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.
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?
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.
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