By Cruzanne Macalligan
Today, Special Needs Network Hong Kong (SNNHK) is a support network connecting nearly 700 families of children with special needs and disabilities, but once upon a time, it was just a group of three mums of children with additional needs, meeting up over a glass of wine to vent, voice their fears and worries, and problem-solve one another’s challenges. That spirit of friendship and mutual support remains at the heart of SNNHK today, but it has been an incredible journey.
Founders and friends
Friends Kim Anderson, Nicky Irvine and Sandra Feran could never have imagined what their loving trio would become but, as Nicky remembers, “it was company, friendship and connection that brought us together”. While the issues shared were diverse and unique to each of their children, they realised their concerns, fears and experiences were alike, and that meeting others who understood was powerful. The meetups expanded through word-of-mouth as parents reached out to other parents and, as Kim recalls, “the group grew and grew and kept growing”. Today, the three have moved overseas and continue their journeys with their now adult children, but their legacy lives on in Hong Kong.
SNNHK Chairperson, Larissa Downes, first met this unique group of parents within a year or so of the birth of her son Sam (who is now 18), “SNNHK’s mission today is the same as when the group began to formalise over 10 years ago. We aim to Connect, Support, Empower and Share: bringing together our shared experience to support one another as we navigate the challenges and joys of parenting children with special needs and disabilities.” Learning your child has additional needs, whether prior to birth, after birth or later as their development takes a different path to peers, can come with a huge range of emotions and worries. As Nicky says: “I felt alone, overwhelmed and not sure how to navigate this new world of parenting a child with challenges.” It’s a feeling that so many identify with, and one that when you meet other “Mother Warriors”, as Sandra calls her fellow parents, that you are not alone in feeling.
For the SNNHK founders and early network, the desire to share that support and care was so important. Another Mother Warrior who helped shape SNNHK was Emily Tein Johnson, who met Kim in October 2012. In the days before WhatsApp and more connected social media were ubiquitous, they brought together two separate groups of parents into a more organised network, with a Google Group and private Facebook group offering private forums and communication channels for parents to share without judgement. Emily remembers the time fondly, “I was sitting with Kim at Cova café brainstorming and writing out SNNHK’s vision and mission, thinking how we would organise parent talks, connect parents, and empower each other through sharing resources and information. Having a child with delays is so overwhelming in the early days, months and years, we were really motivated to form a caring, supportive and empowered group of parents, caregivers and families who could bravely advocate for their children.”
Founding families: Kim and family, Nicky with her son Thomas, and Sandra with her sons Leo and Cole.
All for one and one for all
While the group was founded to empower parents to advocate for their own children, it has been inspiring to see how parents have come to the support of each other, and the disability community. Founder Kim often reflects on this. “I love the resilience, tenacity and creativity of so many of the parents that I met over the years, especially when faced with the very emotional and psychological challenges of parenting a special needs child.” We all learn from and grow alongside those around us, and that camaraderie persists today. SNNHK came into being precisely because it really does take a village to raise a child, let alone a child who is facing unique difficulties.
As Emily says, “The mental health impact of raising a complex special needs child cannot be overlooked, and special needs parents, no matter where we live, have a unique bond. We are always willing to help each other because we know how hard the journey is, and we know we cannot do it alone.”
Opening doors
In October 2015, SNNHK held its first volunteer meeting, with one of the main goals being to bring information and resources directly to parents. The first event (about postural care) was held in December that year, and was quickly followed by talks on nutrition and childhood neurological development. Since then, SNNHK events have covered a huge variety of topics. At the same time, parents in the non-Chinese-speaking special needs community, led by Trisha Tran, were beginning to speak up and advocate for equal access to education at the Equal Opportunities Commission and Legco. In 2018, SNNHK was registered as a society and launched its website www.snnhk.org. “I think formalising SNNHK really gave the group a louder voice in the Hong Kong community,” says Emily.
While SNNHK has worked to improve knowledge of how to access community resources, have the resources themselves improved? Kim thinks so, although slowly: “Support for special needs has improved over the years since my daughter’s birth. But it has been a gradual process, and took a lot of advocating, focus and lobbying by individuals and groups of parents.” Nicky knows this is because of the energy of the families involved: “As brave parents shared their stories, the awareness grew; more programmes and opportunities became available for our loved ones who were challenged, differently abled and unique.”
The future in focus
All four of SNNHK’s founders agree there is more availability, choice and variety of services available now – but there’s still a way to go. In Hong Kong, where new parents may not all have the support of an extended family network, and where disabilities are not always openly discussed, the paths to finding the resources you need can be tough. While services are available, they are not always well signposted and you often rely on the experience of others to guide you.
“One of the challenges of Hong Kong is that information related to services is scattered and disjointed,” says Emily, “SNNHK fills a gap, by centralising information and connecting people who have similar challenges.” Today, SNNHK’s website guides parents to a range of resources, including seminars and handouts like the Public Service Navigator, which are available to members to help identify local service provision. Event speakers seek to inform and educate on a broad range of topics, and to give parents the tools to assist with their children’s care and development. The group’s private Facebook group is filled with conversations around services and education, offered up with the same generosity and honesty as the discussions held between members in person.
Caring for the carers
When asked for a few words of wisdom from our founders, finding time for self-care came top of the list. “Don’t be afraid to accept help. Find an activity that gives you your own ‘headspace.’ Connect and talk to your friends as much as your own situation allows,” says Kim. Sandra offered some practical advice: “1. Get some sleep: Life always looks and feels better when we are not sleep deprived. 2. Ask for help: People are waiting to lend a hand and it helps us all to have a sense of purpose. 3. Trust yourself: Use your intuition. Mine never let me down when decisions needed to be made. 4. Choose your battles. Not everything is important. This helps conserve your energy for the big moments.”
"Raising our special children is a marathon not a sprint,” says Emily. “Don’t forget about self-care and taking care of you. And, if you have other children, don’t forget about them.” In the early days of her son’s diagnosis when everything felt overwhelming, a close friend of Emily’s shared one of her biggest regrets, which was that she focused so much on her special child that her other children felt neglected. Partners, too, may not be high on the list of priorities for a parent-carer, and both Kim and Emily remind us, “Don’t forget about your spouse. You and your spouse are a team – you may respond to your child’s delays differently – but you are a team."
While parenting a child or children with special needs or disabilities comes with its challenges, and the road ahead can look rocky, Nicky has some simple advice, “Remember to take time to do what brings you joy, take time to consciously breathe in and out, and accept, respect and love each moment you have with your loved ones.”
Today and tomorrow
Twenty years on from those first chats over a glass of wine, the network that Kim, Nicky and Sandra founded, and which Emily, Trisha, and many other dedicated parents and exceptionally committed volunteers have shaped over the years, has delivered years of regular activities, talks, seminars, wellbeing events, coffee mornings, socials, plus dedicated volunteer committee meetings – alongside countless hours of support and friendship.
The group has delivered on its original goals of providing a non-judgmental and open-hearted “listening ear”. The space to share, listen, understand and support is so valuable, and as Emily says, “I would never have made it through the early years without the support of other special needs parents.”
“SNNHK is in very capable hands,” says Kim, “It makes me very proud to know that the group continues to support so many families.”
20 years young, the SNNHK community is dynamic and progressive, spurred on by its amazing families. As the network continues to grow and strengthen, we look forward to opening new chapters and contributing to the positive development of Hong Kong’s society, as it becomes more welcoming, accommodating and inspired by those with special needs and disabilities.
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