Wednesday, December 29, 2010

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.

Wednesday, December 22, 2010

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.

Friday, December 17, 2010

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 could have splashed. That's Missy just being one of the kids.

Tuesday, December 7, 2010

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.

Friday, November 26, 2010

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.

Tuesday, November 23, 2010

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
and the Magic Frontier 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.

Saturday, November 6, 2010

over 3000 hits

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.

Saturday, October 23, 2010

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...

Saturday, October 16, 2010

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.

Saturday, October 9, 2010

ABR continues

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.

Saturday, October 2, 2010

Kermit is in use

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.

Sunday, September 12, 2010

No Flies on Missy

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.

Tuesday, August 24, 2010

The Northcott Athletics Carnival

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.

Saturday, August 14, 2010

"Our School's got Talent"

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...

Monday, August 2, 2010

Dynavox V-Max trial

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 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.

Thursday, July 22, 2010

Back to School

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......

Sunday, July 11, 2010

Quick catch up

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.

Tuesday, June 22, 2010

Loving the Neater Eater

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.

Friday, June 11, 2010

Hectic Life continues

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.

Monday, May 31, 2010

Home from Spectronics Conference

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. . 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.

Thursday, May 20, 2010

Cross Country Course Conquered

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 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.

Monday, May 17, 2010

Big effort in Naplan

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.

Monday, May 10, 2010

Blog Award

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.

Saturday, May 1, 2010

Another winning Photo

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.

Friday, April 30, 2010

Toothless Terror

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".

Wednesday, April 21, 2010

The Sydney Royal Easter Show

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.

Tuesday, April 13, 2010

Home from our 10th ABR Clinic

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.


Monday, March 29, 2010

They had to be pink

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.

Thursday, March 18, 2010

Inclusive Learning Conference - Gold Coast here I come

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.

Tuesday, March 9, 2010

Easter ABR

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.

Wednesday, March 3, 2010

The Photos were winners

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.

Wednesday, February 24, 2010

Switch, Switch, Click = photos

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.

Saturday, February 13, 2010

In the swim

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.

Friday, January 29, 2010

Back to school

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.

Thursday, January 21, 2010

Eating & Drinking Independantly

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!!!!

Friday, January 15, 2010

Mainstream schooling

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.

Tuesday, January 5, 2010

Diving into ABR

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.