Missy's CP Journey

Back to School

2012-02-05T21:30:00.002+11:00

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

2012-01-27T22:39:00.002+11:00

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

2012-01-24T21:52:00.002+11:00

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.

Anything you can do... I can do...

2011-12-30T21:56:00.002+11:00

The Photo shows Missy at her school Presentation Night doing the class dance performance. As you can see where there is a will, there is a way and Missy won't ever miss a chance to be on stage. The performance was to Penny Arcade and Missy was one of the hoop spinners(in between dance moves), she joined arms with one of her friends and they swung it to together. Great Performance.

Meeting Santa

2011-12-29T23:07:00.003+11:00

Girls had a great time meeting Santa at a Christmas Party. They talked about how they had been good and they asked him what he would like to eat and drink when he calls into our house.
It been busy time but the girls had a great Christmas time with many visitors. We are slowly working our way thru the list of holiday activities that the girls have stuck on the wall. One of the activites was going out for dinner, which I promised if they had good school reports. They actually had great reports and we were very pleased with the wonderful effort they both put into their school work.

Putting some wheels into the Running Festival

2011-12-21T23:30:00.003+11:00

There was much publicity and talk about the local village holding it's inaugural Running Festival. Missy had been talking about the Kids Cup Running race for months and that she was going in it along with H-Ho.
So with anything the planning started, checked with organiser about Missy participating - they were excited about her joining in, checked the course - should be accessible. Unfortunately one thing I forgot to check was if I(mum) could run the 1.8klm length of the race with her, we looked confident as Missy took off at the start in 4th gear on the new powerchair, we got to half way and mum was fading. Dad and H-Ho were in front of us and it didn't matter to Missy that she was at the back , she stayed focused on her driving and came home to great applause.
Great effort from my girls.

How persuasive are your writing skills?

2011-11-24T23:01:00.004+11:00

Missy's class have been participating in weekly pre2 Video Conference sessions with another class from a nearby school. This was aimed at improving the students persuasive writing skills through public speaking. Each week six students from each class would present a persuasive exposition on a topic of their choice. One person was chosen as the round winner and sent through to the finals.

Well Missy was chosen as a round winner by her peers and the other school and was very excited and a little nervous about the next round.
Missy's persuasive talk was about "Teachers should let kids dance everyday at school" she outlined the wonderful benefits of it by presenting her speech using her Dynavox V-Max accompanied by wonderful hand and arm actions to enforce her message.
As the morning arrived that Missy was to travel to the other school, she was signing she had butterflies and couldn't eat all her breakfast. She never looked back though and faced her nerves head on, she has actually scheduled to go first and presented her speech beautifully.

Missy was very pleased with herself and so she should be , it takes some courage getting up in front of people you don't know and present a speech on a communication device that others may not be familiar with.

The Artshow

2011-11-16T22:05:00.003+11:00

Missy's love of drawing and painting would consume every minute of every day if I let it but there is homework to do amongst other things.
Recently Missy's determination and passion for drawing was rewarded when her pastel landscape was selected to represent the school at a combined school Art Show.
Missy is proudly pictured at the Art Show in front of her picture.

I'm back

2011-11-08T22:05:00.004+11:00

Apologies it been a while since I blogged.
My computer crashed and was away for a while getting fixed, luckily all my information was saved.
We have had numerous appointments at home with the wheelchair technician to finalised Missy's new powerchair and it's still not finished. It will be great when it's finished and as we finalising the infrared, bluetooth capabilities and a few other bits and pieces, at least she is driving it and it is now going to school.
The kids think it's great how it goes up and down and the colour is very cool. So far we have the infrared control working the TV operated by the joystick and once we get a bluetooth adaptor for the Dynavox, the wheelchair joystick can control the Dynavox also.
Stayed tuned I still need to blog about the school excursion, the Carcoar Cup, Persuasive talk competition and a few other events.

Busy Times

2011-10-19T22:30:00.001+11:00

The new Glide Centro Powerchair has arrived and after a couple of hours adjusting and going over it with the technician and OT, it is nearly complete. Just waiting on a few parts to be sent out and some programming still needs doing. It goes on and goes but anyway we are getting there.Missy has headed off on her excursion today and she couldn't get on the bus quick enough while we packed all her stuff into the bus trailer. I'm sure she will have a great time doing canoeing, archery and grass skiing, there is not much she won't have a go at.Photos will follow soon.

Power Wheelchair delayed

2011-10-08T23:14:00.001+11:00

We are unfortunately still waiting for Missy's Wheelchair, we had another fitting of the new chair and it wasn't right with still a number of things that need changing. That was three weeks ago and we are still not sure when he will be back. Missy's old chair plays up every day and in the holidays the right motor had issues which we were very luckily a local technician came straight out and fixed. The electrics continue to play up daily and it now only two weeks until Missy's excursion, so I doubt the new chair will arrive before then, i just hope the old chair makes it thru the excursion for her. When you are so close to finally getting the new chair, I really have run out of patience and just want it now.

Home from a long day at the CP Clinic

2011-09-25T23:32:00.001+11:00

We travelled to Sydney for our yearly check up at the CP Clinic recently. Missy's hip x-rays we good and there has been no real change in them for the last three years, which is great. We caught up with the Physio, OT, Physchologist and Rehab Doctor all in one long day 9.30-4.30 in appointments and then it took 4.5 hours to drive home. As we have most projects under control or in action locally, the allied therapists just check up with us and take video of Kirrily's progress, which her walking seems more controlled and her writing at school is really improving. Writing and drawing is an area that Missy is very passionate about, she can spend hours practicing and over the years she has never given up on achieving the skill of writing. The Doctor has requested some blood tests and we asked what else we can do to assist Missy's physical development besides our ABR Therapy . We discussed Stem cell Therapy and Deep Brain Stimulation and have a referral to another group of movement disorder specialists.

It's all happening

2011-09-07T23:34:00.002+11:00

Well we have lots of projects on the go at the moment.
Last week we had the first fitting of Missy's new powerhcair, it looks great and hopefully will be worth the wait. It needed a bit more customisation so it had to go back with the supplier, but it will be back next week to stay. Just in the time actually as Missy old powerchair decided it had enough and the controller packed it in, thankfully I have been able to borrow a controller for a short period to hopefully get us through.

Soon we attend a CP Clinic in Sydney for our yearly check ups and X-Rays.

Missy has been doing swim school for two weeks now and is having a great time.

Missy's school excursion is approaching fast and her teacher and myself recently travelled to the camp venue to check out accessibility and plan for activities that everyone can enjoy. So with grass skiing and canoeing and sleeping in a room with another 8 girls, there is sure to be plenty of fun had.

I continue to struggle to find time to do ABR and keep upto date with Missy technology needs. Missy recently got an I-Pad which has been lots of fun for Missy and H-HO. We are hoping it will be a great reading tool, rather then Missy having difficultly turning the pages. There is so much more we can do with the I-Pad, once I get my head around it.

A dog for Missy

2011-09-01T00:01:00.002+11:00

Back in June we filled in an application for Missy to get a Pets as Therapy Dog from the Guide Dogs NSW.
Last week we had the interview at our house with a representative from the Guide Dogs NSW where we talked over the most suitable dog for Missy. So now Missy is official on the waiting list for a Labrador or Labrador/Retriever which could still take up to 12 months. We decided to go with a bigger dog that Missy could independently pat from her wheelchair and it would be easier to see while she drives around the house and outdoors. It will be lovely to see Missy have a pet that she can interact with independently.
It is a wonderful program the Guide Dogs NSW offer to people who can benefit from a real companion pet that is matched/trained to their need. Guide Dogs that don't quite suit the life of a guide dog are offered in the Pets as Therapy program where they can still offer so much companionship.
So we are very excited to be given the approval and now wait patiently for a dog to be matched to us.

Another ABR clinic

2011-08-29T23:15:00.005+11:00

Well we are home from another ABR Clinic where we learnt some new techniques that have shown some real positive effects on other kids.
The tools have changed over the years and I must say I like the latest tools we use, they are small, easy to grab and get a bit of ABR time in easily. We got three eggs shaped balls with varying degrees of softest of gel like material.
Our main focus for our new exercises is around the shoulder girdle, with C7/shoulder blade,Upper Thoracic and mid Thoracic we also have a black cylinder of quite firm density that we are working on her elbow anterior and posterior.

I mostly do my ABR therapy at night when Missy is suppose to be going to sleep, with some of the new exercises,she is actually falling to sleep...now I need to just stay awake.

Excursion on the horizon

2011-08-20T23:21:00.002+11:00

Another 3 day excursion is planned for Year 3/4 next term and Missy is pretty excited after last years excursion was such a hit.
This year they are going to a Sport & Recreation Camp at a Lake only about an hour away.
The school has booked the trailer again to carry Kirrily's powerchair and equipment and her teacher and I are going to visit the site to check out the finer details.
As usual nothing happens without plenty of planning, so Missy can just get on that bus and have a go at everything her peers do.

New Powerchair being built

2011-07-27T23:35:00.003+11:00

Back a few months ago, I blogged about the big decisions on Missy's new powerchair and how we had received funding approval for the majority of the chair except the vertical lift.
Well, we had to make the difficult decision if to go ahead with original order of a Quickie Rhythm or wait a couple of months for the new Glide Powerchair to arrive. We decided to wait to check out the new glide and thankfully it was the right decision we think. The Specialised Wheelchair company quickly brought up one of the first demo models for us to trial and it fits better in our van, it's suspension is better and is quieter to operate. So it is currently getting built and hopefully it should be ready in a few weeks.
We self funded the vertical lift option so hopefully we she will get increased independence opportunities once the new chair arrives, not before time as the old Roller RAD chair is falling apart along with the temperamental electrics.
It's been a long and tedious process but we can see the light at the end of the tunnel.

Very Pleasing School Report

2011-07-23T21:12:00.005+11:00

My girls had very pleasing school reports, and it was lovely their hard work is reflected in them.
Missy received 5 for effort in all subjects(5 being the maximise) this is always the most important area and it's great that considering the daily physical challenges that sucks the energy from Missy, she continues to put in a big effort.
Some lovely teachers comments were "Missy gives 100% effort in every area and never ceases to amaze me with her excellent achievements. It is wonderful to see and share with her a great sense of humour. She is a valued member of the class and shows empathy and concern for all her peers. Missy is an attentive listener in class and values all chances to engage in communication with her peers. Missy is gaining pleasing results in maths."
Missy's report also acknowledges the initiative and consistent effort that Miss H(her teachers aide) puts into everyday. While we are always appreciative of Miss H assistance in Missy's inclusiveness and helps provide opportunities to excel in the classroom, it is nice to see the teachers acknowledge the expertise that some Teachers aide can bring to the child's life.

ABR Clinic in August

2011-07-11T00:29:00.004+11:00

We will be attending another ABR Clinic in Sydney during August. After our last clinic in Nov 2010 we weren't planning to attend another until Nov 2011.
There has been some new ABR techniques added that have been proven to show great results. This is the greatest technical breakthrough that Leonid and his team have seen for the last ten years.
Leonid posted his blog about the egg and the pelvis transformation – which is of course fantastic to listen to: http://blyum.typepad.com/on_abr_and_beyond/2011/06/mind-blowing-freaking-miracle-pelvis-transformation-in-quadriplegic-cerebral-palsy.html the egg and the new ball rolling techniques are bringing a lot of very fast changes.
Even though our ABR hours are not fantastic, we may as well be using the most improved effective techniques with our time.
We have just completed our home video to send to Singapore and look forward to catching up with other families, Sarah and Jensen from ABR Asia at Sydney.

Miley comes to Sydney

2011-07-05T23:32:00.005+11:00

The fun hasn't stopped lately with our family going to the Miley Cyrus Concert last month. We were fortunate enough to have our local service provider financially assist us to attend the concert.
As with every outing lots of planning is involved, right from the start we hit obstacles with seating and being told we could only have one person sit with Missy and the other two in separate seating. So we told them that's not fair and not acceptable, and ended up been given two lots of two seats directly in front of each other...Ok
Off we headed for the 4 hour trip to Sydney in the truck(with the manual chair on the back) because our van won't fit in the car park. The girls listen to Miley the whole trip and had many of the songs memorized, as we entered the car park, Missy's excitement was boiling over and I think H-Ho couldn't believe the amount of people in one spot.
So after queueing at the merchandise store, the kids got their requests, H-HO a t-shirt and Missy a hat. Into find our seats and disappointment took over as Missy took her spot which was on a balcony with horizontal bars(who thought that was good idea doesn't use a wheelchair and hasn't tried to look under or stretch over a bar for 2 hours to see) and the other two seats which were suppose to be in front were not, so we called the supervisor. A very empathetic supervisor listened to our disappointment about we expected and this was not suitable, he quickly found other seats that were together and actually very close compared to where we were.
Settling into our new spacious seats, Missy was waving off the support singer to get Miley on. Missy didn't have to wait long and Miley was on stage,I don't think the girls could believe it but it didn't take them long to get up and dance. Missy stood up to dance, but also danced on my lap and in her chair, waving her arm and legs wildly while belting out the vocals.
Miley sang for 1 hour and 20 minutes and then said good-bye but with encouragement from the crowd, especially my girls she came back on to sing 3 great songs.
We all had a wonderful night and a night the girls will long remember.

Jump rope for Heart

2011-06-30T21:53:00.005+11:00

Each year Missy's school gets behind the Heart Foundation fundraising by getting sponsorship for skipping and holding a Skipathon. Some kids form small groups to enter the Talent Quest and each Year have a Jump Off or jump to you drop competition.
All the kids are so into skipping and their combined display is great to watch. Of course Missy wouldn't me left out of anything and with her mates they entered the Talent Quest(see photos). She also went in the "jump until you drop" for Year 4 , her excitement about competing is evident by her face that lights up and the extension of her arms and legs as she tries to move fast to drive her chair to be transferred.
Her efforts in the Talent Quest with her mates is cheered on by the whole school with great enthusiasm and it wouldn't be possible without Miss H getting in and having a go with her. As each year passes, Missy is getting taller which is helpful for jumping but also heavier, not so helpful.
Some photos show Missy skipping so hard she threw a shoe off and Miss H going the extra mile as she always does.

Little Sis - H-Ho turns 6

2011-06-27T23:39:00.004+11:00

H-Ho is growing up so fast and got a pony for her birthday. It was her last Christmas wish but Santa had trouble finding one suitable.
So "Sonny" has come to us from Taragla and is 11h gelding about 12 years old. We are guessing he is a Welsh x Shetland pony and is very quiet. The kids are really enjoying him riding each weekend. We are still very much learning about horses again as we were kids when we last had anything to do with horses.
H-Ho has started riding lessons and we will see how she goes.
At least Sonny has come from a similar climate as we have had a substantial snowfall since his arrival, while he has a great winter coat we have made him a stable.
H-Ho had small family gathering as we have the every second year rule for parties in our house.

Missy's Starlight Wish

2011-06-23T23:47:00.007+11:00

Our family was extremely lucky to have Missy's wish come true in May with a trip to the Theme Parks on the Gold Coast QLD.
Our Starlight Volunteer Laxman has been conversing with us for a number of months organising the trip to ensure everything was in order.
This made a real nice change for me, having someone else organise the many considerations our family has for transport/accommodation and attractions.
Our trip started with a Rex Airflight and the Rex staff were fantastic, then onto a JetStar trip to the Gold Coast. We were meet by our friendly hire van representative and shown the ropes for our hire van Kia Carnival which we drove to our accommodation at Miami Beach.
Each day we went to a Theme Park, starting with MovieWorld, we picked up Missy's good friend who left her school last year on the way and this was a real highlight for Missy to spend all day with her, share rides and laughs. Missy went on the Rollercoaster seven times and went on a scary log ride.
The next day we went to SeaWorld, which was lovely, although it rained most of the day, the kids enjoyed the animal displays and dolphin show.
The next day Laxman had organised a special treat for Missy, wetting her appetite for speed and the wind in her hair. Jet Boat Extreme were waiting for her, Michael the owner of the business came in to give our family our very own personal ride. It was fantastic, loads of 360's, fish tails and water sprays and Missy didn't want it to stop.
Our last day was spent at DreamWorld, with more rides and lots of fun. The crowds were really good and many rides we were able to just stay on and go again. Our last night was spent with relatives and the kids caught up with their cousin and enjoyed a lovely dinner.
The night was short as we had to wake the kids at 4am to get to the airport and catch the 6am flight. The kids were devastated when they woke up and realised that they really had to go home, both of them started crying. A problem free plane flight home finished a fantastic holiday.
Missy had the most wonderful time, she has loads of photos and memories.She took a powerpoint presentation to school and shared her wonderful times with the class.
We could never thank Starlight enough for this wonderful wish for Missy.
Starlight is such a wonderful organisation, so giving in generosity and compassion. If you ever have the opportunity to support this organisation I would really encourage you to, not only do they provide wishes for serious ill kids but also kids with disabilities.

Lots of catching up..

2011-06-19T00:23:00.003+11:00

I have been without a computer for a number of weeks now and I'm sorry for not keeping my blog up todate. I now have a new hard drive in my computer and hope no more problems come my way. So much has happened in the last month and over the next few days I plan to catch up.

Some May Snow

2011-05-12T23:31:00.000+11:00

They predicted the snow and it certainly came in last night, we awoke to a blanket of snow, it has been a number of years since we have had snow in May.
H-Ho was so excited about the snow, she soon grabbed the nearest coat (being mine) a beanie and headed outside to explore and make some snowmen.
Missy who is battle a cough at the moment I let sleep in and with the road being pretty ordinary I keep the kids at home today. Missy was happy just to look at what snow was left when she got up at 10am.

The Van - nearly all done

2011-05-12T22:48:00.000+11:00

Well, I have been blogging about it for a while now but we finally have our replacement van up and going.
Not without a few problems and us having to take it back again to Sydney to get the seats refitted. We still have a few auto electrical problems that we will be getting fixed soon.
VW Diesel is certainly more ecomocial than the Petrol Mercedes not to mention the considerable more torque is also has.
Its been a real busy time lately (whats new) our family has had 40th Birthday celebration. I did three trips to Sydney in 9 days and the coming month will continue to be jam packed.
The photo also shown above is at our local dam, where we've seen a 60% increase in it's water level which has allowed Sailability to get back on the water briefly before the end of the season.

Autumn Colours

2011-04-26T00:04:00.005+11:00

We have had the best Easter weather, cool nights but beautiful days.
While the school holidays have been busy and sometimes exhausting, today I stopped to appreciate the wonderful Autumn colours in the garden.

Anzac Day

2011-04-25T23:32:00.004+11:00

A very special day in Australian History today, it marks the anniversary of the first major military action fought by Australian and New Zealand forces during the First World War.
For international visitors to Missys Blog ANZACS stands for Australian and New Zealand Army Corps. The 25th of April was officially named ANZAC Day in 1916. During the 1920s ANZAC Day became established as a national day of commemoration for the 60,000Australians who had died during the war. In subsequent years the meaning of the day has been further broadened to include Australians killed in all the military operations in which Australia has been involved.

Missy's school always takes on an active and proud role in the ANZAC day March in the early hours of the morning. Both H-HO and Missy were very excited to be part of the remebrance ceremonies, many school kids attended with their rosemary attached, various marching styles and chests out proud behind a rousing pipe band performance. At the ceremony, after the wreaths were laid, the school kids sang a song "One more Parade". Our schools presentation and involvement in Anzac Day is a real credit to them.

At the going down of the sun and in the morning, we will remember them. Lest we forget.

Show season continues

2011-04-21T23:24:00.002+11:00

Well it's been a busy end to the school term with Athletics carnivals and Easter hat Parades happening, closely followed by the Sydney Royal Easter Show, which we had 10 chooks entered into. We all travelled done and enjoyed a very long day at the show 9am to 8pm, the chooks went well, the kids had lots of fun and we didn't see everything, so the girls and I went back again the next day. The girls enjoyed the Giant Slide again this year and picked out showbags along with some crazy colourful wigs, we caught up with lots of people at the show. Missy spent quite some time studying the photgraphy and artwork (both painting and drawing)sections, choosing her favourites and expressing her desire to enter something in the kids section next year. She recently told me she was going to University to study Art.
we all got home safely from the show but the chooks are still at the show until the end, they are feed,watered and vet checked each day by show officials.

Some wins at our local show

2011-04-09T22:23:00.003+11:00

Our Local show was held under sunny skies but was very wet under foot, that didn't deter our numerous entries.
We took two Murray Grey Bulls and ten chooks to the show along with the kids lolly necklaces (1st & 2nd), fruit & vegetables, flowers, Creature made from fruit (Won Champion kids exhibit)Missy's photography ( she won the 12yrs & under section- see photo titled "Gran's Rose").
Wow what a day.

The New powerchair

2011-03-23T12:52:00.002+11:00

The major project of getting Missy a new set of wheels continues.... after months of trials, the application was submitted just before Christmas and to our surprise we recently received notice that approval had been given for the chair and it can be ordered. This is really great news and we appreciate the assistance. But....ENABLE rejected to fund 3 options on the powerchair which we of course thought were important.
I was keen to appeal the decision and along with the wonderful help of our OT at the Cerebral Palsy Alliance, I supplied extra background examples of why these options were important to Missy's safety and social independance and we have just heard that they will now fund 2 out of the 3 options previously rejected. Unless these government department get appeals and we emphasis we don't just ask for extra accessories for the hell of it but they have a real purpose and are necessary.
Of course the one option - Vertical Lift- was the most expensive about 3K they won't fund, looks like not being able to see over people, always having to look upto people, can't reach items off benches, can't the reach the door/book from a shelf, can't assist in daily chores is just fine for a 9 year old.
Grrr.... we will find a way and she will get vertical lift on her new chair.

5000 hits

2011-03-23T12:18:00.002+11:00

Hi
I am amazed to see today Missy's Blog has now had 5000 hits, that 2000 in the last four months. Originally encouraged by the ABR Therapy group to tell our story, it's become so much broader than that. Missy's life is jammed packed not to mention the rest of us.

It's great to share information with others locally and across the world to assist us ensure our kids reach their full potential.

Busy school life

2011-03-21T23:27:00.003+11:00

This School Term has been a busy one. Missy has settled in nicely to her class and her new teacher is jumping on board with Missy's technology and is keen to expand her writing skills.
Recently the school disco was held, always a highlight with Missy, this year her little sister H-Ho could stay the whole night, not just grab a dance at the start. When it was time to pick them up, they were both exhausted, Missy was glowing red from dancing in her walker.
Missy decided to join the School Girls cricket team, along with her best friends. While all facets of the game are challenging for Missy, not to mention some are dangerous, when protective reflexes aren't working so well. Anyway challenging has never stopped her from having a go. The School team played and won their first game last week, with Missy having a go at fielding and being the photographer. Later Missy told me on her Dynavox that the best part was hanging with her friends while the team was batting. It was a wonderful experience for her, to be part of a school sports team, that travelled away . This week will see the team play their second game at home... Good Luck girls.
Another event to squeeze into this term, will be the Athletics Carnival, hope the battery on her powerchair will hold up.

It's all happening

2011-03-14T23:23:00.002+11:00

With Missy's Birthday celebrations over, there was the outstanding present that Missy wanted, her ears pierced.
Well last week she had her ears done, I was more nervous than her. Missy was so excited and couldn't drive out of school fast enough to get there (for Missy that is out of character, as usually it's impossible to get her out of school in the afternoons).
We pulled up in the car park, Missy leaned over and opened her door by herself. The lady in Pharmacy who knows our family couldn't believe how excited she was, she talked Missy thru what was going to happen (always a good move) and while counting to three, she fired the gun on one, Missy face first was one of astonishment that she lied and didn't go on three. Tears soon followed and while wiping away the tears she signed, "get the gun and do the other one". Missy wanted it over and done with, as she had lots of kids to show off at school to.
So all done, pretty pink sparkley studs, they look great.
Must the picture up soon.

Something a little different...

2011-03-01T22:14:00.006+11:00

While I write mostly about Missy's life , a big part of our familiy's lifestyle is the farm we live on and the Murray Grey cattle we bred.
Recently we made a return to the show ring with our cattle and exhibited two young bulls at the Canberra Royal Show. Murray Greys were the feature bred and 150 were presented for judging from a number of states, the biggest showing in the breed for many years.
Our bulls were in the same class 14-16 mths and we received a 2nd and 4th. The handsome boys(including hubby the handler) are shown in the pictures.
The girls and I went down to the show and the girls lasted a 13 hour day at the show with a showbag, rides and scary fireworks to finish off.

We have another van....

2011-02-28T22:58:00.003+11:00

A few weeks ago, we picked up our new, second hand van from Sydney. We got a VW transporter 09 Diesel LWB with mid roof, this should provide us with the base requirements, that will enable us to to convert it to our needs.
Thankfully the way it is set-up currently it's useable, with a cargo barrier behind the bench seat and using our portable ramp we have been able to transport around the kids and the powerchair.
Later this week, we are taking it to ATS www.accessibletransit.com in Sydney for it's conversion, hopefully only taking two weeks to make it just the way we want it.
So as I soon head back to taking the truck everywhere I will be counting down the days until the VW is ready.

The 2nd Swimming Carnival

2011-02-16T22:26:00.005+11:00

Excitement builds quickly when the kids return to school to find out the swimming carnival is on in the second week. Lots of chit chat goes on amongst kids about what races they are going in, and it's no different for Missy.
Missy blog readers may remember the post about her 1st swimming carnival and her participate in the backstroke race. Well this year she promptly told me that she was going in two races, the freestyle and backstroke.
Missy seems to have little regard to how she will actually stay afloat and propel herself along, that is just something that she thinks someone else will work out, while she tries her heart out, has a go alongside her mates, gains points for her house and shares in the excitement and adrenaline of waiting for the gun to go off.

Our wonderful Aide Miss H went in the water with Missy, who competed in the freestyle race in a wetsuit and then did the backstroke with her neck float on. Missy wasn't happy to start at the 15metres to the finish, like last year and insisted on starting up at the blocks. Missy had only just started her race and the whole school was chanting her name.
Missy has advised me that next year she is going to be in three races... there is no end to the height,she sets the bar for herself.

Little Sister H-Ho starts school

2011-02-08T23:33:00.006+11:00

Missy was excited about her little sister starting school with her this year and was upset the first day, as H-Ho had to stay with the kindy kids for their first lunch and Missy expected she would sit her.

H-Ho cruised into school full of excitement with next to no worries. She has asked could she go on Saturday and loves her teachers.
H-Ho runs to Missy's classroom every afternoon to meet her.

Still Van Hunting

2011-01-25T21:55:00.003+11:00

Since the news from our insurance company that they wish to write our MB Vito Van off, we have been researching far and wide for a new vehicle. We are unable to get one like we had and have decided to try some new things while the unfortunate opportunities arise.
We haven't been able to find anything suitable that is already setup with wheelchair accessibility, so we heading towards a VW transporter LWB with a mid roof height this time, and looking to have the conversion done to our preferences. We think we may have found a suitable second hand vehicle and the converters will have to line the interior, put windows in, wheelchair grade flooring and tie downs, 4 single seats,some air in the back and a hoist or fold down ramp. Waiting on quotes for the conversion, but I'm guessing about 20K.
Hopefully we can get back to something with similar practicability to our Vito.

Leonid's - The Optimism Advantage

2011-01-12T23:12:00.003+11:00

Leonid Blyum the ABR founder posted some inspiring notes in his New Years Greeting that I would like to share with visitors to Missy's Blog. The Optimism Advantage can apply to all walks of life and particularly to parents.
Here is the link to his blog, I have just grabbed snippets from it, it makes for some interest reading.
http://blyum.typepad.com/on_abr_and_beyond/2011/01/2011-new-year-greetings-the-optimism-advantage-.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+OnAbrAndBeyond+%28On+ABR+and+beyond...%29
I’d dare to encourage you to make an effort and even when it feels difficult to keep your optimistic stance – still to keep trying and keeping your internal ‘reality perception’ filters switched into the “Positive” mode.

I know it’s not easy. Sometimes the pressures of juggling all the challenges of bringing up a child with special needs and physical impairments mount up to such extremes that it appears impossible to keep looking at ‘the bright side of life’…
I understand it very well.

At the end of the day, I am Russian, right?

And by and large we are one of the most if not the most pessimistic nation on the face of the planet.
So when a Russian encourages you to take an optimism stance – it’s worth giving it a thought… :-)

The basis of my judgment is plain and simple – optimism pays-off; and I am not simply generalizing – I am talking about the ability of special parents to bring the maximum contribution towards the developmental advancement of the kids with Cerebral Palsy.

ABR is a coaching program for parents. The ABR works through you –- the progress of Cerebral Palsy kids depends on the skill and the ability of a parent to deliver consistent day-in day-out work of high technical quality.

Leonid goes on talk about the key elements that come into play that ensures Optimism pays off. Motivation - more aware of the signs of progress. Higher Energy Level - being optimism doesn't tax you like hesitance, indecisiveness and anxiety . Seeing opportunities rather than obstacles - this is really a point I'm endeavouring to take on board, as we search for a new vehicle, having our wonderful van written off last week. I'm hoping that a new van will provide different opportunities for us, once we jump over the pile of decisions and choices.

Leonid writes: I’d be happy if this little post with the praise for optimism is going to help you in improving your ‘inner game’ even just a little extra bit.
Consider it done, Leonid

Luck has got to change

2011-01-03T22:46:00.002+11:00

HI All
Happy New Year to everyone and hope it will be a fantastic one.
Our recent week hasn't been so good, starting Christmas Eve with Missy's Powerchair charger blowing up, followed by 4 inches of rain on our hay, Christmas night due to be baled on Boxing Day. Boxing Day bought some localised flooding and our wheelchair accessible van got water damage to the engine and is now off the road. All this happens when everything is shutdown. Following this Missy's and H-Ho favourite pet chook died.

Anyway we are hoping for brighter start to the new year then the end of 2010.

I'll be back soon with some wonderful words from the ABR founder of Leonid Blyum - The Optimism Advantage

Class 3/4 S - Top Ten

2010-12-29T21:16:00.005+11:00

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...

2010-12-22T08:50:00.006+11:00

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

2010-12-17T23:47:00.005+11:00

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

2010-12-07T21:26:00.007+11:00

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

2010-11-26T23:03:00.005+11:00

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

2010-11-23T22:31:00.004+11:00

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

2010-11-06T21:19:00.003+11:00

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

2010-10-23T23:15:00.004+11:00

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

2010-10-16T20:10:00.002+11:00

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.

ABR continues

2010-10-09T22:33:00.002+11:00

We have plans to attend another ABR Clinic in November at Sydney, after getting a quick update in July and attending the clinic in March. Thankfully the Clinics are much more compact these days with our videoing, prescribed exercises, workshop and training all over in 2 days. Just Missy and I will make the trip and hopefully will catch up with other families I haven't seen for some time.
Unfortunately my plans for getting lots of ABR done in the school holidays hasn't really come off, with my routines out the window and visitors.
Back to school next week, hopefully I can get back into my routine of sitting down at night and getting in my hour of ABR a night.

Kermit is in use

2010-10-02T23:31:00.004+11:00

Opps.. it been a while since I blogged, been a bit busy - believe or not?
Kermit is Missy's new (well second hand but was still new- confused?) Dynavox V-max, it is a bright green colour hence the name. We managed to get it from a USA family who unfortunately their elderly mother passed away before getting to use it. So it actually brand new but a fraction of the price.
In the USA their medicare system puts a high priority on the value of speech and funds speech generating device. If only our broken disability system could see the value and life changing options available to people when they have the opportunity to speak. After our government telling us when Missy was three that a communication device was not a priority and our recent approach to the government thru our therapist meet with a "get in the long queue behind people who have been waiting for a wheelchair for more than 12months" NSW is in poor shape, compared to other states who give families $7000 towards communication devices.
Anyway back to the positives, Kermit is up and running and as I have blogged before we are enjoying some of the improved features. DET were kind enough to fund a 40 hole new style keyguard which is working well- considering I saved the government potentially funding a $14,000 V-Max thats the least they could do. I have been busily programming and trying to incorporate some of the new setups with some familiar pages that have I imported from the DV4. I am yet to master the E-Books and need to personalise some the InterAACT pages to our situations, no doubt we will get there.
So when Missy returns to School Monday week, she will be accompanied by Kermit.

No Flies on Missy

2010-09-12T22:43:00.005+11:00

Last week I arrived to pick up Missy from school when Miss H asked me to stick my head in the classroom. The kids were working on their Father's Day card, which was in a set format that they coloured in, while I watched from the door, with the kids backs to me I could see Missy was intently colouring in her card, signing to her friends the colour that she would like next, they then would passed to her in a way she could grasp the pencil and just get back to their own card - very little words spoken just a simple understanding of gestures signalling wants and appeciation.

The kids had to fill in a special coupon for their Father to use, as I quickly scanned some cards of the kids they had included coupons for making cups of Coffee and no nagging for a day. Missy had her own ideas of course(see card) and obviously thought the best gift would involve something that makes her really happy also.....well while her idea seemed self consumed, nothing would make Dad's Day more special than having Missy smiling and enjoying life.

The Northcott Athletics Carnival

2010-08-24T23:11:00.005+11:00

We made our third annual trip to the Northcott Interschool Athletics carnival at the State Sports Centre at Homebush last week.
It's a great Athletics Carnival where kids with a physical disability get to compete against others. The kids events are broken up into categories depending on their level of ability and reliance on equipment. Missy stepped up this year to compete against Primary Kids Yr3-6 together and competed in the category where kids have a high dependence on their walking frame.
The day started with an early rise,leaving home by 6am, along for the trip was Miss H with her video camera, the school banner and H-Ho with her cheering voice ready. Arriving with time to spare, Missy kept checking the programme and was saving her energy just cruising the stadium in her powerchair. As it neared her 25 m sprint, she jumped into her walker and couldn't wait to go to the marshaling area. She stood on the line so fiercely determined to win, the whistle went and she was off, the kids in her race all had Kaye Walkers(a less supportive walker) and were older but... she looked across the field, to see she just had the lead at the 15m mark and that was enough to make sure she just kept her legs pumping to take out the finish tape and be the winner.....
Next she competed in the Bean Bag race, a race that requires them to run to a hoop and drop a bean bag in it and run back to the start and do this three times and then sprint to the finish line. Missy did really well with the bean bags and was heading to the finish line when she kicked a shoe off, a worried look came over her face but she keep running and finished third. Missy went on to compete in the powerchair slalom, shot put and took part in the combined school relay team.

We had a wonderful day , thanks to Aunty K and cousin M for coming to cheer, it's a day when Missy's can really shine and her competitive nature is in overdrive.
The following day at school Missy was called to the front of the assembly with the results read out, Missy smiling away, so proud. It concluded with the school singing her the Bravo song.

"Our School's got Talent"

2010-08-14T22:51:00.003+11:00

Missy's school SRC recently conducted a competition called "Our School's got Talent" where students could perform anything they like. Performance heats were held over Term 2 and the Grand Final was held last week.
Of course any sort of performing was up Missys alley. So Missy and her friend put a dance together to Miley Cyrus's "Hoedown" they performed wonderfully in the heat to win a spot thru to the Grand Final.
The Grand Final had so much excitement surrounding it, as it was attended by the entire school and many parents, as it was held during our open day for Education Week. The girls had been practicing their dance moves during their lunch breaks with Miss H who does a wonderful job with all the extra curriculum stuff. Missy and her friend recruited another member to the dance group and they throw on the wigs and plenty of bling and took to the stage full of excitment and confidence and danced away to "Crazy" by Hannah Montana. Missy danced in her walker and I was so proud of her confidence to have a go.
Once the performances were over and an assembly was gathered, the results were read out, you could tell from Missy's face that she had no doubts that their act would be winning. Well...... as no places were given just 4 winners in the Junior & Senior Section... they read out three winners in the Junior and Missy's face had started to transformed to a worried look......and then the 4th winner was the "Crazy girls"... well she and her friends took off out the front, jumping out of their skin and smiles that couldn't be bigger.
Fun all around...

Dynavox V-Max trial

2010-08-02T23:19:00.003+11:00

After trialled the Eco2 and now the Dynavox V-Max, I have a clear preference for the Dynavox. Yes it is more familiar to us but allot of the little annoying features of the Dynavox DV4 have been improved on the Dynavox V-Max.
I will attempt to list them;
There is an improvement in the ability to view the screen when outside with the addition of a light ambient sensor on the front.
Speakers are located on the top front part of Dynavox which allows for better projection.
The is a UNDO button, so in our case if the clear button is accidentally pressed after Missy has spent 10 minutes typing up a sentence , it can be retrieved, the undo feature also applies the page editing that you make a mistake with.
It's an integrated computer/Dynavox, hence providing more Independence to send emails, research the web etc.
Now has the option to read E-Books on screen and games.
Improved and more choices of voices.
Has Interaact Pages, so it shows different pictures of situations appear like a doctors waiting room and you press on an area that you want to ask about, ie press the clock and a popup appears with relevant questions about the time....how much longer? So it provides numerous platforms and encouragement to ask the relevant questions to the situation.
We feel at this stage in Missy's literacy development we didn't want to take her over to a Minspeak system that the Eco2 provides along with a few features that I didn't like on the Eco2.
So I guess we will move onto a Dynavox V-max, our Dyanvox DV4 has served Missy well for five years now, allowing opportunities for language development, computer access, social contact, pre-school and school transition and importantly being seen and expected to contribute to conversations and learnig as she has a means of communication and the ability to demonstrate what she thinks is valuable.

Back to School

2010-07-22T23:42:00.003+11:00

Missy was pleased to be back at school, after a pretty ordinary school holiday break. H-Ho got a chesty cold and then passed it on to Mum and Missy. So combined with the terrible winter weather and Mum being on tissue patrol, it was a long holiday break spent indoors. We did manage to get to the movies once where the kids went their own way, Missy went off to see Karate Kid with Mum and H-Ho to see Marmaduke with Dad. Missy came out the movies practising her Karate chops , she must have looked a sight driving her powerchair out of the dark room, legs going flat out with karate kicks and the left arm swinging around while the right arm drove her chair. What a larikin she is? While H-Ho came out talking about Marmaduke doing a bottom burp in the bed.
We are trialling the Dynavox v-Max at the moment and I'm pretty pleased with it, alot of the little annoying things about the Dynavox Series 4 have been addressed. Anyway I will cover this more in my next post......

Quick catch up

2010-07-11T23:58:00.003+11:00

Hi, Been so busy here, my blogging has been lagging.
Now in the full swing of school holidays, the kids are enjoying sleep-ins. We had a recent trip to Sydney for Missy's check up at the CP Clinic, all reports came back very good, Hip x-Ray continue to be stable and she maintains her full range of movements. We are lucky to stay with Aunty H again when we visit Sydney, it makes the trip allot more comfortable.
We won't be attending the ABR Clinic being held in August in Sydney, as we are still going well with the exercises we were given in April.
We have finished the Eco2 trial and should have the Dynavox V-max arriving next week to trial.
Cheers

Loving the Neater Eater

2010-06-22T22:33:00.004+11:00

Well the Neater Eater has arrived in our house and everyone is loving it especially Missy. Over the years we have continued to look for ideas in particularly when it comes to eating and drinking that provide independence. We have the sandwiches and drinks now sorted with TAD's help(see other post). However dinner and breakfast were time consuming and didn't provide the opportunity for Missy to be independent.

The Neater Eater made in the UK is a eating device that greatly assists with controlling arm movements and works on a spring system that is very adjustable, so the distance back and forth and the height to the mouth. So after moving the spoon into the dish and you have your desired amount on it will lift by it's self and move to the mouth position. The plate has a small lip around it to assist pick ups and it has stand underneath that fits into a hole making it very stable but can be turned to find the best bit of dinner or the most tomato sauce.
Dinners have been transformed with Missy now getting hers first and not having to wait for me to sit down with both our dinners, so I can start feeding her. No longer is there one mouthful for me and one for Missy with both our dinners going cold. Missy is highly motivated by food and the independence this machine provides while enjoying her favourite past-time EATING is awesome.
Of course they are an expensive piece of equipment, with accessories they retail about $4K however I was in the right place at the right time and a few trips to Sydney, I managed to picked up a demo for much less.
Video attached is Missy eating some slippery peaches in her first week of practice.
Her determination to be independent is inspiring.

Hectic Life continues

2010-06-11T23:27:00.003+11:00

Life continues to run at a fast pace since returning home from the Gold Coast. Following that trip I have done two Sydney trips, just quick down and back day trips, to pick up some sale equipment including a neater eater - what's a neater eater? well watch this space i will take some photos of Missy using it and post it very soon.

We are continuing our trial of the Eco2 Communication Device at the moment.

H-Ho has celebrated her Birthday with a friends party, a family dinner and cake at Pre-School.

While the pace of our household picks up, the temperatures we are experiencing are dropping dramatically. Winter has hit with a top today of 5 degrees. Beanies and scarves are standard school uniform around here.

Home from Spectronics Conference

2010-05-31T23:22:00.003+11:00

The Inclusive Learning Technologies was held last week over four days. Previously attending in 2008, the Conference was once again very well organised with speakers from overseas, a jam packed schedule with 6 concurrent sessions all day, various supplier stalls, and 750 people from across the globe enjoying the Marriott Surfers Paradise venue.
I probably didn't get as much out of it as the last conference but then again we are another 2 years down the track of providing technology options for Missy. It cemented some ideas that had previously been forgotten, to now try again, it provided some further information on the latest very expensive communication devices and where we may now head as Missy's Dynavox DV4 will soon be out of warranty as she has had it for 5 years now. We are currently trialling the Eco2 and in August will trial the Dynavox V(5) Max which by then we would have waited 11 months just to trial the device. By the time it's trialled and applications written the Dynavox VI(6) might be out.
We were given a thumb drive with lots of informations including all the presenters presentations with a CD to follow. We picked up a Step by Step communicator that has three levels,just a little quick system to use for greetings and other news that is easy to press when she driving around. http://www.spectronicsinoz.com/product/step-by-step-communicator-with-levels-enhanced . I also ordered some handy little talking brix, an updated version of a single message switch that don't run on batteries, we find these really handy by the toilet and other areas where you need to call from. http://www.spectronicsinoz.com/product/talking-brix-communicators

Cross Country Course Conquered

2010-05-20T23:54:00.007+11:00

This week saw our school hold it's Cross Country Carnival,in a local national park. This was our first experience as Missy has now turned 8. The school didn't bother asking if Missy would like to go, they knew the answer to that.... she will be there!!!! The question was how could Missy have an inclusion experience when her mates would be running across and down hills over the banks of dams and up a hill called heartbreak hill.
I suggested maybe she would like to be the photographer for the carnival, well that met with a luke warm response, and we concluded that will have to see the course.
Upon arriving, she was quick to get in class lines and head off to walk the course... hey!!! better take your anchor man.....DAD. I didn't want to look as I'm a bit parniod about tipping the chair and stayed behind with H-Ho.

Well.... they made it back in one piece from the look and see, not without Dad swinging off the back of the chair to stabilise it. They was times she had fears about driving but she persisted knowing Dad was there.

Anyway hoping now that she had seen the course, she would take up the option of taking the photos...well this time it met with a ..you have to be joking mum, I'm racing.
So off to the starting line she went, poised for the start, edging on the line, the 8 and 9 yrs girls were off. Within 200 metres they were out of sight heading down the hill, it didn't deter Missy she just keep driving with all of us in tow, Mum, Dad, H-Ho and Miss H.
We made it to the bottom of the hill - what a relief! now up the next hill. Missy steps up to 4th gear and H-Ho strides out with her and well, Mum is huffing and puffing, falling further behind. As we head up the hill the older kids who started later are making their way pass Missy offering words of encouragement thru their breathlessness "Keep going Missy" You are doing really well" "Way to go" and like all the kids crossing the finish line Missy and Heidi were cheered by their mates for conquering the course.
Oh! the joys it brought Missy to complete the course and just being part of what everyone else does, she expects nothing less and deserves nothing less.

Big effort in Naplan

2010-05-17T23:21:00.004+11:00

Planning started long before the Naplan tests that filled last week.
Missy could have easily received an exemption from sitting the Naplan but.... never one to shy away from a challenge we forged ahead. Missy attends a mainstream school to experience all the regular activities that her peers undertake and the expectation from us and particularly Missy is that she will part-take in everything.
Our school Principal, school admin, teachers and Miss H (Teachers Aide) have supported us all the way with providing Missy with a inclusive platform where the tests are accessible and the test environment is conducive in allowing Missy's to show her potential, while maintaining a positive self esteem.
DET took a giant step forward by providing the Naplan test in PDF format and allowing it to be interactive. An interactive system that is familiar and accessible to Missy. Miss H had thought of everything as usual and put a great deal of effort into the preparation which we appreciated.
Of course Missy never lets anyone down with her efforts,and with her first real test experience she tackled and attempted every question.
So with that behind us, the results are not a priority, as our weekly correspondence with her teacher and aide provide more relevant and uptodate information.
We were really pleased with her effort and the fact she finished the days with her mates being able to share in the similar experiences is really important.

Blog Award

2010-05-10T22:36:00.003+11:00

I was sooooo surprised to receive notice that our MissysCpJourney Blog had won the most Progressive blog award from ABR.
While always wanting to do a blog, so we could share information with others, Advanced Biomechnical Rehab provided the support and incentive to get started. The award entitles us to receive one months free ABR machine rental, which is about $350 worth.
Our statistics have been really interesting with over 1100 hits in our short existence and the number of OS visitors.
Thanks everyone for sharing in our blog and the joy Missy brings to our lives.

Another winning Photo

2010-05-01T23:07:00.003+11:00

Missy entered some more of her photos in another local show last weekend and had a wonderful result. The photograph section was very large with over 100 entries in the Colour and B & W section for school students <18yrs. Missy won the B & W section with the included photo, how exciting - she is thinking how to spend the $20 prize money.

Toothless Terror

2010-04-30T00:14:00.003+11:00

Missy returned to school this term - minus her two front teeth. Two teeth gone in two days with some help from her constant fiddling with them.
Lucky Missy's smile is still just as big. H-Ho is a bit concerned and after looking at Missy's smile she said "I don't want my teeth to fall out mum".

The Sydney Royal Easter Show

2010-04-21T23:28:00.000+11:00

Combined with our ABR clinic was our visit to the Sydney Royal Easter Show. Added to our big day at show was our entries of poultry. Completing against people that had been breeding chooks for 40 years, we were just enjoying the opportunity to put our chooks alongside others, we never imagined we would come away with two champion Male in different breeds and other places.
The girls really enjoyed the day lasting 9.5hrs, buying their carefully studied showbag choices and riding the giant slide.

Home from our 10th ABR Clinic

2010-04-13T00:41:00.000+11:00

10 Clinics - where has that time gone when nearly 4 years we flew to Singapore to meet Leonid and start our ABR journey to endeavour to improve Missy's physical capabilities with our long term vision for Missy to lead an independent life.

We must be up to about 12,000 ABR hours by now with still a steady flow of improvements in Missy. We still hire the machine also.

The latest clinic was held at Eastern Creek at the Chifley, the new location suited us well, nice place with good accessibility, helpful staff and it was great to have a conference room for the Clinic, I think it must be the first clinic when everyone could fit their wheelchairs into the room and not left out in the hallway for hotel guests to maneuver around.

Missy handled the hands on assessment very well this time, no tears. We had improvements in her sitting platform, her ability to weight bear thru elbows, gait and vertebral column. We were given a comparison file showing different positions from 2006 alongside 2010 photos which were really interesting, reminding us just how far we have come.

Workshop and training allowed us to revisit our technique and of course it needed brushing up. We were then given our new exercises, our priority is Missy's shoulders which can really inhibit so many day to day tasks. Once the shoulder girdle is stabilised there is a cascade effect down the arm to improve function of the elbow and hand. We were also given the Supercharge exercises(that's the one with me sitting on Missy) which also needs to be done daily.

So as usual, now that we home, we are playing with positions and times of the day when the exercises can be fit in without taking away fun time. Currently getting close two hours a day done but that's just because it's holidays. Just need to have a 28 hour day when Missy's goes back to school to keep it up.

Cheers

They had to be pink

2010-03-29T22:58:00.000+11:00

Recently Missy was prescribed glasses, after seeing an ophthalmologist for 7 years, her intermittent squint was improving, however she now had become a little short sighted over the last 12 months.
With prescription in hand, I knew a visit to choose lens and frame could be interesting. After trying on every pair of kids glasses in the shop, she had choose a pink pair of course, which I think look very pretty.
She has been wearing them well and they are only on for short periods during the day and when she needs to read the whiteboard or watching the TV from a distance.

Inclusive Learning Conference - Gold Coast here I come

2010-03-18T22:15:00.000+11:00

After attending the Spectronics Conference in 2008 and the fact that Missy will soon be looking to upgrade her current communication device(Dynavox DV4) I was keen to get back to the biannual conference.

The Inclusive Learning Conference(hosted by Spectronics) attracts very highly regarded experts in the field of AAC and it's associated technology, the four days are jammed packed with 7 concurrent sessions running throughtout most of the days, which can actually make it difficult to choose which to attend.

After applying to a couple of service providers for sponsorship to attend the conference, I was successful with a local respite provider who was able to provide the flexibility to change respite to carer education.

Flying and staying with another mum at the venue should make for a great time, while my brain won't get a rest, it will be a break from the day to day rountine of school runs, therapy, homework, cooking and cleaning.

Easter ABR

2010-03-09T22:38:00.000+11:00

We have a busy Easter ahead of us with the ABR Asia team arriving at Easter for the first ABR clinic of 2010. This clinic will provide us an opportunity to review our soft ball rolling technique that we have been doing on Missy since Nov 09. We were advised the soft ball rolling technique was to be a priority, so with only getting in an hour in per day, there hasn't been much time for the other excercises. Missy continues to wear the machine 6 nights a week. We have seen some further improvements in Missy's balance and increaased definition in her thorax since the last clinic.
So while we are attending the clinic,we will take the kids to Royal Easter Show where we have 7 chooks entered. H-Ho and Missy have already checked out the website to pick some showbags.
So it will be a busy and varied Easter period and are thankful of family and friends who will stay here to look after things.
Some photos show H-Ho technique and when Missy won't let go of her toys to put machine on.

The Photos were winners

2010-03-03T23:16:00.000+11:00

At Missy's first photographic competition, (our local ag show) she was very sucessful winning the Novice under 12 yrs section and the Novice Portrait section. She was very proud to see her pictures displayed at the show and of course H-Ho to see her face on the wall.
Hoping to encourage her interest by entering in some other shows and maybe she might take up the role of photographer for the newly proposed school newspaper.
Not only Missy's photos were winners but our chooks did very well also with one of our roosters taking out champion of the show.
The girls also enjoyed the cha cha ride, Missy's found the ride and wasn't going to be happy until she got on, despite us telling her watch just how fast it goes(actually that just made her want it more). As we have experienced before the ride operators were very helpful and obiliging, they were so pleased to see her enjoying the ride so much and calling out more as it slowed.
All in all a great day out at the show which was followed up with two of her friends coming over for a birthday sleepover. They had a great time.

Switch, Switch, Click = photos

2010-02-24T23:03:00.000+11:00

HI Everyone
Been hectic here, what's new. Missy is settling into school well.
Recently we have trialled a switch accessible camera, which basically uses a digital camera which is now mounted on her table where her drinker usually is. An infrared signal is sent from the camera to a small box interface that sits on her tray also with two switches, one switch controls the zoom while the other takes the photos. The size and style of the button switches makes pressing achievable for Missy.
So while the camera is mounted on the powerchair anything is a target for Missy to snap pictures of, including my backside. Thankfully having a little Sister H-Ho who is happy to pose for the camera it is providing a co-operative subject.
Being impressed with some of her photos she has entered some in our local Ag show this weekend in the Junior section. See photo on right.
With Missy's Birthday in two days, she is very excited and when I asked her what she wanted for her Birthday all she wanted was her friends over for a sleep over. She has never been a greedy kid, just loves to be around her friends.

In the swim

2010-02-13T21:48:00.000+11:00

Last Friday, Missy attended her first swimming carnival for her mainstream school. Missy was very excited about the event waking at 4am. She choose to go in the backstroke which had only a 50m race for 8yr olds and she wore a neck float that has taken a couple of years for her to take a liking to. Since getting a blow up pool for Christmas she has soon realised the freedom the neck float gives her. It has allowed her to control her centre of balance which was challenging and very scary for her when first starting out.
As the pressure built up preceding her race, I was thinking this might get a bit much for her but with her heart racing she stepped up to the mark with her "have a go" attitude. Starting from the 35 metre mark she waited excitedly for the starters gun with Miss H in Lane 1. "Bang" and Missy took off with her own unique style of backstroke, she loved every minute of it and managed to smile thru her wild splashing. As her fellow competitors caught up to her, not only her mates but most of the school started the chant "Let's go Missy, Let's go". Missy left the pool with a 4th place, a time sheet, many high fives from fellow swimmers, emotional congrats from teachers and some wild photos taken my proud mum as I cheered.
Look out at next year's carnival, she has her eye on more than one event.

Back to school

2010-01-29T21:59:00.000+11:00

Missy was eager to return to school this week. She couldn't wait to hook back up with lots of her friends. Missy entered Year 3 this year and is actually in composite class 3/4 which meant that the majority of the kids haven't been in a class with Missy before.
Knowing this prior to starting,it had made me a little anxious as the skills kids learn from being in Missy class in prior years makes transition smooth. Missy and I discussed maybe we could make a powerpoint presentation about herself to assist many of the new kids. Missy was keen, loving powerpoint presentation choose the things she wanted to share with the class.
Missy was keen to go out the front and use her Dynavox to explain each slide. We made sure the children got to learn about Missy's likes - loud music, dancing and riding fast motorbikes (Photos and sound effects included)she also spoke about the Dynavox, powerchair and a bit about cerebral palsy and how it makes using her muscles tricky. I attended the presentation which we watered down to be her news for the week.
Wondering what sort of questions the kids might throw her way... well they couldn't care less about the CP and muscles part just questions about... How fast can your chair go and have you had any crashes? how many pages on the Dynavox? How does it control the TV? Cool....
So after hearing what interests them and watching the kids leave the classroom on the first day practicing the sign for thank you, I think we have another batch of adaptable kids who once they get used to Missy's parapheralia she will just be another kid in the class.

Eating & Drinking Independantly

2010-01-21T22:49:00.000+11:00

The smile says it all - I can do it myself.
For some time now we have been looking at ways to allow Missy more independence while eating and drinking, reducing the time an adult has to hang around. I had the idea of a goose neck style attachment-easily moved by Missy but strong enough to stay up with a sandwich and drink holder on the end but how could I make my idea come together. TAD(Technical Aid for the Disabled) was my answer and with a call to our local TAD volunteer, Richard the idea was certainly possible. Richard has helped us out before with Missy's bed and 2 bikes and is one of the number of TAD volunteers, who as retired tradesmen and professionals donate their time and expertise to create customised projects to assist people in their everyday life.
The stand and goose necks were purchased from a music shop for about $15 and Richard made the screw on adaption and created the plastic moulds for the drink and sandwich holder. We have two stands -one on each wheelchair table and then we screw on the self feeder head. We are now working on a longer goose neck with an adaption for a camera on the end, she could then be a roving photographer.

Missy has already been warned that I may have to book her if she keeps drinking and driving around the house.

These little steps towards independence have a huge effect on Missy's life, it's great for her self confidence, she can just sit and eat and drink at her own pace with her peers(they actually adjust the sandwich as she eats it).

Thanks again Richard, you are a gem!!!!

Mainstream schooling

2010-01-15T23:25:00.000+11:00

Missy attends a local regional mainstream school and will head into Year 3 this year. We chose the mainstream route after attending many Family Advocacy workshops and shared in the stories of others who achieved inclusive lives for their children. A fully inclusive life was our dream for Missy, so we set about gathering support, educating ourselves and most importantly talking with other parents.

We wanted Missy to be part of our local community, that starts with peer groups at Day care, Pre-School and mainstream school, not attending a segregated special school where peers groups are restricted.

We chose our school carefully and haven't looked back, it is lead by an enthusiastic principal who supports our vision that Missy belongs in a mainstream setting. Missy is supported full time by a teachers aide while at school, but not just any teachers aide - Miss H who we brought to the school with us. Miss H has worked with Missy for 6 years and is now part of the family. Missy has many wonderful friends at school who greet her each morning, they have expectations that Missy will be included in everything and everyone learns each day to think "how can we do this activity" so Missy can do it. Miss H and class teachers along the way have role modelled this and the kids are straight onto the challenges.

Kids with special needs attending mainstream schools bring out inclusive and empathy qualities in kids. It's has to lead to better communities and inclusive workplaces.

Where were all the kids with disabilities when I was at school? I see it now as missed opportunities to enrich my life.

Diving into ABR

2010-01-05T21:47:00.000+11:00

After visiting a Cp rehab Specialist when Missy's was about 4yrs and being told to get Missy a power wheelchair and not to do ABR. We felt that was not a rehab plan for our daughter who had loads of potential,this narrow mindedness cemented our decision to give ABR Therapy a go. We had done the research, thought we could fit it into our life, it didn't involve irreversible surgery -just money and a lot of time.

So in July 2006 we booked out flights and accommodation to Singapore to meet Leonid Blyum(ABR Founder)and receive personalised training in rebuilding Missy's muscleskeletal system. What was I thinking........ leaving our freezing winter to go hot sticky Singapore with a husband who has a fear of flying and Missy's who couldn't stand anyone slightly medical related looking at her, not mention her fear of Asian looking people(since her rehab doctor was of that appearance). Sucker for punishment!!! Anyway the planning paid off and everything ran smoothly and Missy screamed(it was always going to happen) throughout the hands on assessment with Leonid, thanks heavens he has a loud voice, so we could hear him on the video. Since then we have returned to Singapore twice and attended a number of ABR Satellite Clinics in NSW. We no longer need to travel to Singapore YAY!!!!!!!

We have seen very positive results from ABR and the mainstream professionals now just watch on from the sidelines. WE do manual ABR every day and Missy wears the ABR machine every night. So over the 3.5 years of ABR so far Missy has received a total 10,500 hours. ABR can produce permanent spontaneous function improvement as the structure is improved.
ABR is certainly not a therapy to enter into lightly, it takes a lot of money to attend clinics and but most importantly it takes a lot of dedication and time to do the manual ABR on a not always co-operative child at the end of the day when that child has needed your assistance with everything. To make it work both my husband and I had to fully support the Therapy choice and give Missy and ABR the best chance possible. We are pleased with the sacrifice made for ABR, as Missy gaining the ability to sit independently and crawl has been life changing for her. We look forward to further gains.

Therapies so far

2009-12-29T21:37:00.000+11:00

Missy is nearly eight now and over the years we have done a variety of therapies to assist in reaching her full potential. We did the usual OT,Physio, Speech Pathology, Hydrotherapy. We tried a second suit with minimal improvement for the difficulties of wearing it, we also tried Botox with nasty side effects, the injections were done in her legs which ended causing excessive rolling of her feet and blistering in any shoes but the scarey part was the effect it had immediately on her eye control. While she had an imminient squint, her eyes turned in dramatically more and more frequently, thank heavens as the botox wore off her eyes improved back to their pre-botox state. So not enough gains to ever take the gamble on botox again. When Missy was 4 years old we had heard about Advanced Biomechanical Rehabilitation (ABR)and researched it for some time, most important talking to other families about it. We thought that it made perfect sense to work on restoring Missy's muscleskeletal system to improve function, previously attempts had only provided a bandaid solutions to Missy's underlying deficient structure.

Getting started on Missy's Blog

2009-11-24T23:20:00.000+11:00

Hoping to share with family, friends and others an insight into our lives and it's highs and lows. Missy was born with the cord around her neck very tightly three times. Showing her gutsy determination from the start she recovered however the oxygen shortage resulted in cerebral palsy.
Missy's gorgeous smile won everyone over quickly and we were given a diagnosis very early on, not really knowing what those labels meant, we steered clear of asking the big questions about Missy's future. We didn't what to hear what the medical professionals really thought because we had own ideas and dreams for Missy. Our lives changed in so many ways and will continue to.
Dream Big