Technology Set Up

Recently another Mum asked for some photos of our technology set-up in the classroom. So I have managed to do a short video in the classroom of Missy using her technology. I will attempt to break it down bit by bit. Missy is using direct access with a 40hole keyguard on her Dynavox V-Max, which is sending by infrared (using an Access It)words/number etc to the Laptop which is showing a scanned copy of the worksheet the class is working on. We use PDF Converter Professional to provide a platform to make scanned work, interactive by having text boxes and the like in the right place for answers and ease of tabbing thru questions, also writing some notes on the scanned copy showing on the laptop. Also on this video Missy is showing Text Help Read & Write Gold software that offers word prediction (amongst other features)in the blue box on the laptop, so she can shortcut words by pressing an "F button" for the word she sees instead of typing it completely.
Missy's I-Pad is not showing in the video but it is also mounted to the side of the Dynavox on the steel bar. It used for a number of visual aids, photos are taken of the teachers board which may have the instructions or key words for  writing activities, so that they can be close and at the same eye focus range, these shortcuts can help with fatigue and focus. The I-Pad is also used as an ideas chalkboard, so for a writing piece she would pick her key words or story line on the Dynavox , it's hand written on  the chalkboard app and Missy will write her story on the Dynavox but be able to stay focused on her ideas.
We use the set-up for some Maths work also, workings can be done on I-pad and entering answers on the Laptop via the Dynavox. Allot of photos are also taken of references materials(ie. Time tables) that may be around the room, so Missy then has a reference bank that is acccesibile for her with a swipe. We are lucky to have a teachers aid who is techno savy and can quickly make teachers spontaneous activities accessibility.

During meals and playground time in the school grounds Missy uses a Lingo, (lower tech) small device with eight buttons, pre-recorded voice output, for quick easy questions or news, it has some velcro on the back and can be put on the table or her pommel.

Masterchef - Meeting a Star

I know it's on the side but I tried everything and it appears portrait on my computer until you post it somewhere - anyway with the portability of devices these days shouldn't be hard to spin your device.
Missy has been obsessed with the Masterchef TV series, so when she heard about cooking classes for kids with Kate Bracks on the radio travelling to school one day, she couldn't sign fast enough that she wanted to be a part of that.
So with phone call or two to confirm access (of course) she was booked in. Missy had a chat with Kate before her class came in and she had a lovely time cooking some yummy goodies. She couldn't wait to get back to school and tell her friends about and just this week at Book Week(themed Champions), Missy went as Kate (2011 Masterchef winner).

The Ukulele

Over the years the music curriculum at school has been challenging for Missy with recorder and wind like instruments being nearly impossible.

So Missy was excited to have Ukulele this year with the bonus of being able to choose pink. Of course the best thing about Ukulele for Missy is that it doesn't require her mouth, so she can sing along in her loudest voice, while strumming the Ukulele - although sometimes she is so consumed with singing she  forgets to strum. Miss H plays the cords, while Missy strums and the duo will be part of the Stage 3 Eisteddfod next month.

Back to school

July has brought us some sickness with the kids having 3 week break instead of 2 and it continues with other family members with a persistent cough in our house. Missy couldn't wait to get back to school and spend time with her friends. In the holidays she had a great day out with three friends shopping, she came home with a new wardrobe , no money left but they are planning on a shopping trip each school holidays. On return to school the girls soccer team was announced and unfortunately Missy didn't make the team which she was cranky about but took it in her stride and will continue to trying out for sporting teams. In regards to the previous post about Missy's arms she continues to improve with the use of her hands and this week has done some much improved handwriting, which she is very excited about, it is that one skill that she has never given up on and it's great to see her reap some rewards.

ABR Faith

Back in a post in May, I mentioned the changes in Missy's arm, shoulder and hand functions. These negative changes in Missy's function brought some very dark days for me especially and but of course huge frustration for Missy.

With the mainstream therapy options, offering very little for Missy’s Dystonic CP Rehab, we have been doing ABR for 6 years now, and obviously have a lot of faith in Leonid Blyum's ABR Therapy:

'The objective of ABR is to restore proper tone to the smooth muscles/internal myofascia, which in a cascade effect restores proportions and alignment of the skeleton. During this process, the muscle tone is normalized and the arms and legs develop increasing muscle mass, normal range of mobility, and finally: sufficient strength - so that the children can develop their movements in normal spontaneous ways'


We have been focused of Missy's arms and shoulders for the last two years in particular and have seen the ABR techniques change and evolve of the years with the recent upgrades to the ABR Techniques // TransFascial Viscoelastic Applications proving really powerful.

In May, after working around Missy's elbows and between her shoulder blade and C7 for a couple of months we saw Missy arm function become more difficult and started getting locked in arm positions and the more she tried the harder it got. I took a short video of Missy struggling and sent it to Leonid for his advice; a quick and detailed response came back. Leonid explained the changes happening and while the negative outcomes seemed frustrating, he could see some positive changes and assured us we would get pass this and assigned us some new target areas.

Supported by ABR Asia- Sarah we got stuck into our new exercises, all the time answering questions from the on-lookers in Missy’s life – why is this happening? Will this get worse? When will we see an improvement?

I tried to remain focused and determined that we would get back on track with Missy’s function but while I tried to get rack up our ABR hours, we had to look at ways around Missy’s frustration, so the Eye Gaze System and Missy’s teachers aid – Miss H came to the fore with working around making the school curriculum accessible. Missy’s friends were quick to adapt as usual, picking up the eye gaze chart to get Missy’s answers.

Last week after about 50 targeted hours we could see the positive changes coming back into Missy’s function; her arms were coming forward easier with increased controlled direction and the re-emergence of the pointer finger. Missy would look at me, smile and sign my arms are good, her relief and excitement was so encouraging. She is very keen to get on the floor now and crawl, feeling more strength and control over her body, this is something she hasn’t wanted to do in 12 months.

So just as Leonid prediction we are now in a good place with hopefully more arm and hand function to come for Missy.

Thank goodness for ABR and Leonid Blyum.

Waiting for the PAT Dog.

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

10,000 hits...wow

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

Athletics Carnival

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

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

 

Eye Gaze, Naplan and Catch Up

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

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