This is another guest post in the Kids With Special Needs Around The World series. Lynn lives in a rural area of France with her husband, a teacher; she's mom to Eva, who's almost 4, and Joseph, 16 months old. Eva has developmental delays, epilepsy and sight problems and an extreme case of cuteness. 
Moving to France from England eight years ago for a teaching job was supposed to be a temporary measure, but here I am still.How life has changed! I now have a French husband and two beautiful children: baby Joseph and our very special Eva. We know Eva is awake in the morning when we first hear her singing to herself in bed, her songs monosyllabic but increasingly melodic.
Her difficulties were apparent pretty much
from birth, despite a healthy pregnancy and straightforward natural birth. We still have no diagnosis and are awaiting genetic results. Although she has very little language, her understanding (in both English and French) is pretty good. She has always struggled to make her muscles obey, first smiling back at me at about 9 months old. Now she can run, grin, is starting to jump and has an uncanny ability
to identify and connect with the funnest person in the room. She has learned to love cuddles and bedtime stories, dancing and music.
When Eva comes in grinning to present me with a fresh egg or a tomato from the garden, I feel a rush of how lucky we are, and all the more so for having wondered if we would ever share so much joy.
I feel she gets a lot from being a big sister; it has taken her a long time to express joy, so
hearing them giggling together is probably the best sound in the world, usually
hiding behind the curtains or sitting on each other. Having a second child was
a wonderful decision for our family. Eva is a huge fan of the UK TV show Something Special, for kids with special needs (although typical kids love it
too) in which the presenter signs along with Makaton as he talks. It's a great
show and they both love it and learn a lot from it.
I have essentially given up work to care for the children, but teach French as a sideline to keep a foot in the "typical" world, where I change no nappies and see no therapists (it helps to keep me sane).
We live in a very rural area, over an hour's
drive from the nearest cities, which has meant a lot of kilometres getting to
appointments and therapy. In our experience, there is a huge amount of special
needs support available in France. Our pediatrician referred Eva for
physiotherapy from about 5 months old, which she continued until she was 2,
when we pushed for her to be taken on by the local CAMSP therapy centre, where
a team of specialised professionals (paeditrician, speech therapists, physical
therapists, psychologist, OT) work in conjunction to support children from
birth up to 6 years old.
At three years old, Eva started mainstream
school four mornings a week, with the help of a lovely and conscientious
one-on-one assistant. Her therapy was transferred to a local therapy centre
called the SESSAD (similar set up to the CAMSP, but the therapists travel out
to work with children at school or at home). Children usually start school at 3
years old in France, although it is not obligatory until 6 years. Since new
legislation in 2005, more children with special needs go to mainstream schools,
with one to one assistance if necessary. That being said, teachers are rarely
trained to cope with the challenges they may face and so the child's and
parent's experience varies drastically.
Fortunately, our little girl's teacher
is inclusive, understanding and intelligent. Not all families are so lucky. The
general policy is for inclusion in mainstream schooling up to 6 years old, at
which point the child's situation is assessed to decide if they would progress
better at a specialised school or in a separate supported class in a mainstream
school. Children with greater needs sometimes start at specialised
establishments earlier.
Eva currently sees 5 different therapists on a
regular basis, some through the therapy centre and some privately (speech and
language therapist, educational therapist, physical therapist, orthoptist,
psychologist and occasionally the psychiatrist too). All this is paid for fully by the state. We applied for this support through the MDPH, a local government body which promotes equal access and controls disability funding and provision for the area.
There is a huge application form to complete each year, as in addition to therapy, the state can provide financial support for families who have reduced or stopped work to care for special needs children up to 20 years of age. They also provide financial aid taking into consideration costs such as specialized equipment, child care and even napes if the child is not potty-trained after 3 years old. As everywhere, there is talk of cuts, with the possibility of reduced services and funding. But I don't find it constructive to dwell on what might (or might not) happen in the coming years. We will cope—what else do you do?
It is hard to define how society treats
disability here, as it is so subjective. When uncomfortable or afraid, Eva
tends to withdraw and tremble, and sometimes gets distressed; I'd be curious to
know how passers-by might interpret it, but my guess is her
"disability" is not that obvious. It becomes more so when she is
elated, as she bursts with high-pitched squeaks, shrills and trills of
exuberance. It's as weird as it is wonderful and the most common expression on
people's faces is surprise. I find children often react most harshly to her
idiosyncratic behaviour, perhaps as they have less life experience to help them
understand her differences.
Strangely enough, the most prejudice I feel to have
encountered is from Eva's therapy centre itself, where some professionals (in
particular the crusty old psychiatrist) seem to hold to an old-fashioned and
condescending notion about the sort of parents that have special needs children.
Their information leaflet bills them as a "Centre for the Intellectually
Deficient," a painfully blunt message, but as the nearest alternative is
50 miles away in the city, we have thickened our skins.
I was recently invited,
and then denied access, to the annual interprofessional progress meeting they
were conducting about my daughter. They left me sitting for 40 minutes in the
waiting room, overhearing snippets such as "The mother thinks..."
through the wall, before being letting me in for a brief summary. The initial
justification was that a) they have always done it that way, and b) the sort of
parents who have disabled children are often part of the problem and therefore
you cannot openly discuss their child in front of them.
As far as I can gather,
they are under no legal obligation to include the parents, and yes, I find that
alarming and wonder if (and hope that) my information is wrong. I wrote to the
director of special services for our region (who chaired the meeting) to
express how distressing and disempowering I had found this deliberate
exclusion. I was bowled over by her response: She thanked me for sharing my
feelings and agreed to change their working practices for the future, so that
it would never happen to another family here again.
It is commonly said in France that being the
parent of a child with special needs is "le parcours du
combattant"—an assault course. I am learning how true this is, but feel
that each new challenge makes us stronger. It is disheartening to have to fight
battles with the people who are supposed to be helping us, but equally
heartening that when you dare to speak up, you are often heard. Last year we spent
three times as many hours in the car going to therapy, for less contact time,
albeit with more organised and informed therapists.
It is an ongoing quandary: Do you sacrifice time and quality of life for marginally better treatment in
the city, or make do with the local guys? We travel further for the
speech therapist, who is excellent, and needless to say, go to the city for the
gamut of neuro specialists. If we relied on the advice and information of the
health professionals alone, I think we would be struggling, but fortunately we
have a supportive network of friends and family who have introduced us to other
approches, like Intensive Interaction—which really opened the door to
communication with Eva.
As I am English and Eva's father is French,
our bilingual family set-up has naturally been a source of doubt and concern as
we realised the extent of Eva's communicational challenges. Her SLTs, the
current research and a host of advisors say we should each stick with our
mother tongue. Her strong receptive language capacity gives us hope, and she
uses PECS in French, which a close friend (Eva's fairy godmother) helped us to
set up and which has been a lifesaver for us all. I still have a sneaking
suspicion that she would be saying more words if we all spoke the same
language, but unfortunately, life is not that simple and those people in the
world who love her most deeply and impact her development most greatly are
fairly evenly spread across two cultures and languages. I don't want to cut her
off from half of her "Go Eva go! /Allez, Eva, allez!" team.
One challenge for me in this rural corner of
France is the lack of support groups. In my experience, people are generally
kind and supportive and I have learnt to avoid or ignore the pitying ones, but
sometimes you need that buzz of recognition, of shared experience. Like when the mums at the school gate
are complaining about how their kids never stop talking and I feel like I'm on
my very own planet. Even meetings like mother and baby groups are a rarity
here, so special needs parents' groups are a tall order. (If there are any readers out there in France, get in
touch!) Connecting with parents online helps me feel less isolated. Our kids are just kids, trying to have a good time, giggle, get messy,
connect, be loved and enjoy life. Like any kids, anywhere.
Previous Kids With Special Needs Around The World posts:
India
Germany
England
Greece
Ireland
Chile
Sweden