SNN Shares: Transitioning to Adulthood
26 October 2019, Central
What do you think about when you see the word “adulthood”? Turning 18? Leaving school? Independent living? For young people with disabilities this may not be the complete picture.
On 26 October, parents and professionals gathered together for SNN Shares: Transitioning to Adulthood. Our panel of speakers spoke in this half-day workshop about how parents can approach their children’s transition into adulthood. Like our previous SNN Shares events, most of the speakers are parents of children with special needs and disabilities. We also hosted representatives from Hong Kong organisations providing educational programmes for young adults with disabilities, and supporting employment of people with disabilities.
Topics discussed included the legal framework in Hong Kong for supporting young adults with disabilities, and how countries around the world should embrace the spirit of the Convention on the Rights of Persons with Disabilities (CRPD), as well as practical matters such as estate planning, and post-school educational and vocational options.
We live in a society where parents may feel they are constantly being told the correct way of parenting. If a child has a disability, parents are supposed to help “fix the problem” (the child), so the child can better fit into society. Seldom do parents give themselves the space to ask why this should be so. Our speakers introduced the concept of a person-centred approach to disability and guided us to put our children at the centre of discussions and plans for their future. Whatever a person’s disability, we should encourage communities to recognise that disabled people are valued members of society. Let’s ask for reasonable adjustments to be made to accommodate people who are differently abled and equally deserving of fair treatment.
My main takeaway from the talk is that while, on the one hand, we as parents should think of our children as individual human beings with their own right to education, employment, access to healthcare and legal protection, and the right to participate effectively in the society, on the other hand, we also need to use our creativity and flexibility to advocate for our children and provide them with the best support we can. Parents inevitably play an important role in a disabled child’s journey into adulthood. But, as we plan ahead, we need to accept the reality that we may pass away before our children and, hence, we should think about the future financial arrangements for our children’s care.
That being said, I think we can all acknowledge that it takes more than just the family unit to bring about a smooth transition. Networks providing support, such as SNNHK, can be valuable assets at such a time. We hope our participants all enjoyed the event and left feeling informed and empowered.
We look forward to seeing you at our Christmas social on Thursday, 12 December 2019.
Heep Hong Society - SNNHK Workshop:
Introducing PACT to Families of Children with Communication Challenges and its Application at Home by Neo Ngan (Educational Psychologist)
1 June 2019, Kwun Tong
SNNHK was pleased to work with Heep Hong Society, a major non-governmental organization in Hong Kong serving children with disabilities and their families, to offer a workshop to introduce the Paediatric Autism Communication Therapy (PACT) to parents and caregivers. The two-part workshop aimed to provide parents and caregivers with strategies and tools to improve children’s communication and social skills. The workshop was delivered by Neo Ngan, an educational psychologist of Heep Hong. Neo has worked extensively with children who have various communication challenges. He has been passionate about bringing PACT to families as he has seen good results. Most children spend a large part of their awake time with parents and caregivers, hence parents and caregivers are the best agents to bring about changes in children. At the same time, it is of vital importance that the parents and caregivers are attuned to the child’s needs while spending time together. These are what we had in mind when we organize the event.
At the workshop, parents and caregivers were given the opportunity to learn about the key elements of this evidence-based therapy. There were also significant interaction and role playing to allow parents and caregivers to experience the therapy in action. While autism, autistic spectrum disorder and communication challenges are highly varied, the workshop covered strategies to work with both pre-verbal children and children with some language skills. We hope participants found the workshop helpful and will be able to apply the skills at home.
SNN Shares: Balancing Academic Progress and School Options with Trisha Tran
21 May 2019, Skadden, Central
Schooling of SEN children is a perennial topic on our social media platforms. The SNNHK Committee was proud to host the second SNN Shares event of the year to cater to this very topic. Trisha Tran, an SNNHK parent, delivered a very informative presentation and shared her valuable experience during the event.
The presentation gave the audience an idea of the landscape of schools providing SEN support in Hong Kong. Trisha explained the disparity in certain private schools’ apparently welcoming attitude to SEN children, while practically the schools may not be able to provide an adequate level of support. As a comparison, public schools are well funded by the government and the level of support may actually be better. Therefore, it is very important for parents and caregivers to visit schools, and talk to teachers and staff, as well as parents of children already at the schools, while they consider their own situation and their child’s specific education needs. In doing so, a more comprehensive view can be formed about certain schools, and ultimately should allow parents and caregivers to be better informed when make schooling decisions for their child.
Trisha shared her journey with her own daughter and SNNHK Volunteer Amy Fernando was also invited to talk about her experience with her son’s school. In doing so, Trisha highlighted the importance of building close relationships with teachers and therapists at the child’s school and advocating for the child. While most schools will do their best to support children with SEN, it is up to parents and caregivers to work with the school to come up with an individualized plan that is tailored to serve the specific needs of the child.
During the question and answer session, both school-specific questions and SEN-related questions were raised. Trisha shared her perspective and examples while other participants also contributed to the conversation. Both the SNNHK Committee and Trisha were happy to see the rapport between participants, and encouraged further connection among parents through SNNHK’s network.
As the end of the school year approaches, SNNHK has two final events to offer. The first is a workshop on PACT (Pediatric Autism Communication Therapy) co-organised by SNNHK and Heep Hong Society on 1 June. The workshop will be run by Neo Chan, education psychologist of Heep Hong, and you may register here. We will also be holding an evening get-together on 12 June, before we break for summer. Hope to see you there!
SNNHK Talk: The Joys of Growing Up with Scarlett Mattoli
5 March 2019, OpenMind Space, Central
As a parent, what do you feel when you think about puberty? Does it feel like an overwhelming topic? Do you worry about how to communicate with your child? In SNNHK Talk: The Joys of Growing Up, psychologist Scarlett Mattoli provided participants with a wealth of information to equip them in supporting their children through these strange yet exciting years.
The presentation was very comprehensive, covering areas such as neurobiology, bodily changes, normalizing the topic of sex, basic needs (eat, drink, sleep and exercise!) of growing children. It was also explained to participants how the period may be extra challenging for children with ADHD as well as other neurodivergent children. Using everyday examples, participants were given an opportunity to visualize how certain physiological changes in children could have contributed to behavior that might prove difficult for people around them.
Scarlett also shared with participants a wide variety of online resources and books which parents and caregivers may employ to discuss puberty with children. For children with learning difficulties, picture books can be useful. Parents and caregivers may even construct social stories with pictures and symbols together with the child to reinforce certain ideas and boundaries. Difficult issues such as sexual stimulation in public can be very challenging for parents to tackle. Communication tools (stories and books) could be engaged to help children understand that certain things should be done only in private. Children may be facing new and overwhelming emotions and sensations as their bodies change and parents may be able to help with feelings of frustration or lack of control by engaging with them in a safe space.
During the question and answer session, participants described scenarios and Scarlett shared her insights. There was constructive exchange and participants found the Q&A session helpful and enjoyable. It was like the final piece of the puzzle where information discussed during the presentation can be used to explain real life cases. Additional tips in dealing with challenging situations were also shared.
It was great to have a talk that touches on so many aspects of our children’s lives by a professional. SNNHK have been collecting feedback from its members about events that could be of interest and schooling came up a lot. Save the date (21 May 2019) for our next SNN Shares event: A Perspective on School Options and Perspective Progress for Children with SEN in Hong Kong. SNNHK parent Trisha Tran will provide an overview of schooling options. We expect lively and keen discussion to follow the presentation. Hope to see you there!
SNN Shares: Advocate for your Child with Special Needs
Making sense of HK Public Services
17 January 2019, Bird & Bird
We are pleased to say that SNNHK’s first “homegrown” event was a success! The SNNHK volunteers welcomed both familiar members and new faces at the event. Sarah Tam, mother of a young disabled child and SNNHK Volunteer, presented on the rights and entitlements of children with special needs and disabilities in Hong Kong. There was active discussion and sharing during the open discussion session. The SNNHK volunteers were glad that communication was multilateral – not only was factual information disseminated by the organizer, but parents and caregivers who had gone through the process themselves also selflessly shared their valuable experience with other participants. .
It is natural for most of us, who are living in a relatively privileged part of the world, to assume doctors/professionals/social workers will be able to help us. Indeed, the Hong Kong government has been doing a decent job in providing support to families of children with special needs and disabilities, only that the system may be too complex (not complicated) to navigate and the professionals in the system are not bound to be proactively bringing the services to eligible families. From our vantage point, the gap is not huge and can be easily bridged by people whose interests are most aligned – parents and caregivers of children with special needs and disabilities. This is what shapes our objects and our work: supporting parents and caregivers in bridging the gap.
I recently came across the term “lived expertise” used by patient advocates on Twitter. It came much later than when our first SNN Shares event was conceptualized but in hind sight, lived expertise is indeed what we have been trying to bring out to the fore front. One of our goals at SNNHK is to empower parents and caregivers. By highlighting the importance of the parents’ and caregivers’ lived experience and encouraging sharing among them, lived experience transforms into lived expertise. We hope to be organizing events that are similar in spirits on other topics that may be interesting to you.
SNNHK Xmas Party
6 December 2018, The Globe
What a jovial evening we had! It’s that time of year where we gather together to celebrate. Last night, we had the most wonderful group of red at the Globe for the SNNHK Christmas event! We were able to share our ideas on the widest range of topics. We left the event feeling a little happier, a little more loved, so we are in a better place to care for our children.
To make the event go from good to better, we had the formalization of #SNNHK to celebrate, too! SNNHK is now a registered society in Hong Kong. The Executive Committee is hoping to bring even more to the community with the organisation’s new identity. We believe our formal structure will enable more changes and impact for the betterment of the special needs and disability community in Hong Kong. That brings us to SNNHK’s first “homemade” event: SNN SHARES: Advocate for your Child with Special Needs. Save the date and register here.
It’s one of the core beliefs of SNNHK that change and impact begin at the family. We endeavor to equip and empower the family to make things happen for the children. Grappling with special needs and disabilities of a loved one is never an easy task. We believe sharing our individual experience with advocating for our children will bring about changes not only for the child, but for the family as a whole. We are so happy and excited that we’ve already have signups! We hope to see you at the January event. It’s an occasion for us to benefit ourselves and pay it forward at the same time.
Last but not least, the SNNHK Executive Committee wishes you and your family Merry Christmas and a fruitful new year!