Marion tells us about her story of expatriation with Nathalie, her daughter with special needs.
I am from Germany, my husband is Canadian and we have two beautiful girls: Alexandra, a normal developing 13 years old and Nathalie, now 10 ½ years old, who has a rare genetic disorder called deletion 3p25. At the time we got the diagnosis, Nathalie was 7 months old. The hospital could only find 34 more medically reported cases, and so rare is her syndrome that it doesn’t even have a specific name.
When Nathalie was 2 ½ years old, we decided to start our life overseas. At this time we knew that if she didn’t have any major medical needs, she did need a lot of therapy to support her overall development. We left Ottawa, Canada, and moved to Kigali, Rwanda, with a 2-years contract. Conscious of the fact that in this particular African country access to therapy would be extremely limited, we still dared to go. I am myself a physiotherapist and with the support of a great colleague, I had already worked a lot with Nathalie in Canada.
In Rwanda we had a big house, with a garden and a lot of staff… watchman, gardener, cook and maid and after a while a nice nanny who helped with the daily chores. As I continued working with Nathalie, 8 months later a British speech therapist luckily moved to Kigali and helped me working on Nathalie’s speech and fine motor skills. In the second year of our posting Nathalie went 3 mornings a week to a nursery with normal developing children. Either our nanny or I had to stay with her. But it was obvious that she needed a more structured program. In summertime every trip back to Canada was packed with assessments and intensive therapy sessions.
After 2 years in Rwanda, we moved to Manila in the Philippines, a city with 15 million inhabitants. It took me a while to find a center with well-trained therapists. Again a wonderful nanny entered our life, a lovely woman who even used at home some of the ideas suggested by the therapists. After changing the kindergarten once, Nathalie was eventually attending a school for kids with special needs, four times a week in the afternoon. At that time Nathalie started walking on her own or just holding on to one finger. Her progress was clearly a result of the intense physiotherapy she was receiving there.
Two years later we moved again. This time we packed our boxes for Jerusalem, Israel. We arrived there in February, in the middle of the school year. No school had any budget left to accept her. We had to wait until September to get an appropriate place in a school. This time we had to apply through the administration of the city. Luckily I found an organization of volunteers, which guided me through the system and even accompanied me to important meetings.
But the greatest discovery during this posting was an institute which has developed a different approach to improve the cognitive abilities of children with special needs. I had read years back in Canada about the method, which was developed by Professor Feuerstein. We managed to have Nathalie attending the school three mornings a week, with 3 to 4 one-on-one-sessions. The therapy included speech therapy, ergo-therapy and sessions with teachers trained in this method. I always accompanied her and watched her progress with joy. I learnt a lot about the capacity of Nathalie. Fortunately the school didn’t complain about her being absent during three mornings a week.
A year later I found a stable for therapeutic horseback riding. Overcoming patiently Nathalie’s resistance, in the end she actually loved to go there once a week. For her this is a great method to get her working physically and improve her balance. For 3 ½ years our little one had quite an elaborate program, which helped her participating more actively in daily life.
Now we are in Geneva, Switzerland. Through our experience of moving so often we had learnt that we had to start early to search for a suitable school for Nathalie. After we had contacted the responsible office in Geneva – exchanging e-mails, reports and videos – I flew to Geneva to meet the headmaster of a local school, which seemed a potentially good one for Nathalie. And so it was that in September Nathalie again entered a new school and again had to integrate (as well as her sister, let’s not forget her!). With this school I see almost nothing of what she does during school time, which is pretty new for me. Although the main language is French (a new language to her) and only the therapists speak English with her, she leaves the house every day with a big smile.
I still feel we are in the phase of ‘settling in’ with her. I am working myself through the jungle of administration because now we live in a well-structured country.
The big question for me is always: ‘Would Nathalie be more advanced had we stayed in Canada?’ At the end this is hard to answer. I am personally happy that she (and the rest of the family) has been exposed to so many different cultures, methods and approaches. Every country, and not only African or Asian ones, has different ways to deal with children and adults with special needs. Even in Europe differences are huge and this is often based on the history of each country.
I confess that I am getting tired, frustrated and angry – especially after our positive stay in Jerusalem – to deal with therapists, headmasters or doctors, not to talk about health insurances. But in Canada we would have similar problems. It is tiring over the years to start always from the beginning, to understand the structure in a country and to find appropriate structures for her. I can compare it with her sister and see how ‘easy’ it is for her to settle down. I am also worried about how and where she is going to live when we won’t be able to support her as much as we do now. This is all not yet decided. In the summer she will turn 11 and time flies by.
Would I do it again? I say yes. Nathalie is a very happy and sociable girl; she is curious and loves to be with people. In Rwanda and the Philippines I could share the task with wonderful nannies and have some time for myself. In Jerusalem I learnt much about her capacity and it opened new doors for us. But the decision to live overseas with a child with special needs is very much based on the child itself, how much a family can handle and a bit of luck to find the right people and therapies.