One expat mummy speaks about raising her special needs daughter while managing the challenges of a mobile lifestyle.
Most of us who are expats can recount times when we have felt isolated in an alien land. It stills happens to me now as an Englishwoman living in the US; though my husband is American, and I've lived here for three of the last six years – now as a US citizen.
Strangely, I am glad to have these moments of feeling out of step with those surrounding me. It gives me an inkling of how my daughter feels every single day, living with Autism Spectrum Disorder (ASD).
As an expat, I've learned to use my own experiences to better understand her and to navigate the system of obtaining a diagnosis and treatment, parts of special-needs parenthood which always seem a bit foreign no matter how hard I work toward fluency.
Diagnosing your special-needs child while living abroad
We had just returned to the US from three years in Luxembourg when I began to notice that my daughter had problems connecting with others. Initially I believed her disconnect was a result of being surrounded by children who spoke various different languages, but it soon became clear that her social difficulties ran deeper.
A local paediatrician dismissed my concerns, but weeks away from our next assignment, I wanted peace of mind before making another move. Had we been living in my home country (the UK), I would have needed a referral to get on a waiting list to see specialists. I expected that the whole process would take several months.
However, using the American healthcare system, within mere weeks my daughter had been seen by all the necessary specialists. We found a speech therapist who not only worked with other diplomat's children, but who also had extensive experience with autism spectrum disorders. We were referred to a multidisciplinary team who evaluated every aspect of her development. I couldn't have wished for a more thorough evaluation, and was delighted that the whole process took weeks rather than months.
A challenging mobile lifestyle
Though the process of diagnosing my daughter's disorder was an example of a positive experience utilising another country's infrastructure, in reality, living overseas is not without its challenges, and those challenges increase ten-fold with a special-needs child.
For one, it is difficult to adequately gauge the quality of service providers from another country. Many providers don't live up to the statements on their flashy websites, and often you're unfamiliar with loopholes and exceptions to the rules.
In our case, we were seeing world-class specialists for our daughter's diagnosis, and I knew that we would still be on the bottom of a waiting list had we been in England. But there was a downside: those specialists came at a price. Some were covered by our insurance, but others weren't. I soon discovered that her diagnosis was not recognised as a medical condition, and many of the recommended treatments were out of our budget. Now I was worried, because if I lived in the country with the best resources for my child's condition, but we still couldn't access them, what should we do?
Furthermore, I learned that international schools are under no obligation to accept children with disabilities, let alone provide adequate services. Even when all parties act in good faith, sometimes the process just breaks down. In some destinations many English-speaking teachers and therapists are themselves expats, and if they suddenly decide to move on, a replacement may be difficult to find.
In the UK and US, children with disabilities are generally mainstreamed into classrooms with their typically-developing peers. In other parts of the world, special-needs kids are taught in self-contained classrooms, or dedicated schools to provide the required level of support.
One way is not necessarily better than the other, but culturally more acceptable in different parts of the world. We have to find the way that works best for our child. I'm trying to keep this in mind as we prepare for our next move to Johannesburg.
An expat-motivated special needs solution
At around the time when I realised the limited nature of our insurance plan, I began contacting other expat parents with special needs children for their advice. Almost everybody reported that they believe their child thrived in a nomadic lifestyle. Parents who struggled to afford adequate services in their home country were able to create a tailor-made program for their child.
I learned that sometimes we can't know all available resources until we're in-country, and are pleasantly surprised. What's more, those with children with an ASD reported that their children seemed more flexible and less routine-dependent than their peers, who had remained in the same place.
Beyond all else, it's important to realise we have our expectations of what we want to provide for our children, and oftentimes those expectations are based on our home culture.
The expat experience is about being adaptable and flexible, but also striving to find a way of life that meets our needs. Special-needs parenting is exactly the same. Nobody ever said this journey would be easy, but it will always be worth it.
