Friday, 13 March 2015

Our experience :: living in NC with a disabled child (part one)

As our time here in the French territory of New Caledonia comes to it's conclusion I have begun to reflect on how much we've learnt and how far we've come. In particular, how we've tackled the challenges presented when living with a physically disabled child in the somewhat remote reaches of the South Pacific.

As we have almost 3 years of experience to relay (and in particular because I am terrible at self-editing) I'm chunking my words of wisdom (ha!) into about 4 posts.

There is nothing unique about our family except that we happen to have a child with a severe disability and we've temporarily relocated to a French tropical island. I'm not an expert on New Caledonia or disability. My husband and I don't have all the answers and we've certainly made lots of mistakes but are hopefully wiser for the experience to this point. I only share our experience in the hope that it might give some helpful insights and tips to other families contemplating a similar adventure. 

So I decided to put a few thoughts together on the type of information I would have liked before we arrived. In this post: school, part one - actually one of the scarier challenges for me.

But first: some background

If you were to approach me a few years ago and ask if it would be wise to take an 18 month old little girl and an almost-four-year-old little boy with cerebral palsy from the comfortable and leafy streets of Sandringham, Melbourne, to the tropics of a small French island I'd barely heard of in the Coral Sea, I'd probably say have another skinny latte and macaron and get a grip. Your life is great. Consider a holiday in Bali.

Now, with almost 3 years of expat-tery under my belt, I'd  still recommend the latte and macaron but also offer some background of how we've managed - mostly with smiles on our faces - the daily grind in the northern province of New Caledonia (yes, we had to check Google Maps for where it is too. For some reason most Australians are fairly unaware of the fact that France is pretty much on their doorstep).

Dawn on our first morning in Pouembout, New Caledonia
We arrived in New Caledonia, to the tiny, slow-moving farming and mining community of Pouembout in the week our son Jack turned 4, July 2012. Jack has quadraplegic cerebral palsy with spastic dystonia, GMFCS III-IV. At this time he was able to walk with the aid of a small walking ladder or a walker. For outings he was in a pram with his little sister. He couldn't walk independently and was in nappies full time. He had full oral control and no significant additional complications.

As well as the ladder and walker we brought a wooden corner chair, wooden kinder chair and table plus his BodyCycle tricycle and grasp bars for arm extension. We brought a slant board for drawing and a standing frame. He had his AFO splints, arm and leg wraps and a potty as we were toilet-training. 

Going to school

Getting Jack into the local school was a big challenge and an anxious experience for me. We needed assistance from a local organisation that specialises in helping expat families to settle. He needed to have a medical certificate from the local doctor as well as his tuberculosis vaccination, which is mandatory in New Caledonia and is given to newborns here.

Jack's classrooms
I employed the assistance of a friend who translated in all the initial meetings with the school director and class teacher. One of my big concerns was the toilet situation as the children's toilets were small with no toilet seats, which would be unsuitable for Jack to have stability when sitting. Eventually the school remembered that they did in fact have a disabled toilet, only it was used as a janitor's closet, so that was tidied up. We provide a kids seat which sits under the standard seat, and take it home on Fridays for a clean and back to school each Monday.

We also provided the school with a wooden kinder chair which has a lap belt and a slant board to assist with writing and drawing. These were left at school until the end of school year. We also worked hard to get Jack daytime continent before he began school as the school is not equipped to deal with nappy-changing.

Most significantly, we had to organise a fulltime aide for Jack as he needs assistance not just with mobility but with toileting, using books and pencils and play. In New Caledonia aides to the handicapped are provided by Fleur de Vie. For non-French citizens this comes at a price and we were lucky to find funding. Without funding we simply could not send Jack to school and in fact would have had to reconsider the whole endeavour. 

Jack and his first aide, Emmanuelle
Over the years we have had three different aides. Although none of them were specifically trained in working with handicapped children they have all been very enthusiastic and worked well with Jack. 

The aide meets us each morning at the school gate and effectively takes over Jack's care until the end of the school day. She does transfers between wheelchair, walker, desk chair and toilet. She changes his pants if he has an accident (happens occasionally) and helps him in the classroom and canteen. The only thing she doesn't do is teach. The only downside to this system is that if the aide is unable to work then Jack misses school as he can't be at school without assistance. 

Understand that this was also the first time I'd entered a child into a school system. Jack left a wonderful childcare centre in Melbourne which was providing us with 3 full days a week of kinder plus a full-time aide. Leaving there was difficult as we had great support from both staff and other families. Entering him into the Victorian school system and navigating my way through finding an aide, accessibility, equipment etc would have been nerve-wracking enough. But then do it in New Caledonia, in my shoddy French - it was stressful for sure.

One of the biggest mistakes I made was assuming that Jack's teachers had some training in working with handicapped children. We had an upsetting experience later in Jack's first year when I mistakenly assumed his maitresse had him included in the choreography of his class's dance for the school spectacle

The experience left me determined to be closer to his teacher the following year. I made sure to meet with her regularly but particularly when she was planning the class choreography. I really wanted to advise on Jack's restrictions and some ideas to ensure she felt confident and could include him properly. The result was that we were all very proud of his participation, front and centre no less. More importantly Jack loved the experience and was proud of his achievement (you can view his class dance here).

Next post will be another school test for me - getting some accessibility in place for Jack to access the canteen - with mixed results.

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