Jill Penton-Browne talks once again to Hilary Spronken about the frustrations—and satisfactions —of raising her handicapped daughter in France.
“Sometimes,” Hilary Spronken tells me, with a wry smile, “you just say: why me?” She recalls asking that for the first time just over five years ago when she took her daughter Cassandra to the Lenval Children’s Hospital in Nice. “We’d realised that at four and a half months she was developing very slowly and so we had her looked at. It didn’t take long for them to come up with the answer: she had hemiplegia—a form of cerebral palsy—which meant she might never walk or talk normally. You can imagine—that’s a terrible thing to be told, and even now five years later, when she has made such enormous progress, you get great waves of despair. But you have to buckle down and face up to the reality.”
In practice, what did that mean? “Well, as with any child you’re largely on your own at the beginning. I had to devote myself one hundred per cent to Cassandra and it was tough. First, psychologically. I’d planned to return to work pretty quickly—I’d had executive jobs—but I realised that would be impossible, and that my daily routine would be caring for a handicapped child. That was physically hard, too. With Cassandra’s motor difficulties I had to lug her about a lot. On top of that, when we got the final diagnosis I was already pregnant with my younger child, Xavier, and that meant further anxieties. As I think I said the first time we talked, it’s the isolation that gets to you. I’ve got a very strong marriage but our families on both sides are quite far away—in Woking and Maastricht, to be precise—so we have to get on with things ourselves most of the time.”
But what sort of support do Cassandra and her family get from official agencies? “That’s a crucial point. As the pediatricians made clear to us from the start, it was essential that her motor and speech skills should undergo the maximum possible development in the early years. We’ve worked hard at it and now she’s got Xavier’s input as well but obviously her formal education is very important.” So how’s that going? “In some ways we’re very pleased, I have to say, but it’s a constant battle with the administration. Before Cassandra was able to start school we had to attend a subcommittee of the Commission d’éducation spéciale to decide what was best for her. They concluded she could go to the ordinary maternelle which sounded great. I’d make two points about that: First, she’s got impaired speech but she’s mentally normal and second, at the commission and in all other dealings with the administration, I had the advantage of very good French. Without the language it would’ve been very hard.”
“Medical and educational people have mostly been very good. The first snag came with the former mayor of our village who was totally unsympathetic and only seemed to care about the additional cost involved in providing for a handicapped child, and additional cost there is. Whereas a normal child can go to the maternelle all day, Cassandra has only been able to attend when there’s une aide éducatrice present to look after her special needs. Unhappily, these assistants aren’t available as much as they should be and until recently she has only been able to go to school on a very part-time basis, which means she has lost quite a lot of schooling, and that she can’t afford to do. I suppose that’s what’s so frustrating for me—the commission take their responsibilities very seriously and listen to the neurologist, the physio, the speech therapist, the teacher and me, but there just isn’t enough cash to carry out the decisions properly. At the beginning of the year I was told that she could only go to the maternelle for 71/2 days a month, rather than the normal 16 days. I realised I had to do something. To be frank, I made myself a nuisance. I talked to everyone who could possibly be useful and I made the case for Cassandra to go to a school in Menton specifically intended for children fragilisés par la maladie. It paid off. A few weeks ago I was called back to the commission where I was told she could go to that school—and full time. This could make all the difference to her development.”
Apart from these problems with schooling, how is Cassandra getting on? “At six she’s a small person like any child of her age. She’s got the disadvantages of her condition but we see her growing all the time and that’s very satisfying. Xavier—he’s four now—is wonderful with her, protective and understanding and he’s playing a big part in her development.” And what about other people? “Some are sympathetic, sensitive, others aren’t. What we hope, of course, is that when she moves into the primary school she’ll get on well with other children and above all not be overwhelmed by a sense of being different.” And how has Hilary’s attitude evolved over the past five years? “One thing that has helped is contact with other parents of handicapped children. After that first article back in 1999 and an interview I did on Riviera Radio with Mark Dezzani I heard from several people. I’m still in touch with most of them. As my situation and Cassandra’s change, I’d be happy to get into contact via the magazine with other people who think they have something in common with us.”
From Reporter Issue 94