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.