in the container and Missy sits in, a rope is thrown around the container and off she goes, one kid pulling at the front and another pushing at the back, all the time Missy is wildly kicking her legs just waiting for that soccer ball to come her way.
Inclusion is not expensive or hard just requires some thinking outside the box or in this case inside the box.

Week 1,2,3,4 of Taz's Tricks



Week 1, we taught Taz how to shake hands

 



Week 2 Taz  learnt to go and get her lead.









Week 3 we taught her to pull the door open

 



Week 4 - we didn't teach Taz this she figured out how to get the bin over all by herself.

 











Taz - Missy says "She is the best thing ever in her life"




 Well what a busy week we have had, with a school disco, musical performance night, where Missy did a group dance and H-Ho sang in the choir. Of course the highlight of the week was taking Taz to school for special news. Everyone that knows Missy at school(thats 220 kids) knew she had been waiting on her dog to arrive, so they were really excited for her to show Taz off. Taz handled all the kids really well ,  displaying her skills and beautiful nature.

Taz at the Park

Taz - our precious gift from the Guide Dogs

If you follow this blog you will know Missy has been waiting, not so patiently for her Pets as Therapy dog from the Guide Dogs for over a year.

We were thrilled to get the call to say they think they have found a dog that may suit Missy and us. Taz (short from Topaz) arrived nearly two weeks ago and we all love her to bits. She settled in really well and it's quite a change for us to have a dog in the house. Missy and H-Ho just can't get enough of her.  You wouldn't know that Missy had a real fear of dogs as a younger girl, as now she just loves to lay over Taz, cuddle her tightly so she can't get away, hold her lead, sit on the floor with her, pat her, knock off food by accident from her table to the floor, knowing Taz will do the rounds of the floor. Missy loves to have Taz come in the morning and raise her paws on the side of her bed. You can see in the photo that we quickly taught Taz to step up onto Missy's footplate, so she can get more cuddles while she is in her chair. Tonight Missy drove into the lounge room, swung her legs off the footplate, pointed down to the footplate and Taz just took the cue, walked over and jumped up for pats.
Taz is quick learner and the kids love teaching her new tricks, the first week, we got her shaking hands and this week she has learnt to go and get her lead and bring it to us.
Taz is 15 mths old and comes to us from the Guide Dogs, she was raised by a devoted puppy raising family in Sydney for which we are very grateful, she has wonderful eating manners, has all the basic obedience training, has vast travel/adventures experience and is wonderfully toilet trained. Taz came with a letter and many photos from her puppy raising family showing her growing up.

We feel very lucky to be given Taz and we really appreciate the time and love puppy raisers give to their young dogs and the wonderful work Guide Dogs do for the vision impaired and many others with disabilities, all done without any government support/funding.

Technology Set Up

Recently another Mum asked for some photos of our technology set-up in the classroom. So I have managed to do a short video in the classroom of Missy using her technology. I will attempt to break it down bit by bit. Missy is using direct access with a 40hole keyguard on her Dynavox V-Max, which is sending by infrared (using an Access It)words/number etc to the Laptop which is showing a scanned copy of the worksheet the class is working on. We use PDF Converter Professional to provide a platform to make scanned work, interactive by having text boxes and the like in the right place for answers and ease of tabbing thru questions, also writing some notes on the scanned copy showing on the laptop. Also on this video Missy is showing Text Help Read & Write Gold software that offers word prediction (amongst other features)in the blue box on the laptop, so she can shortcut words by pressing an "F button" for the word she sees instead of typing it completely.
Missy's I-Pad is not showing in the video but it is also mounted to the side of the Dynavox on the steel bar. It used for a number of visual aids, photos are taken of the teachers board which may have the instructions or key words for  writing activities, so that they can be close and at the same eye focus range, these shortcuts can help with fatigue and focus. The I-Pad is also used as an ideas chalkboard, so for a writing piece she would pick her key words or story line on the Dynavox , it's hand written on  the chalkboard app and Missy will write her story on the Dynavox but be able to stay focused on her ideas.
We use the set-up for some Maths work also, workings can be done on I-pad and entering answers on the Laptop via the Dynavox. Allot of photos are also taken of references materials(ie. Time tables) that may be around the room, so Missy then has a reference bank that is acccesibile for her with a swipe. We are lucky to have a teachers aid who is techno savy and can quickly make teachers spontaneous activities accessibility.

During meals and playground time in the school grounds Missy uses a Lingo, (lower tech) small device with eight buttons, pre-recorded voice output, for quick easy questions or news, it has some velcro on the back and can be put on the table or her pommel.

Masterchef - Meeting a Star

I know it's on the side but I tried everything and it appears portrait on my computer until you post it somewhere - anyway with the portability of devices these days shouldn't be hard to spin your device.
Missy has been obsessed with the Masterchef TV series, so when she heard about cooking classes for kids with Kate Bracks on the radio travelling to school one day, she couldn't sign fast enough that she wanted to be a part of that.
So with phone call or two to confirm access (of course) she was booked in. Missy had a chat with Kate before her class came in and she had a lovely time cooking some yummy goodies. She couldn't wait to get back to school and tell her friends about and just this week at Book Week(themed Champions), Missy went as Kate (2011 Masterchef winner).

The Ukulele

Over the years the music curriculum at school has been challenging for Missy with recorder and wind like instruments being nearly impossible.

So Missy was excited to have Ukulele this year with the bonus of being able to choose pink. Of course the best thing about Ukulele for Missy is that it doesn't require her mouth, so she can sing along in her loudest voice, while strumming the Ukulele - although sometimes she is so consumed with singing she  forgets to strum. Miss H plays the cords, while Missy strums and the duo will be part of the Stage 3 Eisteddfod next month.

Back to school

July has brought us some sickness with the kids having 3 week break instead of 2 and it continues with other family members with a persistent cough in our house. Missy couldn't wait to get back to school and spend time with her friends. In the holidays she had a great day out with three friends shopping, she came home with a new wardrobe , no money left but they are planning on a shopping trip each school holidays. On return to school the girls soccer team was announced and unfortunately Missy didn't make the team which she was cranky about but took it in her stride and will continue to trying out for sporting teams. In regards to the previous post about Missy's arms she continues to improve with the use of her hands and this week has done some much improved handwriting, which she is very excited about, it is that one skill that she has never given up on and it's great to see her reap some rewards.

ABR Faith

Back in a post in May, I mentioned the changes in Missy's arm, shoulder and hand functions. These negative changes in Missy's function brought some very dark days for me especially and but of course huge frustration for Missy.

With the mainstream therapy options, offering very little for Missy’s Dystonic CP Rehab, we have been doing ABR for 6 years now, and obviously have a lot of faith in Leonid Blyum's ABR Therapy:

'The objective of ABR is to restore proper tone to the smooth muscles/internal myofascia, which in a cascade effect restores proportions and alignment of the skeleton. During this process, the muscle tone is normalized and the arms and legs develop increasing muscle mass, normal range of mobility, and finally: sufficient strength - so that the children can develop their movements in normal spontaneous ways'


We have been focused of Missy's arms and shoulders for the last two years in particular and have seen the ABR techniques change and evolve of the years with the recent upgrades to the ABR Techniques // TransFascial Viscoelastic Applications proving really powerful.

In May, after working around Missy's elbows and between her shoulder blade and C7 for a couple of months we saw Missy arm function become more difficult and started getting locked in arm positions and the more she tried the harder it got. I took a short video of Missy struggling and sent it to Leonid for his advice; a quick and detailed response came back. Leonid explained the changes happening and while the negative outcomes seemed frustrating, he could see some positive changes and assured us we would get pass this and assigned us some new target areas.

Supported by ABR Asia- Sarah we got stuck into our new exercises, all the time answering questions from the on-lookers in Missy’s life – why is this happening? Will this get worse? When will we see an improvement?

I tried to remain focused and determined that we would get back on track with Missy’s function but while I tried to get rack up our ABR hours, we had to look at ways around Missy’s frustration, so the Eye Gaze System and Missy’s teachers aid – Miss H came to the fore with working around making the school curriculum accessible. Missy’s friends were quick to adapt as usual, picking up the eye gaze chart to get Missy’s answers.

Last week after about 50 targeted hours we could see the positive changes coming back into Missy’s function; her arms were coming forward easier with increased controlled direction and the re-emergence of the pointer finger. Missy would look at me, smile and sign my arms are good, her relief and excitement was so encouraging. She is very keen to get on the floor now and crawl, feeling more strength and control over her body, this is something she hasn’t wanted to do in 12 months.

So just as Leonid prediction we are now in a good place with hopefully more arm and hand function to come for Missy.

Thank goodness for ABR and Leonid Blyum.