I grew up in Reading, a London commuter town, but it’s not the most exciting place to call home. So when my Scottish husband’s work gave us the opportunity to move abroad on an expat contract, we jumped at the chance. Typically, we move every three years to various international locations, the maximum stretch being six years. Many people tell me how lucky we are and I can’t disagree. However, I wonder how many people would have made the move given our circumstances?
Our daughter, Kezia, was only 6 months old when we began our expat journey. But she had already given us a whole bag of surprises by then.
I had experienced years of infertility in a previous relationship, so the pregnancy itself was a (very welcome) shock. We found out at the 12-week scan that the nuchal fold (a measurement at the back of the neck) was very high. It indicated a 1-in-3 chance of a chromosomal difference and a 1-in-5 chance of physical issues, with a congenital heart condition being most likely. And she was a girl! Biggest shock of all as we were both convinced we were having a boy.
It’s hard to explain how it feels to get bad news in a scan. Until then, I had this rose-tinted excitement: I’d be able to see my baby and have a photo to show people! I knew it was routine to wait until after the 12-week scan to announce a pregnancy, but didn’t really equate it with there being a chance something might go wrong. You have this awareness that it happens to other people without believing it will happen to you.
There is a moment when the atmosphere in the room starts to change. The sonographer chats less and her brow furrows a little. You bite your lip, your heart starts to feel heavy and your stomach turns. She then says to wait, that she will be back, returning with someone who introduces herself as the manager. With a strained smile and a quiet efficiency that screams problems, the manager focuses intently on the screen before breaking the news that something is amiss. She hands you a pile of leaflets about “what this means” and “what happens next” and tells you to come back tomorrow to see the specialist. You dread future scans as you steel yourself for more life-changing news.
Finding out something is different about your baby is devastatingly painful. At 12-weeks gestation, your entire, idealistic vision of the future is dashed. You have to try to rebuild hope and positivity in a new and unfamiliar world. It doesn’t matter how accepting you are and how much you love that child, you have to grieve for the image of the child you have lost. Having the antenatal diagnosis was helpful because I was able to work through my darkest emotions before she was born. By the time I felt her kicking at 22 weeks, the worst of the grieving was over.
What Not To Say And Do
I’m not anti-abortion. In fact I’m very much pro-choice, but MY choice was that I would keep the baby no matter what. For all the soul-searching heartache, I never loved Kezia any less nor wanted her any less for coming with a little bit extra. I didn’t realize at the time that I was in such a minority for having those views. A high number of people (between 92-97%) opt to abort if they have an antenatal diagnosis of Down’s syndrome. The introduction of non-invasive testing, partnered with a usually negative approach from medical staff, means the figure will rise. I’m a member of a U.K.-based campaign group trying to ensure a balanced perspective is given to expectant parents so they can make a more informed choice.
My friends and family have been so accepting and loving towards Kezia from the outset. You need people to acknowledge your grief, not offer falsely optimistic platitudes. You need people to listen and not minimize your feelings. You need them to either ask questions or educate themselves about Down’s syndrome so they’re less likely to say something misguided in an effort to comfort. You also need people to treat the pregnancy and the baby exactly the same as they would any other. Say “Congratulations!”, say how beautiful the baby is from your heart. Cuddle and coo and bond because that baby will grow up to be phenomenal and your life will be better for having a person with special needs in it. If you know someone else who has a kid with special needs, put them in touch. It’s a big community and we are always willing to be a support.
There’s not a single mother on earth who wants to hear that God gives special children to special people. That is complete poppycock and you should never, under any circumstances, say it to anyone. It’s about the most offensive thing you can say. Also, don’t tell your kids not to stare at someone with special needs. It’s a natural reaction and by directing their attention away, you’re innocently adding to the stigma. Instead, smile at the person and to the people with them. Encourage your kids to say hello by being warm and welcoming yourself. Show your kids there is nothing to be afraid of and role-model positive, friendly behavior.
The Birth And The Move
I got made redundant from my job as a support worker when I was 6 months pregnant. In hindsight, it was a blessed relief as the diagnosis had taken its emotional toll on me and this allowed me to take early maternity leave, wallow in self pity a bit and eat lots of cake.
Kezia was born by planned C-section in June 2012. She was in the hospital for the first couple months because of the heart defect. Due to hypotonia (low muscle tone) linked with the Down’s syndrome, Kezia couldn’t breast- or bottle-feed so was tube-fed. Plus her heart condition would require surgery at some point. Luckily, she didn’t have to have open-heart surgery then as we’d originally thought.
Having your child hospitalized and severely ill is incredibly traumatic and it’s hard to keep any sense of sanity. Doctors controlled all aspects of life from what she ate and how often to what medications were administered and what other medical interventions took place. But it’s even more traumatic when you’re finally released and have to do everything yourself. No more security of a full medical staff at the press of a button. Which is why when we were offered the move 3 months later and actually went through with it, I think I’ve earned the word “brave” rather than “lucky.”
Our first posting was in Madrid, where an efficient medical team helped us wean her onto food and get rid of the tube. They also performed the procedure to fix her heart. We attended regular sessions with the local Down’s syndrome foundation to help promote her development and strength—until we were moved to Croissy-sur-Seine, in the western suburbs of Paris, right before her third birthday.
Becoming Paris Expats
Living in our third country, with a third language, in less than three years, presented us with a dilemma. Kezia was practically nonverbal and we were trying to get her to communicate more by focusing on English and Makaton, a simple form of British sign language. Local interventions were unsurprisingly available only in French. We could travel to the center of Paris from our leafy suburb to possibly find something in English, but I found out I was pregnant the day we moved, so the cost and effort seemed too great.
It is exhausting trying to perform even basic tasks in a new country and a different language. Doing a supermarket shop makes your head hurt until you learn about new French products (or source the home comforts you never knew you’d miss). Trying to maneuver your way around a new bureaucracy and jump through all the given hoops sometimes feels like an insurmountable obstacle. There are many things that enrich our lives: travel, experiencing new cultures, friends from all over the globe, private schooling, not to mention that Kezia understands Spanish almost fluently. But the energy drain of trying to access support, assessments and treatment—setting it up from scratch on a fairly regular basis—is completely soul-destroying. I often daydream about how simple our lives would be had we never embarked on this adventure. Better the daydream than regret, though.
We are expats. We move frequently and we will, sooner or later, be starting a new battle in a new country in a new language. It’s how it is. People can envy the perks without acknowledging the pitfalls, but it’s a far-from-simple lifestyle. When something good happens, you appreciate it all the more.
In September 2015, Kezia began her academic journey at Malherbe International School in Le Vesinet. It’s a small but diverse environment where they have experience educating children with special needs. Classes are Montessori-based, which is excellent at identifying and supporting individual goals. Her teacher was spectacular and Kezia quickly settled in to school life.
Malherbe is the best thing to happen in Kezia’s French life. Friends with children in the state school system have reported a variety of issues, from petty annoyances to significant concerns, and I know a few are leaving France to live in other countries—purely because of their dissatisfaction with education. There are plenty of positive stories, too, but I fully appreciate how inclusive Kezia’s school is. Malherbe and its phenomenal staff offer a haven of normality, acceptance and inclusion. There is no doubt that Kezia is a valued pupil and the staff have gone above and beyond to support Kezia and me. The school is a happy place for both of us.
As June approached and Kezia’s 4th birthday planning was underway, we realized she didn’t need more “stuff” and the greatest gift we could give her is communication. Her new teacher this year went to the UK for Makaton training to better prepare for having Kezia in her class. With the agreement of the school, we decided to raise money in lieu of presents and have someone teach sign language to Kezia’s classmates.
I was hoping to raise €100 so we could get a local speech and language therapist with basic knowledge of Makaton to teach a few signs. We reached that target by the end of the first day and eventually collected just over €1700!
With a much more generous budget, we were able to ask a Makaton trainer for a program of events across the whole school: Workshops for pupils, staff and parents with the aim to get as many people as possible certified and to make Malherbe the first “Makaton-friendly” school in France. We’re also able to purchase software that will give the school access to a library of signs, symbols, songs and games to incorporate into future learning.
The four days the tutor was here were long and tiring but more successful than I had ever hoped. Kezia’s vocabulary has increased enormously in a few short days. Teachers, parents and students have been using Makaton with Kezia and each other. They’ve embraced their new “Makaton-friendly” status with plans to keep the momentum going. I saw two much older pupils from the school run up to Kezia and sign, “Hello, how are you?” with huge smiles on their faces. I couldn’t have been prouder. Kezia may have been at the top of the class for once, but opening up a whole new level of understanding across the school has given me more happiness. They are communicating. Teachers will be more attuned to Kezia and she will grow more confident as she’s better understood and responded to.
We don’t think Kezia will use sign language forever. She is using more and more words to communicate and hopefully the sign language will diminish, but right now it allows her to express herself freely without relying just on sounds. It’s frustrating for everyone when communication is limited. The Makaton training lifts the barriers, not just for Kezia but for future pupils who may benefit from the use of sign language to complement other forms of communication—whether it’s from a speech delay, learning difficulties or to help them learn English as a foreign language.
When you have a child with a disability, you get used to everything being a battle. You don your armor in public against stares and daft comments. You prepare to appeal decisions by authorities that arbitrarily refuse to help—even when the need is obvious. You encounter individuals and organizations whose attitudes and policies make it abundantly clear that they believe your child is somehow less of a human being because of her disability. You have to challenge ignorance and be an advocate for special needs as a whole—not just for your own child. You have to continue fighting a war you know you will never win, but you struggle on because it’s a war you are not prepared to lose, either. Being a special needs mum may turn you into a warrior, but the victories are worth every minute!
Malherbe International School
UK Makaton charity
Future of Down’s
State Support (in French)
Centre de Protection Maternelle et Infantile (PMI)