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.

The end is nigh.....

A few weeks ago, more than two and a half years since being in New Caledonia, a milestone occurred. One of my children was invited to a birthday party from a local kid. It was a modest affair with his lovely friend Felix and his parents were very nice. Even better for us, they spoke English, so conversation was easy and enjoyable.

The sad part is that we are at the tail end of our stay in New Caledonia. We expect to leave in only a couple of months as my husband's contract comes to an end.

As we get closer I feel more sadness and even a little panicky. It's been a challenging and unique period of our lives. We have been transformed from sheltered, myopic city-dwellers, our lives orbited by a cycle of long work hours, reality TV, local news and supermarket wars. We've become more aware of world politics, the reality of life on a south Pacific island, finding friendship, trying new things.

I've learnt to not be alarmed when a complete stranger picks up your baby and kisses and plays with them. We're confident that our kids are getting a good education at the local school, even though the infrastructure and technology is far less than in the average Australian primary school. I cherish the fact that Jack is greeted each morning by his friends with kisses or, as was the case yesterday, with nose rubs by his best friend.

I miss the aisles of fresh vegetables in Australian supermarkets, decadent with more that one variety of potato and with green vegetables luxuriating on beds of ice. Ice! But then, having only a simple selection of fruit and vegetables does make life easier. At least, dinner planning. The only fresh leafy vegetable in my local supermarket this morning was lettuce. So it's salad tonight. No poring over glossy foodie mags or trawling Pinterest for dinner inspiration for me tonight.

But we do have the luxury of local prawn farms. I can buy a kilo of frozen local prawns at my local supermarket (with the fresh lettuce) any day of the week for about A$25. The price is on par with Australia and the food miles less than a Melbourne market.

I've learnt to appreciate the struggle that visitors and migrants to Australia have when learning and understanding English. One of the reasons I find it hard to learn French here is that people speak so quickly and use a lot of vernacular. In turn, those local who speak English with me say I do the same. It's a hard lesson learnt and a habit difficult to break.

We've learnt to appreciate French wine. Why wouldn't you when it's cheap and sold in the supermarket? But the local beer......well, we do miss Aussie beer. But you drink what's available. And 'Number One' is stupidly easy to order.

But there's no returning to the navel-gazing people we once were. Being an international tourist doesn't do it. I did that. And I still didn't get it. But I do now. About how occupying all of my preoccuations to whether we need pay TV, or what haircut I should have, at getting the cheapest petrol, whether to buy a Thermomix.

The only pay TV available to me is mostly in French, I haven't cut my hair in 6 months, petrol prices are regulated here and I don't have enough storage for a Thermomix. But I do care that there is only a couple of orthotists in all of New Caledonia, that the world heritage-listed reef here is being rapidly destroyed (a fact ignored by most of the world) and that incest is prevalent in indigenous tribes here, as it is in Australia.

So our next venture, whatever it is, we be an ADventure. We will make it so. By our new outlook on life, our approach to the local community and our understanding of the opportunities life holds, no matter where we live.

New Caledonia gave us this moment.

Lately there have been mixed feelings in our house. We learnt a few weeks ago that my husband's work contract will expire in April 2015, so we will be moving on from New Caledonia.

This has prompted in me a range of emotions, and each day I oscillate from excited to nervous to regretful to quite sad. This is a reflection of the challenges, opportunities and joy felt since we moved here in July 2012.

Take my son Jack as an example. Jack turned 4 the week we arrived. He has spastic quadraplegic cerebral palsy with dystonia. He needs assistance or intervention to do most things from the neck down. He requires specialised furniture, a wheelchair, walker, footwear, commode, bike, stroller and physical therapy. We left a very supportive family, friends, medical and therapy network to come to a country where wheelchair access is haphazard and experienced therapists difficult to find. The sight of a child in a wheelchair or walker is rare, especially in the small farming and mining community where we live.

We weren't sure if we were being brave or just plain irresponsible about our son's health and potential. In fact I'm pretty sure there were many who thought the latter.

One of the driving factors for us, assuming we could address Jack's physical needs, was the opportunity to integrate both Jack and his little sister Nellie into the modest, local school and experience French language immersion in a mixed group of cultures. There have been some frustrations with organising an aide, plus access within a school not used to wheelchairs, but it has paid off in ways I couldn't have imagined before. We have discovered a community intrigued and surprised by Jack, but proud to include him in their number.

It's his ability with picking up French which constantly delights us as parents. His accent is delightful. His confidence defies his genes. And he just plain enjoys it. Bliss.

This morning out of the blue, he sang me a Christmas song he learnt at school. I asked him to sing it again so I could record it and share.The next challenge is how to retain and build on this lovely new skill he has once we leave the island....

When family visit sur le caillou :: Pt 3

This is the final part of our short sojourn with visiting family members a few weeks ago.

When family visit sur le caillou :: Pt 2

We recently spent two nights on the amazing Isle of Pines. We were so lucky with the weather, which was mild but sunny. It allowed us to enjoy the stunning beaches for a while, and get our toes into the soft, fine sand. We stayed at Oure Tera, on Kunamera Beach, on the south coast.

When family visit sur le caillou :: Pt 1

 

The last few weeks have been busy. Rob has been busy with work, the kids right into school, and just as school holidays arrived, I unexpectedly ended up in hospital for a few days. We needed a holiday!

Le Grande Marche de Pouembout.

Today is the Grande Marche in Pouembout. Enjoy these sunny images of Province Nord on display.