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Riders on endurance mission

Riders on endurance mission.

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2012 Murray-to-Moyne Update:

Well the ride is now over… the riders and support crew are all back with their families. The riders will be sore, but hopefully not too sorry and the drivers and Hamilton camp team will be tired too. For a group of strangers to come together for 3 days and then travel 520 hard yakka kilometers is truly awe-inspiring.

You all say that it is nothing to do what you have done. Please be rest assured, you have made a huge difference in a little girls life, and our family is forever indebted to you xxxx

Our humble thanks to the Ride 4 Georgia team:

Sandro Ammann – Rider

Anthony Arthur – Support Crew (Hamilton)

Cameron Brown – Rider

Andrew Buckley – Support Crew (Driver)

Renate Crow – Rider

Simon Diner – Rider

Adam Gatherum – Rider

Nick Guerrine – Rider

Marcus Kunath – Rider

James Mackie – Support Crew (Driver)

Anthony McCormack – Rider

Chris Thornton – Rider

Craig Robinson – Rider

Jason Simmons – Rider

Chris Waixel – Rider & Organiser

Karen Waixel – Support Crew (Hamilton)

Wayne Waixel – Support Crew (Hamilton)

Matt Young – Support Crew (Hamilton)

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Our daughter Georgia was born in December 2004.  She was born with part of her brain undeveloped, which resulted in severe sensory integration dysfunction and Cerebral  Palsy.  She is unable to walk or speak and has great difficulty with sensory feeling in her body.  It means that any daily function or movement is compromised and extremely difficult.  We, as parents can help her with specialised equipment and therapy to complete some day to day activities, but in reality, she will need full-time care for the rest of her life.

Some of the equipment and therapy that we require to help Georgia is extremely expensive, and the government assistance we currently receive is not nearly adequate to cover all of her needs.  Specialised positioning equipment is needed to ensure that Georgia’s spine and hips grow correctly to avoid surgical intervention as she ages.  This positioning and seating equipment also helps her to learn at school as she does not have to concentrate on controlling her body.

For the second year, we are, with the help of a family friend Chris Waixel entering a team of riders in the 2012 Murray-to-Moyne Cycle Relay.  The team of riders will travel from Echuca to Port Fairy over two days in an attempt to raise money for Georgia’s therapy and equipment costs.  Georgia currently is in Grade 1 in our local primary school and attends the Cerebral Palsy Education Centre’s extended care program for school aged children.  With the ongoing assistance of the wonderful therapists and staff at CPEC, we can continue to give Georgia a better quality of life. But we need help.

We are looking for sponsorship of the Ride4Georgia team, and also individual donations.  If you can help in any way, please click on the donate button. Please also pass this gofundraise site around to your friends and family – via Facebook, Twitter or email. For more insight into our world with Georgia, feel free to check out our blog at https://sgmackie2304.wordpress.com

Thank you so much!

Sue & Ken Mackie

CPEC Family Fun Day

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Today we enjoyed another lovely family fun day at CPEC.  It’s always a great opportunity to meet other families from CPEC who we haven’t met through our time there, particularly because most of the families who attended today were early intervention families.  There were baby farm animals, an Easter egg hunt, craft and painting activites plus a face painting fairy!  The weather was beautiful and we enjoyed a picnic lunch while the girls played in the cubby house at CPEC and enjoyed patting the animals.  Georgia & Sienna have both got a love of animals, and they always enjoy a chance to get up close with them even if the chicken did poop on Georgia’s tray and Sienna almost squashed one of the baby chicks…

 

A New Year…a fresh approach to school

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Georgia on her 1st day of Grade 1

It’s been a while since I posted anything and we have so much to report from last year that it is hard to know where to begin.  Georgia recently started Grade 1 and so far seems to be enjoying her new class. She has a new teacher and two new aides, with her main aide Zoe continuing with her. Last year was a bit of a rollercoaster.  The first term of prep was a bit hard for Georgia as she met many new faces and the challenges of different rooms and longer days meant she was a bit overwhelmed at first.  In the beginning of the year, prep is just like kinder, lots of play based activities and freedom to explore and investigate.  It is also great for getting to know your classmates and the different teachers and staff of the school.  The classroom is also visually very busy, which I believe was a bit of sensory overload. Consequently, towards the middle and end of term 1 Georgia was showing tiredness and because I had left (I stayed with her for the first few weeks to help the aides learn about Georgia’s needs) her behaviour started to go downhill.

Second term was much better, Georgia seemed to settle down into school routine, and the changes over the days did not seem to bother her as much.  All in all, I was thinking that school life was going to go well. Mid year break came and Georgia became quite sick over the holidays (only a cold, but it seemed to linger so long, in fact when she was due to go back to school she was so ill I kept her home for the first week).  It was during this third team that I started to worry that perhaps school life was going to present some challenges for her that we hadn’t anticipated.

All through her life, Georgia has had trouble socialising.  We have always worried that she wasn’t particularly interested in other people.  It is part of the reason that we had a sibling for her, so that she wouldn’t become unnecessarily ego-centric.  We were expecting by the third term that she would be seeking a few friends, interested in saying hello and goodbye at least.  There were quite a few girls from her class that were friendly with her, wanting to know all about the equipment that she brought to class and wanting to be with her at recess and lunchtime.  Unfortunately, she was still pushing people away from her if they got to close to her chair, and was only interested in laying down in the library with a story.  We understand that Georgia will probably need help with making friends anyway, but it will only happen if she is willing to try it.  So far, school has not made it more desirable for her, she still prefers her own company.

By the end of third term, Georgia was having tantrums in class and her behaviour with her aides was deteriorating to the point that they were becoming stressed.  We know that for Georgia, communication is the key to her feeling confident.  Because she uses a PODD book with partner assistance to communicate she needs to feel that the partner understands her.  This is a relatively easy task for us as her parents, as we obviously can read her gestures and facial expressions even before she uses the book.  But for her aides at school, this is a much harder proposition. Zoe was becoming increasing adept at using Georgia’s book, and it was obvious that Georgia was quite comfortable with her, but the other two aides had a harder time.

I started to worry that because she needs so much sensory input and output to concentrate a  mainstream environment might not be the best option. The school is just not equipped with the facilities and equipment on hand for her.  Because of this, and because her socialisation with her classmates was not improving, we started to look at other options for schooling. I also worried that perhaps she had Autism Spectrum Disorder.

At first we looked at a few specialist schools, one in Mount Evelyn and one in Croydon.  Both facilities were ok, Mt Evelyn only 10 minutes away. There were pros and cons for both schools, but the main things I found were that both schools had a swimming pool, a separate physical therapy room and facilities especially set up to cater for all sensory needs.

Obviously for us to move Georgia out of her school to a specialist environment (even part-time) we would need to have her communication needs met.  Mount Evelyn was doing some fabulous work with their communication system, but it was still behind the programs that we use from CPEC.

With a PODD book and consequently a Dynavox or voice-output communication device, Georgia has the ability to form sentences and initiate a conversation.  Even though she is not yet at the stage where she can do it, she still has the right tools when she is able to.

At both Croydon and Mount Evelyn, the communication was still choice based. For example the children are given a choice of two options, then they are expected to choose one.  This is fine if they are happy with the two options.  But what if they aren’t?

I could see that at both schools Georgia would like some aspects of going to school. The classes were much smaller (only around 8 children in each class) and the curriculum seemed to be secondary to the sensory and physical needs of each child.  Both schools required an IQ level of below 70.  Georgia has never been able to be tested because of her complex communication needs, but I know that she has intelligence. I worried that she would not learn anything at these schools, just love going for a swim and playing on the sandpit.

In the end, we decided that we would keep her at her mainstream school for at least the next 6 months and with a change of aides, and a new teacher, perhaps she would improve.

To be honest so far, nothing has changed.  We aren’t having the tantrums, true, but she still isn’t seeking friends yet. I still have my doubts, but I am willing to take the professionals advice that we need to give it time. I am still investigating the Autism diagnosis, and there seems to be some conjecture with her therapists that it may well just be sensory integration.

I’ll keep you posted.

Fundraising – 2011

In 2011,  we are fundraising for the following equipment for Georgia.

  • Dynavox VMax + (an electronic communication device).  Approx $17,000 AUD (includes mounting kit for wheelchair and also school table). 
  • Swivel carseat Approx $4,000.00 AUD
  • Apple I-Pad for home and school based activities.  Approx $1000.00
  • Boardmaker Plus! v.6 Approx $800.00
  • Arm & Leg Wraps (for sensory based input and stability) $150.00
  • Dynamic Second Skin Support Suit $1,900.00

We will also need extra funding for therapeutic services outside of school funding as the amount allocated by the Australian Government will not cover a full year of therapy.

FUNDRAISING EVENTS FOR 2011

We are running three fundraisers in 2011.  The first is “Georgia’s Auction”, afternoon on March 20th where we will be auctioning off items in the hope of getting our fundraising account up and running.  There will be live music, raffles and a light afternoon tea provided.  Some of the items we already have to auction off are: A 40″ LCD Television, a Coffee/Espresso Machine, a portable fridge, a flying lesson and golf games.  We are hoping to get some accommodation packages and beauty packages also.  If you have any items you would like to donate to the auction, please contact me.  We are looking for holiday packages and major items such as electrical goods, plus small giftware and gift vouchers etc for the smaller silent auction.  A huge thanks to my friend Michelle who has volunteered to run the auction and already put so much effort into it. Continue reading →

Hello world!

Georgia Alise Mackie - Aged 5

Welcome

to the very first posting on our new blog!  Our aim for this blog is to share with our friends and family the journey through life as we see it as the parents of a child with a severe disability.   Our daughter Georgia is 5 and a half years old and has Cerebral Palsy.   We welcome your comments and hope that as you read through each posting you will come to have a greater understanding of CP and the associated disorders.