1) How did you come up with the idea for Wings Therapy?
WINGS was founded in 2017, inspired by my son, Jake Knight. I started my therapeutic journey with him in 2006 when he was only 8 months old and we started noticing that he was not meeting any of his developmental milestones. He was first diagnosed with Global Developmental Delay (which is an umbrella term for kids who are developmentally challenged), cerebral palsy, epilepsy and congenital cataracts which he had to get surgically removed. Finally at the age of 14, we received his actual, specific diagnosis via genetic testing. He was diagnosed with a rare genetic mutation called NACC1. This genetic mutation was recently discovered in 2019 and is not inheritable from parents. There are approximately 30 kids worldwide diagnosed with this rare disease.
Jake had been attending therapy services in Singapore since 2006, which were good but they were more traditional services and I was determined to find a solution that focused more on progress and goal-setting rather than maintenance services.
I decided to start researching alternative therapies that could potentially change and improve Jake’s life. We travelled across 4 different continents over the last 12 years: Philadelphia, California, Poland, China and Chile to seek out methods that were different and provide hope for special parents around the world. It is then that I discovered a whole new world of new, innovative and amazing therapies such as the Glenn Doman program, The Intensive Model of Therapy (IMOT), Neurosuit™ Therapy, SpiderCage Therapy and Universal Exercise Unit (UEU) as well as Cuevas Medek Exercises® (CME).
For the first time after years of searching, my son started to show progress and I felt a glimmer of hope.
However, I was very aware of the plight of other parents with special children who did not have access to these services which are niche with practitioners being few and far between.
As a result, I made the decision to invest in an education in physiotherapy and certify myself in these therapies in order to launch WINGS. I did this while managing a multinational branding agency and raising my 3 kids.
2) What are the main challenges you face with managing Wings Therapy?
The main challenge I face as the founder of WINGS Therapy is that there is a lack of funding from the government and insurance policies for special needs children who need support for their broad variety of unique needs.
We understand this plight and try to work as flexibly and closely with each family on budget, time and convenience. In certain cases, we offer pro-bono sessions and training for care-givers so that they can support their kids at home. We also encourage parents to turn to crowdfunding with organisations such as GiveAsia.
We have recently partnered with Rare Disorders Society of Singapore (RDSS) through the help of RDSS sponsorships. We are so excited to work with all the kids coming in through RDSS and for more opportunities to partner with organizations to reach as many parents as we possibly can and help their special little ones in their journey towards independence.
Hopefully in time to come, special parents will have more avenues of financial support in order to provide their children with the best resources to help them explore and achieve their maximum potential so that they may live the lives they deserve.
3) How has having a son with special needs changed your life? How have you coped with the challenges?
Having a son with special needs completely changed my life—my priorities, my relationships, and has opened me up to a whole new world that I did not even know existed; the special needs community.
When you have a special needs child, your priorities shift from your own self-centered needs to the needs of your special little one. When this happens, you start to see less of your social circle and enter into a brand new community of kids like your child. You start understanding terms you never knew existed, and come across conditions you’ve never seen or paid attention to.
For one, I would say that I have a whole new concept of what ‘gratitude’ means. The little things that we do so mindlessly, like being able to transition from sitting to standing, holding a pen, using the toilet on our own, are things that special needs kids have to work so tirelessly to achieve. The incredible effort they make and the champion smiles they don when they finally achieve these little milestones is incredible. It has taught me so much that I should never take these things for-granted, and when I feel lazy or frustrated, I look at my son, Jake, and my patients at WINGS who work so hard every single day. They are my muses and my fuel to keep going.
Before I had Jake, I worked in Branding/Public Relations/Marketing leading a multi-national agency. However, after having my son, travelling the world and learning about the therapies that were out there miles and miles away from Singapore, I had a new dream: to bring these therapies from far and wide to make it accessible to special parents.
To be completely honest, it was the easiest decision I have ever made. Yes, it is a lot of work, but when you’re passionate, all the work is worth it. Seeing my son and so many kids like him have access to these intervention methods at their doorstep—Being able to see so many parents like myself who started out seeming at a loss and hopeless, to seeing their faces light up with hope and joy as they see their kids making progress is an experience that not many are lucky enough to see every day. I would not change anything about the life I am living now.
4) What were some of the toughest and most rewarding / meaningful moments with your son?
The toughest moments with my son was definitely in the beginning when I started to realise that he was not hitting his milestones and that something was just not right. Due to his NACC1 genetic mutation diagnosis, the toughest moments now are when he goes through what are known as ‘cycles’ of extreme mood swings and involuntary movement, as well as seizures. It’s hard to watch when his condition takes over and causes him so much pain.
However, watching him grow up, I learnt to accept his condition and I have learnt that he may be differently abled, but all that he is has made him into the incredible, wonderful person he is today. Through my son’s journey, together, we have been able to help thousands of special families. He is the inspiration and founding of WINGS. Without him, none of this would be possible. So I really have him to thank. He is an earth angel.
I am also grateful for every day that he is alive and in good health – when he has a good day and is able to socialize and interact with the community. My most meaningful and rewarding moments with him are definitely when I see him smiling. The positivity he has at every moment he can, despite his challenges, is truly humbling… He truly teaches me and reminds me every day to be grateful for every little blessing and celebrate all little wins, even if they may seem insignificant in the eyes of others.
Life tastes so much sweeter when you look at it through a lens of gratitude
5) What advice would you give to other parents whose children were also born with congenital defects?
There are so many things that a special parent goes through physically, mentally and emotionally.
If I had to give any advice, I would have to say the first step forward in your journey with having a special child is acceptance. You have to accept that your child has special conditions in order to move forward. It can be very immobilising in the beginning because it was not the kind of life you originally thought your child would have. But it is very important to move past the grieving stage to accept and love your child for the person that he or she is and not what you would rather he or she be. Your special angel is a person who feels and understands everything that happens around him or her. When you are experiencing negative affect, your child can and will feel it. It is important to show your child as much love and acceptance as possible, and to believe in your child. No matter what anyone may say, always believe in miracles for your special little one. One thing I have learnt being in this industry is that nothing is ever set in stone. Your child has greater potential than anyone could realise and time is of essence. The quicker you accept your child’s condition and start moving forward with the proper intervention your child needs, the better your child’s chances are of achieving his or her goals and pulls you closer to realising his or her greatest potential.
No one truly understands what a special parent goes through better than other special parents. Hence, I would also advise parents to connect with each other. Share your struggles, your wins, your resources, etc. It is important to take care of your psychological well being because it can be an emotional rollercoaster. Connections with people who understand what you are going through, as well as supportive family members is a huge help! So many of our kids at WINGS come with their family members. When their parents can’t bring them, their grandparents, aunties, uncles and cousins step in and help and it’s such a heartwarming sight! Seeking counselling can be a great help too, when things get too overwhelming.
Last but not least, it is important to celebrate all your child’s little wins. As I mentioned previously, changing my perspective in life to one centered on gratitude has brought me and my child to heights we never could have imagined before we set foot on this journey. Your child needs to know that you see his or her progress and that you are with them every step of the way. They need to know you support them and appreciate their effort. It is a partnership that will keep you two going and with positive thinking, encouragement and goal-setting matched with the right interventions, you can go further than you ever thought you could.
Additionally, I would recommend parents with children whose diagnoses are vague, unspecified or undiagnosed to try genetic testing. There are so many rare conditions that go undiagnosed as the issue lies within the genes of a child—from random mutations to inheritable conditions. With a specific diagnosis, your child’s interventional needs become more specific and as a result, you are able to take proper action to truly help your child. The more children diagnosed with a certain condition there are, the closer researchers come to being able to pinpoint the cause and effect of that condition and work towards better solutions for that condition.
6) How do you want strangers who meet your son to treat him or interact with him? Would you say this is a good guide for anyone who may meet someone with disabilities?
People with special needs are no different from anyone. A lot of them may be non-verbal and as a result express themselves differently, but the truth is, they understand everything you tell them in the same way you or I would be able to. Everything you say and the kind of feelings you emit when you are around them—they understand it all. So I think a rule of thumb that anyone who may meet someone who is differently-abled should follow is: treat them the way you would treat anyone else. Be kind and compassionate, be yourself and just act normal!
7) What advice would you give to any person who sees a child or a family with persons with disabilities? What should they do or say or should they just ignore like how they may treat any other stranger?
Something I always remind guests at my home, friends or relatives meeting my son is to ACKNOWLEDGE him and say hi to him the way they would when seeing his siblings or any other child. Just as it is rude to ignore an ordinarily-abled child, it is rude to ignore a special child. I think every special parent would appreciate you acknowledging their child and treating them like the human that they are.
With regards to strangers, if someone is in need of assistance or obviously in distress or struggling and you have the ability to help, then by all means please do. If they wave at you or smile at you, it would surely make their day by reciprocating.
However, if you are a stranger, you do not need to go out of your way to treat a person with disabilities differently by greeting them when you are not greeting any other stranger around—because that is still treating them differently and singling them out of a crowd.
8) If you could do/change anything in Singapore or about your life, what would it be?
If there was anything I could change in Singapore, it would be for there to be a government scheme that provides funding to parents of special children who need rehabilitative services beyond what is available in public hospitals.
I also think it is important for us as a community to move towards greater inclusion and integration of the special needs community in the mainstream community, such as in mainstream schools so that special kids can have equal opportunities and kids in the mainstream can get exposure and learn how to be friends with those who have different abilities, as well as in public toilets to cater to special kids and adults who cannot sit on their own, with big enough changing tables and proper sanitisation.
It’s incredibly sad the number of stories I have heard from parents who have had to change their older children on the floor or even go home halfway through an outing simply because the handicapped toilets and changing tables only cater to those who are elderly, wheelchair bound or to babies small and light enough to fit on them. We have implemented our own inclusive toilets at WINGS with an adult sized changing table that allows for special needs peoples of all sizes to use them, and big enough cubicles for wheelchairs, but we are hoping to see more places beyond our own center to start implementing such changes.
9) What does thriving mean to you?
To me, thriving is simply about keeping the ball rolling forward. In other words, being the best version of yourself that you can be within your own means, and always working to improve. Even if it’s in little increments that no one but you can see, progress is progress and I believe that all progress should be celebrated. Progress, even in baby steps, means that you are moving forward. Even if you fail along the way, as long as you get back up and keep putting in the work in hopes of a better tomorrow, you are thriving.