Last week I was very privileged to attend the FCEI (Family-Centered Early Intervention) Congress in, Bad Ischl, Austria. This was a platform for parents, professionals and deaf adults to meet, share and learn from one another. This was quite an experience for me as it marked my first venture off the African continent. There is not much in terms of parent-led support for families of deaf children in South Africa, so my primary intention was to connect with and learn from other parents from across the globe who have “been there and done that” as far as pioneering parent support programmes go.
During the flight on the way back home, I re-lived some of the conversations and experiences in my mind. I jotted down the odd key word or phrase, that reminded me of a particular conversation or person, in one of my several note books in which I had crammed as much info and ideas as possible during the course of the week. The moments that were particularly memorable for me were diverse…from spending an afternoon overlooking the snow-capped mountains and emerald valleys of lush Austria with a special friend and indulging in copious amounts of decadent ice-cream, to sharing thoughts, dreams and challenges with people from all over the world. The seminars and lectures were incredibly informative and satisfied the part of me that appreciates academia.
It was however, the connecting with other parents that felt particularly impacting. I attended a parent preconference session. About 30 – 40 parents from countries ranging between Mauritania in North-West Africa to various states of the USA, came together to share stories that included the very first moments of hearing about their child’s diagnosis to “wow” moments that saw everyone’s eyes light up with hope. We have all experienced different things, have been on this journey for different amounts of time, and endured many challenges that were unique to particular individuals. The differences between us may have been varied, but the overwhelming feeling was that of unity. Unity as parents of children with hearing loss, unity as parents with dreams for their kids and a unity as parents who have all heard the same controversies, grappled with similar decisions and survived with stories of hope. The impact of parent-led support was evident, not only through hearing the information relayed by several active parent leaders from across the globe, but simply through participating in a parent-only session that morning. I had to smile when realizing that there is an untold truth of universal speech therapy and audiology bribery –an after therapy ice-cream!
Lunch times and evenings provided wonderful opportunities to connect with individuals. There was much laughter, as life experiences were shared, and I so cherished every conversation that I was privileged to be part of. A conversation with a new friend has really given me a different angle at which I view my unique and precious family. She expressed how wonderful it is that we are a “deaf family with hearing members.” Our girls out number Graeme and I, which makes us a predominantly deaf family. Just seeing that differently left me with a new sense of belonging to “Holland”.
Another unique experience left me feeling very proud. Up until now, when I am introduced to people as being a parent of the deaf, the assumption is always that I have only one deaf child. That acknowledgement alone, usually sees eyes filled with pity at my “loss”. When I explain that actually all three of my daughters are deaf, the conversation always grows heavier as expressions of sorrow and concern are usually the norm. In the taxi that shuttled us to our hotel, I met a fellow parent from New Zealand. Deafness is part of her family, and the generational perspective has given her the lens of it being anything but a disability. Once introducing myself as the mother of three deaf daughters, her eyes lit up as she acknowledged that as being something wonderful. Now that was a first! It’s amazing how people can look at exactly the same thing and see something completely different. I liked her lens!
Something that I’ll remember forever was a keynote speech presented by a deaf lecturer from Gallaudet University. She is a psychologist and has a PHD and particular interest in Autism. Her lecture was presented in ASL (American Sign Language) and voiced over by an interpreter in English. She was captivating! If there was ever any secret concern still left deep inside of me that my girls were disabled in any way, this woman washed that clean. The confidence and fluency with which she presented her lecture surpassed most of the wonderful lectures that I have ever heard hearing people present. I have since emailed her to thank her for the opportunity to witness such excellence, and she replied with the encouragement to simply set my expectations of my girls high and to lavish them with love. This was just one of several interactions that I had with deaf adults, and left Austria with a heightened appreciation for the role that deaf adults play in the lives of families with deaf children.
I met the most respected professionals in the field of deafness from around the world. Coming from a medical background, and having experienced the often less-than-kind reality of the medical hierarchy, I was struck by the sincere kindness of these people, their interest in me and my girls and their love for families of the deaf. This was a very humbling and unexpected experience.
Through all my conversations, introductions, and moments to muse over Austrian cuisine, my three precious girls were continuously on my mind. As I described each one of them and recalled funny stories and tougher moments, I could see their little wrinkled up noses as they smiled, hear the cute way that they say certain things and picture their precious hands as they flit about expressing what’s inside of them. I certainly have been blessed beyond measure through the gift of my three deaf daughters.
I’ve come back excited to connect with families, one at a time, and explore how family – led support can take root in my diverse and beautiful country.