Class 3/4 S - Top Ten

In Missy's class during the last week of school, the teacher gave the kids a survey, they were asked to write down the top ten things learnt this year. All the results were collated together and out come the top ten, I wasn't really surprised to hear that learning sign language rated in the top ten.
So a group of 8-10yr girls and boys think that learning sign language was pretty cool, an excellent example of how willing kids are to learn from others, and most importantly learn there is more than one way to communicate.
You never know but some of these kids might go on to be sign language teachers, translators or just give the next person they meet with communication difficulties, the respect they deserve.
Pictures show Missy's sign for "Oh-No" and "girl", these signs form part of a chart that hangs in each classroom, so kids/tachers can refer to it.

Santas coming to town...

The above photo is taken at a work party where a Santa visits the kids to throw lollies and hand out presents. This Santa has seen Missy over the years, crying and basically being terrified of him with just a little improvement each year. We were asked my a good friend of Santas, that Santa wanted a photo taken with Missy this year. We asked Missy and with some reservations she agreed.
H-Ho was also very excited and shortly after Santa got off the Fire engine truck we were lucky to have the our local paper's photographer on hand to take this happy snap.
By the end of the event, Missy was driving off to the fire truck wildly waving goodbye.
At last, she has been keen to see Santa at every occasion since then including Missy & H-Ho talking about sleeping on the lounge Christmas eve to catch a glimpse of Santa.

School Gossip

The end of the school year brings lots of exciting events, high on Missy's priority is the school disco.
We rush home from school, grab a bite to eat and race back to school for the start. Missy cruises in her powerchair to spot her friends, not that it takes long, they come running, checking out each others outfits... she quickly signs for the walker, strapped in, she is off dancing with her mates, usually in the loudest spot available. Missy dances all night in her walker, with no regard for sore feet, tired legs and perspiration.
Ever since she went to her first school disco in Kindergarten, she was the last one standing at the end of the disco.
Her love for loud music and dancing with her mates has never waived over the years.
Recently Missy's school grounds was swamped by heavy rain and the entrance to her classroom had a significant flow of water going past the entrance, so Missy's friends decided to take their shoes and socks off to walk thru to get to their classroom. Of course Missy will be a part of everything and she proceeded to take her shoes and socks off with some help. If I could paint the picture, Missy is in her powerchair with no shoes and socks ready to cross the water with her friends and off she drives thru the water, her feet nowhere near the water but hey...it could have splashed. That's Missy just being one of the kids.

The School Excursion

The big 3 day Sydney Excursion was a fantastic experience for Missy.
All the planning by everyone certainly paid off, with everything running to plan pretty well. They headed off early from School at 7am travelling to Sydney , the three days were filled with many tourist attractions like the powerhouse museum, Australian museum, Sydney Aquarium, Wildlife World, Ferry ride to Manly, visited the Collaroy beach, scenic world at Katoomba with lots fun stuff like ten pin bowling and rock climbing. Missy of course, enjoyed every attraction and activity to her fullest alongside her peers. For Missy the biggest bonus for this excursion was having her powerchair on the excursion, the school had hired a small trailer to accompany the coach so Missy's powerchair and numerous other pieces of equipment(see above photo) could be stored. We recently purchased a portable ramp and it worked well with the trailer, along with having a bus driver that soon learned how to drive and operate Missy's powerchair. Having a trailer on a coach manoeuvring around Sydney brings it's challenges and many times the driver parked out on the road, used the ramps to get her chair off the trailer and then again to get up gutters. When Missy has her powerchair it brings her so many choices and independence to explore attractions and hang with who she wants.
All venues and timetabling was organised by the teachers to ensure wheelchair accessibility and that toilets were available for Missy are appropriate times, all the venues were good except one that didn't quite live up to it's standard.
Miss H and another Aide went with Missy on the excursion and my concerns about maybe she will get homesick were soon squashed as she expressed she didn't want the excursion to end. She shared a room with her best mates and lots of giggling went on.
By Friday afternoon the excursion was drawing to an end and the long trip on the coach was well underway... Missy sitting on the back seat was perfecting her skills of knuckle sandwiches and wet willies with her classmates.
What a wonderful experience for her, to be so well supported by school staff to ensure her full inclusion, to be able to enjoy all that her classmates did, and as a parent feel confident that she is safe and having the best time possible. I was so proud of Missy's stamina and maturity, that at the age of 8 she was confident going on a 3 day excursion.
Looking forward to another big excursion next year.

New Steps

Missy and I recently returned from another ABR Clinic at Eastern Creek NSW, where we had our assessments/photos taken, workshop and 2 training session.
We had felt we had reached a bit of a plataeu with Missy's phsyical development but when taking the photos at the assessment, Missy did the best walking I have ever seen her do. She had slowed down, had a great length of step on both legs and was incorporating her knee and upper body in a close to natural gait pattern with my support at her waist. We had mentioned to Leonid and ABR Asia about the increased crouch position of Missy's attempts at walking, which was explained that as the pelvis capabilities improve the weakness of her knees are more exposed. Well over the last couple of weeks Missy is really experimenting with her knees and has now got greater control of them and is really using them postively in her walking. She is so proud of her walking and wants to show everyone that comes to our house, you can see that she feels like the shackles have been broken and she can step out.
I will endeavour to post some photos.

Powerchair decisions

Well, there is so much to blog about and not enough hours in the day. My computer has been having issues, like shutting down whenever it feels like it. So I am now on Missy's Dynavox, great now that they are also a computer as well as an AAC device.
Anyway back to the powerchair decisions, there is so much to consider, we narrowed it down pretty quickly by making the vertical lift and mid wheel range as necessities. Trying to have powerchair that suits all our requirements is really impossible. We needed the chair to have a tight turning circle yet be able to handle the rough terrain outside.
So we had narrowed it down to the Quickie Rhythm http://www.sunrisemedical.com/products/product_detail.jsp?FOLDER%3C%3Efolder_id=2534374302127931&PRODUCT%3C%3Eprd_id=845524447440969&ASSORTMENT%3C%3East_id=1408474395285139&bmUID=1201631831443
and the Magic Frontier http://www.magicmobility.com.au/frontier-x5 the video of the frontier looks great along with Extreme X8 which is a 4WD, amazing video footage of it's capabilities. While the Frontier toughest looks great its is about4 inches longer than the Rhythm which can really count in the classroom and our little house.
To add to the decision a new Glide powerchair is coming out which from talking to a number of reps will be superior to most chairs on the market in particular in the way it suits a variety of terrains and great durability. This chair should be out in February 2011.
It's just not a decision on the wheelchair base, but we had to choose and trial various seating systems, controller options, tilt options and the many accessories that are needed to complete the setup.
The Quickie Rhythm with all the accessories came in at $27,000 - wow!!!!!
Obviously we will putting in an application(with the help from our OT at The Spastic Centre) to Enable for assistance, who knows what they will say and how long it will take.

over 3000 hits

Hello
It's hard to believe Missy's CP Journey Blog has now had over 3000 hits and it's just been 12months since we started it.
Thanks to everyone who has followed Missy's Journey so far via this blog, I was hoping it is a way to stay in touch with others, share ideas, be inspired, share in celebrating Missy's life.
Stayed tune, I will write about Missy's fantastic school excursion.
Off to ABR Clinic in a few days.
Cheers

Excursion Excitement building

Missy is very excited about her school excursion next week. Not just a day excursion but a three day, two night excursion to Sydney with 44 other kids from Year 3 and 4 in her mainstream school.

Planning started for this excursion in Term 1 ,with our school being more than helpful and willing to ensure the Missy has a fully inclusive experience. There was never really a question of whether Missy will be going on the excursion, Missy and us just expected that she would be part of anything her classmates are doing. Our School has certainly accommodated this expectation with enthusiasm.
School planning to date has included two aides being available on the excursion, a trailer to accompany the bus to carry Missy's powerchair and other equipment, all venues accessible, toilet facilities available at appropriate times, activities can be accommodating (including rock climbing),beach wheelchair booked, meals are suitable, and sleeping arrangements.
Of course with all this planning comes the thought of what if she gets homesick, so I started checking the mood and confidence about the excursion, asking "maybe one of us need to come to make sure you don't get up to any mischief" this meet with the forearms making a cross for "NO DEAL", so at the moment she is full of confidence and can't wait to be part of the bus trip, sight seeing, giggling and most importantly just hanging with your mates 24hours a day.
Big week to come, I will keep you posted...

The Powerchair Search

We have started the process of finding Missy a new powerchair, she has had her Roller Rad with MAG seating system for five years now and it's worn out along with being to small. The technology, design and features available in powerchairs have certainly changed over the last five years.
Next week we meet with 5 suppliers who will be in our area to look at 14 different chairs that maybe suitable for Missy. We are currently on the books with the Spastic Centre (soon to be called Cerebral Palsy Alliance - much better)and our OT will be assisting us especially with the all important application for funding, expecting the chair to cost around 20K.
Biggest decision for us will be which wheel drive base to choose, our current RAD is rear wheel drive,as Missy drives over allot of rough ground around home. We will also be trialling the mid wheel range which will give a tighter turning circle, more suitable for the classroom and shops.
Missy powerchair has been incredibly important to Missy's life, it provides choices and a level of independence particularly socially, in sport, in the classroom, and out in the community. Missy can choose who she wants to hang out with in the playground or what conversation/group she wants to leave if she is bored - very important. Since Missy started with the powerchair at school, I believe she is perceived differently, she is a kid in control of own wishes, an active kid able to carry out tasks and a very responsible driver.
If I take myself back to when Missy first got her powerchair at 4 yrs of age , I was very nervous and had my doubts as to how proficient she would become at driving. Of course Missy always works hard at tasks and now is a very good safe driver.
It's wonderful that the technology continues to expand and there is so many options available to allow kids to take some control over their lives.