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.

Waiting for the PAT Dog.

Missy continues to wait - not so patiently any more - for her PAT Dog from Guide Dogs NSW. Every day she asks when will it come and when the phone rings, she asks who was that, hoping it's Guide Dogs to tell her dog is coming. Missy has bought the Schmackos and the lead and is more then ready to take on a dog she can look after, take for walks, pat, hug and just love to bits.
It's a very hard situation as I can't really tell her when it might be coming as they have to wait for the right dog to come along, she has been on the waiting list for 12 months now and Guide Dog NSW say it can be 12-18 months on the waiting list. Missy would cry once a week, saying she doesn't want to wait any longer and why can't they just ring...
Gee... I hope they ring soon....hate having things upset her that are out of our control.

10,000 hits...wow

Hi,
It was fabulous to see 10,000 hits turn over this week on Missy'ss CP Journey Blog.
Thanks You to everyone who vists the blog including the 20% from overseas and those who leave wonderful messages.
 I know many family and friends use the blog as a way to keep up to date with what is happening with us. Hoping we have shared an insight into Missy's life  and just how there is always another way of doing something if you want to.

Athletics Carnival

Another fine day with a crisp wind was the order of the day for our School Carnival. I have never been to other school carnivals but I'm always impressed by the friendship and support given to all athletes by their peers at our school. There is continued encouragement given to the stars of the athletic track but more importantly the kids struggling to finish their race, with older kids running on the track to encourage the younger kids who find out it's a long way around the oval when others have left you behind.
My kids love competing in the carnival, Missy particularly like the running races which she drives her chair in. This year Missy went in the 100m, 200, 800m races. She sits excitedly with her hand struggling to hold on to the joystick and waiting for her startle reflex to go off when the starter's gun goes. After that Missy will shove her joystick with her hardest pressure to ensure maximum speed in Gear 4, she will have total concentration but still smiling, when races get close Missy will start to move her legs in a running movement  to assist the chair in top speed.
H-Ho also had a great day, running in the 50m, 400m, and being picked for house team relay.

Everyone had a great day and my kids look forward to hearing  if their yellow house were the Carnival winners.

 

Eye Gaze, Naplan and Catch Up

Sorry It's been a while since I blogged. There has been lots going on.
Not long ago Missy sat her Naplan tests, these are National Literacy and Numeracy Assessments for school kids in year 3, 5,7,9. There were four tests all up, done over three days, Missy did them in Year 3 also, when she was one of the first students to make use of the then, new PDF Interactive Test File.
This year she also accessed the PDF version of the tests on her Laptop, along with her Dynavox via the Infared Access It, also the I Pad and eye gaze charts.
Currently Missy is going thru some structural changes from her ABR Therapy and a growth spurt and while it shows she has an improvement in her structure it doesn't always bring improved function immediately(I will blog about this another time). So since she has been struggling with the use of her arms and hands, we have been expanding her use of eye gaze charts. Hopefully the picture shows how a number of forms of communications/technology can be used to get answers onto a test . Eye Gaze can be time consuming but at the moment without that Missy would be very frustrated by just trying to use her Dynavox.
We will continue to give feedback to Naplan Authorities about the need to provide a variety of adaptions of materials, testing conditions and accessibility of the test.

I was very proud of Missy efforts in the Naplan test, she showed great concentration and determination to get thru all the tests.

The smile that hides.......

Every morning missy awakes with a smile ready to face the day whatever it may bring. She eagerly drives into school and loves to find her friends, loves to do her school work, loves to interact, loves and must have a go at everything her peers are doing. Missy smiles at almost everyone and everything, her smile can light up your day, the room, her eyes squint and happy lines appear over her face. It’s a smile that engages people and allows conversation to flow with the help of a communication device.

It’s only those very close to her who see the daily frustration of having a body that doesn’t do as it’s told. Every single movement takes such concentration and even with total concentration on controlling her muscles; still so many things are extremely difficult. She has many tears about the restrictions that her muscles put on her ability for independence, for communication, for feeding, for school work, for handwriting amongst other things.

Missy will grit her teeth, stomp her feet and try to express her anger and frustration, as a parent it’s the hardest thing to watch, knowing there is little I can do but to offer alternate ways of doing things and validate her feelings are understandable.

But really not many people can truly empathize with Missy’s feelings of frustration of having a body that wants to inhibit your determination, motivation, intelligence and communication.

I can’t remember ever doing a negative post on this blog, so I will switch to the positive side. Missy’s will to be included in everything drives us to concentrate on equipment and areas we can change or raise awareness about. Physical Access is a huge area that impacts us all as a family, if we can’t get thru the front door, we don’t shop there. I work with our local Council on an Access Advisory Committee and try to give some real life experiences and knowledge but it’s a long road. Missy has enough frustrations in her life without arriving to an event or shop to find it has steps or she can’t fit inside or turn around. STAIRS SUCK, RAMP IT UP !!!!!

Show time again

We had a nice Easter, with the house still covered in chocolate. Once again we made the trip to Sydney Royal Easter Show, this time we had no animals in show, which made it an easier trip.
We stayed the night before, close to the show and arrived at the Show by 9am, went straight to the rides so we didn't have to hear about when we were going there all day. They chose the Super Slide and Missy went on the Roller Coaster, while H-HO chose the slower log ride.
Next we had to check out the Poultry, where we caught up with fellow poultry fanciers. A quick walk thru the sheep pavilion to the Big Top Amphitheatre to grab a seat for the circus show and Alvin the Chipmunk show.
Off to grab some food and we took a seat for Speckle Park Cattle judging, as the afternoon creeped on, the showbag questions started. We headed that direction admiring the art work and regional fruit & veg displays. The showbag pavilion appeared in front of us as we took a deep breath and headed into the pit of tired and cranky kids and parents, doing laps of the pavilion trying to decide on showbags. H-Ho held on tight to Missy's chair and we pushed our way- ever so politely thru the crowd. Our kids had pre-decided on their showbag, so it was pretty painless for us really. We left the show at 7pm with two tired kids but in good spirits ready for the long drive home arriving at 11pm.

Second Prize

Missy continues with her passion for art with an entry in the local show. Missy's painted gained second prize in the 8-12year section. The kids also entered horticultural creatures and H-Ho's chook won Champion Junior.

Swimming Carnival

Like the previous two years, Missy was keen to be part of the swimming carnival and increase the races she entered by one each year. So this year she swam her heart out in the Freestyle, Backstroke and Breastroke races. I've added a short video of her finishing a race with the crowd cheering her onto the finishing wall. Missy so enjoys the thrill of competitions, even if she isn't close to finishing with the others, she is excited by the opportunity to just be part of the carnival and swim in races with her friends. Who wants to sit on the sidelines?

Just a bit of rain

We were lucky to escape any real damage from the rain a few weeks back. The 5 inches rain we had actually fell nicely over five days. In the photos it shows a river near our entrance that flows to a huge dam, the water goes over the road on a low part of the road near the bridge and it closed the road for a day. The girls were checking the road and finding yabbies that were floating across it.

10th Birthday Celebrations

So much to catch up on this blog...

Back in February Missy celebrated her 10th Birthday, when I asked her what she would like for her Birthday, her reply was a "sleep over" no presents just a sleep over "yep" she said. She has never been a greedy kid or asks for lots of things.

So Missy had the difficult decision of picking just two friends for the sleep over. The excitement was building the days before and finally the night came, the evening was full of fun times, makeovers on each other, hairdo's , nail polish painting which had various effects with Missy landing more polish on her friends hands than nails, not that it worried them. Dinner and cake were devoured and time for a late night movie, followed by lots of giggling and then a little bit of sleep.

The morning bought more giggling, breakfast, tennis and motorbike rides.
Missy had a wonderful birthday, full of good food, goood times and good friends.

Getting into the swing

Where have the first few weeks of school gone?
Everyone is getting into the swing of things, Missy's new male teacher is getting his head around Missy's technology and adaptions to activities. It's a lot to take in, thankfully Miss H is there to guide each new teacher with what works best.
While Missys still uses her Dynavox V-Max for the majority of school work, the I-Pad2is increasily used as a reference manual, dictionary, thesaurus, camera, tables of information. We have also been using the Sound Note app on the I-Pad to record Missy's teachers explanation of concepts, which are proving really helpful at home for myself and Missy. She can replay the explanation over and over again, pause if necessary and everyone at home can be consistent with their explanations.

Back to School

Well, the school holidays are over and my kids are pretty pleased to be back, Missy especially. Missy is in Yr 5 and has a male teacher this year a first for her, she thinks he is great. H-HO is in Yr 1.
The girls had a great holiday with most things ticked off their wish list. I didn't get as much ABR done as I would of like, anyway we had fun.

Hitting the beach

Visiting the beach was on the Girls Holiday wish list, so we organised a trip to Collaroy Beach, booked the Beach Wheelchair and stayed the night before at Aunty K and hit the beach the following morning. We had a lovely day , enjoying the easy access to the beach, the surf and rock pool. Missy loved the beach wheelchair that goes easily over the sand and floats in the water, she loved going face first into the waves. H-Ho also loved the waves and has a boogie board on order for the next visit. We finished the day mid afternoon and started the long 5 hr drive home. We had a great day and will be sure to hit the beach again next summer.

Holiday Fun on a Gentle Giant

The girls were lucky enough to visit some friends nearby and have a ride on the Gentle Giant - Daisy. She is a beautiful Clydesdale mare 17.2hh and has had many kids on her back over her 20 year life. Daisy took a very slow pace as she knew there were some girls a little nervous on her big back . Missy's legs relaxed over time and she didn't want to get off.