Our experience :: living in NC with a disabled child (part 3)

Hello! This is my third post in a series which attempts to lay down some context and tips on our family's personal experience of relocating from suburban Australia to la brousse in northern New Caledonia. My previous posts here and here covered school. This time I'm moving on to therapy and medical care.

The issues of therapy and medical care were top of mind for us when making the decision to come to the middle of the Coral Sea. Our son Jack needs regular physiotherapy to attend to his cerebral palsy. Although Jack has full oral control and communication skills, his condition means he can't walk independently and has poor limb and trunk control. He needs assistance with most activities including toilet and showering, mealtimes, transferring from lying to sitting to standing and in the classroom.

Allor...

Therapy and medical care

We have been extremely fortunate that we were recommended to an excellent kinisitherapeute in the nearly town of Koné. Dom and her holiday replacement Olivier have both developed a great rapport with Jack and their methods of working have helped Jack to develop confidence and strength. 

First day with the new wheelchair in Noumea

For us there has not been much difference in cost of physiotherapy. In Australia we would be covered by the BetterStart system (given the allocated allowance for therapy) for Jack until age 7; here our expat insurance allowance covers most costs as well. The main difference is that we've not been able to get hydrotherapy or group therapy here so we do without and occasionally get into the pool to give Jack a good workout.

Disability equipment, especially paediatric equipment, is not readily available sur le caillou so all specialised equipment we have such as walkers, wheelchairs etc have been sourced from Australia.

Fortunately we've not needed to seek serious medical aid for Jack in New Caledonia. We are lucky that Jack doesn't suffer from complications such as epilepsy or heart problems. However for school vaccinations, chest infections and the like we've visited the local medecin, or general practitioner in our local town of Pouembout. 

The system for most doctors here is first in, first treated. Local GP's don't have small armies of receptionists taking appointments and frowning when you are late; instead, you take a seat (if there's one available) in the waiting room and wait. And wait. And wait. (Take a book. A good one). You take note of who's in the room when you arrive and who comes after you and wait your turn.

Finally (after you've finished your book and read every trashy French magazine available and come to the conclusion that French trashy mags are just as much a waste of time as Australian ones) it will be your turn. You will be rewarded with a relatively cheap but professional appointment. I have never come across a doctor who didn't speak English and I've always been happy with the medical service provided.

Our lovely local doctor charges about 4800f.  Payment is directly to the doctor in cash or cheque (no credit cards, take your cheque book. Nearly every business accepts them and in fact they are extremely commonly used at the supermarkets. Good practice for the tricky spelling of French numbers. The only exception I can think of is service stations - cash or card only). 

The other benefit of the French medical system is that pharmacy medicines seem to be cheaper than those in Australia. When my daughter had a chest infection our local doctor wrote a prescription for paracetamol, a nasal spray, cough suppressant and antibiotic. I was alarmed, thinking the whole lot would probably set me back $80. Imagine my surprise when it all came to less than the equivalent of $20. Again, the service and assistance I've had at every pharmacy I've been to on the island has been excellent.

The only interaction we've had with the hospital system was actually for myself, for the urgent treatment of kidney stones. The doctor I saw was extremely proactive and made a special effort to contact the sonographer in the next town to make sure he was available (only one in the region). She then contacted the private hospital in Noumea to make sure they would be expecting me that evening. I was admitted quickly, immediately connected to an IV and in surgery the next morning. The actual hospital conditions left a little to be desired (another blog post but some funny moments) but the medical care of doctors, specialist, anaesthetist and nurses was efficient.

It's important to note that New Caledonia doesn't have a lot of specialist medical services. For example, I have known many expat women here to have their babies locally but not with the same level of hospital quality they might get in their home country. Those with risky or problem pregnancies have opted to return to their home countries in time to birth their babies to make sure they had adequate medical support.

There is a medical clinic in our neighbouring town of Koné which is also an emergency room. There is a small hospital which also has a maternity section in the small town of Koumac, about an hour and a half to our north. We haven't used either of these services so I can't personally attest to their level of specialist care. The major hospitals, public and private, are in Noumea, over 3 hours to our south. 

We returned to Melbourne for 3 months for the surgery and rehab following Jack's major surgery last year. He had planned double femoral osteotomies which we knew would be sometime during our New Caledonian residency. We have travelled to Australia every 3 to 6 months for regular x-rays and medical and therapy reviews for the duration of our residency here, which is expensive but was always part of our plan. We keep in contact with all Jack's medical and therapy team via email to provide updates or if we need advice. They have all been very supportive and enthusiastic in making our situation workable. We really have been very fortunate.

If you are planning to travel to or live in to New Caledonia it's worth knowing all of this, particularly if you have a pre-existing condition. Pharmacy medicines here have different names and even different formulations so don't expect to easily top up on your own medicine here. For example, one of my medicines is not available in the same formulation here so I top up in Australia when I return, however I find it more convenient to buy medicines such as children's paracetamol here as it's cheaper and available without prescription.

My account can only give an inkling of the therapy and medical care available. The therapists and medical staff we've interacted with have all been excellent which has made our time here so much easier. But certainly each family must make those consideration carefully and with action plans and insurance cover should something go awry. Then you can relax and enjoy the French tropical lifestyle.

My last installment will be about accessibility. À plus tard!

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

So this is the next part of our adventures on a French Pacific island with wheelchairs and walkers. As I write now we are watching the category 5 tropical cyclone Pam leave a path of destruction in nearby Vanuatu as it heads past the south of New Caledonia. The adventure never stops!

If you didn't catch part one, this series of posts is my attempt to impart a bit of firsthand knowledge of what it's like to have a normal life as an expat in New Caledonia with two small children, one of whom has cerebral palsy. It's the type of insight I searched for but failed to find when I did my own research before we embarked from Melbourne, Australia in 2012.

On y va...

Jack with his second aide Cynthia

Going to school (part 2)

Another hurdle we overcame, at least partly, was access to the school cantine - about 20 steep steps. The French school system has the option to enrol for a canteen lunch, which most families do. The alternative is to pick up your children at 11.30am, home for lunch and then back at 12.30. No lunch boxes here, which is probably not a bad idea given the climate (cheese sandwiches and bananas do not do well in a hot school bag, I still have vivid memories.....). 

It took over 6 months to convince the school director that we needed a ramp to enable canteen access. My inquiries up to this point were usually met with typically French shrugs and mumblings of "n'est possible". Unfortunately, even with the new ramp, Jack needed to be taken out the front gate, down the street a short distance where there was no footpath, and then pushed across a sports area to the canteen. A few months later the marie (council) finally paved a footpath as well. So now, although the long route to lunch, it is mainly paved although still quite a bit of muscle-work for his aide.

Sitting outside to listen to a book at school

Jack loves being able to stay at school for cantine. He sits with his class and is served a hot lunch. His aide eats lunch with him and helps where neccessary. After lunch he plays with his friends until classes restart. It's an opportunity we wouldn't have in Australia and we didn't want him to miss it.

The experience  of asking for and finally getting access to a school lunch highlighted the fact that our adopted community had not considered the possibility that wheelchair access might be needed at their school. Many Australians today would find that unusual. I think the resistance we felt in this instance was the rationale that building infrastructure for one child wasn't economical, although of course accessible ramps and paths are for the benefit of all and economics shouldn't come into it when discussing such a basic thing. We also see it as having helped to provide access for not just our child, but future children in the community with mobility difficulties.

This is not the case in all schools here. Two newer schools near the neighbouring town of Koné both have much better accessiblity, including lifts and handicapped parking spaces. My battle to find a carspace at our school to unload and reload the kids and the wheelchair is a weekly lesson in creative parking and muscle-building. It's a private battle that I'm not going to take further. I really can't see a handicapped parking spot being built. Some things just need to be endured!

First day of school this year

Despite the challenges, the sleepless nights, the disappointments and steep learning curves, being brave enough to tackle the French/New Caledonian school system is paying off. Jack speaks French with an accent that melts my heart. His marks in maths are great. He writes in a beautiful cursive that he wouldn't be taught in Australia but which belies his fine motor skill difficulties. He's a wonderful role model for his little sister Nellie who started at the same school last year at the age of 3. This year his reading of French has blossomed, adding to his wonderful English reading skills that we've fostered at home. And he has many friends who love him and greet him each morning with kisses (this is France, people) and cheers.

The next post in this series will be able how we've tackled therapy and medical care in the province nord of New Caledonia. Please feel free to message me any questions or your own similar experiences, which I'd love to hear, below or on the France has Coconuts Facebook page. Á la prochain!

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.

Le Grande Marche de Pouembout.

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

It's been a while...

I have been a bad girl. Neglecting my blog for almost 6 months - the shame!

 

Although it's not like I haven't had distractions. We had a quick visit to Melbourne with Jack for medical visits to organise and do.  Nellie to be enrolled in school. My French Life articles to research, photograph and write. Perpetual internet hassles, which is one of the biggest distractions from writing a blog, where a quick post becomes a whole day headache. I've started drumming with a group of great people. My own health challenges. Blah, blah, blah.

 

 

But now we find ourselves at the pointy end of the year. School will be finished soon and I have to prepare, mentally more than anything else, that my almost-3 year old baby will be joining the chaotic hordes at the local school.

 

 

We had a couple of hours orientation with her in the 'petite maternelle' class a couple of weeks ago, the non-French speaking kid in the room. My head knows she will cope, but I will worry every day until I pick her up at 11.30 each morning. And then, when she doesn't need the afternoon 'sieste', she will be full-time like her big brother.

 

 

She will sing, dance, draw, play dolls, be assertive, follow the pack, eat lunch, make friends. I do worry about the toilets. Despite the fact that she is pretty much daytime toilet-trained, her first attempt at using one of the toilets was a fair disaster.

 

In the bathroom, which resembles a miniature prison toilet block (no seats, toilets all in a row with no privacy walls, round fountain-like washbasin in the centre of the room) she had trouble sitting by herself on the little toilet. Cue mess. Need to work on that. We have a few months.

 

 

Jack, on the other hand, as the only wheelchair using child at the school, will be using the canteen for lunch next year. Again, this presents mixed feelings for me. Firstly because it means he is cast into the crazy, noisy, messy school lunch system, which for a kid who can be picky occasionally, will be interesting.

 

But it also means that he is reliant on his carer to make sure he can manage it - seating, eating, cutting up food, taking his cup from home as he can't use the school ones - plus the toileting. It's a fair job.

 

 

On the other hand, it means half the wheelchair-lifting for me. I can't pretend I'm not excited about that. That bugger is heavy.
 
Perhaps the biggest impact that Jack will have on the school in the next few months is that they will be spending the Christmas holidays building a very big ramp for Jack to actually access the canteen. The school is built on a hill and the school buildings split across 3 levels. Jack's classroom is on the middle level and his carer has to push him up a large ramp to access the classrooms and playgrounds on the upper level.
 

The canteen is on the lower level, currently only accessed by about 20 steep steps. I will be tracking  progress of the new canteen ramp with interest. Jack's time at the Pouembout school will be felt long after he leaves, hopefully helping lots of other people access the canteen as well.

So, into the Christmas crazies. A plus tard!

Maintenant, je suis un étudiant

A milestone this morning as Jack, our 4 1/2 year old son, went to school this morning for the first time.

Now we are Pouemboutians - our first month.

Exactly one month ago, packed to the hilt in our rental car, we pulled into the driveway of our new home just outside Pouembout, New Caledonia.

I had spent the drive telling myself that this was the beginning of a fabulous new chapter in our lives.

"We have to be positive everyday," I told my husband in the car. "Nobody is making us do this: it's our choice. It's up to us to make it great."

Jack was desperate to go to the beach in our first few days.

Bienvenue à Pouembout!

I wrote this post yesterday but was unable to put it up on the blog. Here it is now:

We are here. In New Caledonia. About 3km out of the little town of Pouembout, near Koné, in the Northern Province. Our new home for the new few years, if all goes according to plan!