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.