"Special Needs Kids Deserve Friendship, Love And Opportunities."

A few weeks before Jake’s birth, I felt what seemed like extremely strong contractions. The doctor reassured me that everything was fine but my gut feeling told me that something was amiss. We induced labour at 42 weeks, where we discovered Jake was in a breech position so I underwent an emergency C-section.

His APGAR (appearance, pulse, grimace, activity and respiration) scores were normal. But he had trouble latching and sucking, and could not keep the milk down and settle to sleep. When he missed all his milestones in his fourth month, he had to go through a series of tests, which came back inconclusive.

Jake was unofficially diagnosed with global developmental delay and epilepsy, and was suspected to have cerebral palsy. He also struggled to feed, sleep, move, and pass motion, and experienced nearly 1,000 seizures each day. I learnt that my child would probably never be able to wallk, talk or live a long life.

But I didn’t lose hope. Refusing to accept the prognosis, I searched for a solution. Over the next 12 years, we travelled across North America, South America, Europe and Asia and embarked on myraid intensive therapies, including the Glenn Doman Method (a holistic drug-free method to aid in brain development). This journey made me realise that Jake’s mission and purpose were to ensure other kids in Asia had the same opportunity to receive such treatments closer to home.

As we searched for a solution and experimented with various therapies the world over, I also studied them. I tried to get hospitals in Singapore to provide these therapies. When they rejected my proposals, I decided I’d be the one to do so. It would give other special needs children an opportunity to access these therapies.

So in 2018, I set up Wings Therapy and Learning Center to offer programmes for children with conditions ranging from cerebral palsy and undiagnosed developmental delays to Down Syndrome. It is Singapore’s first and only therapy centre to operate under the Intensive Model of Therapy (IMOT) approach developed in Poland during the 1940s to treat neurological disorders. My team and I have worked with more than 6,000 kids with special needs from across Southeast Asia.

Launching Wings was not an easy decision, especially since I had to pay for Jake’s therapy expenses. So I sold our home and belongings. Since I stayed home due to my son’s condition, my social circle drastically shrank, which made me feel increasingly isolated. Thankfully my immediate family were always by my side; my parents stepped in to care for my three children so I could continue working. I could have never come this far without them!

It was only in 2019, when Jake was 13, that a new series of genetic tests revealed he had NACC1. It is a rare genetic mutation that affects only 50 children across the world. Also, it is not inherited.

Nothing much is known about NACC1, except that it is characterised by congenital cataracts, epilepsy, involuntary movements, and periods of hyperactivity followed by hypoactivity. The condition also affects a child’s ability to eat, speak and move, but his cognition and intelligence are above average. The periods of hyperactivity are marked with intense involuntary movements; these can last for about three days during which he does not sleep.

There was one instance he vomited so severely, it led to dehydration. His heartbeat started to slow and we could see him fading away. We rushed him to the hospital just in time. Such occurences make it difficult for children with NACC1 to attend school or seek therapy, and tremendously affect their quality of life.

Jake is 18 now, and like all teenagers, loves to have fun, trendy clothes, music and socialising. He hates it when his younger brother Tommie borrows his clothes. And he enjoys being the centre of attention, especially with pretty girls!

Jake continues with therapy at Wings - yes, he sometimes tries to find an opportunity to skip these sessions - to achieve his milestones. He attends our Youth Programme, which helps him with neurodevelopmental therapy, occupational therapy, robotic gait training and adaptive sports.

One of his favourite activities is swimming - assisted by a special flotation device - and he can hold his breath underwater. He is homeschooled, and has a speech therapist who visits him every week. That’s not all; he also works with us as a master trainer and helps to identify therapies for youths.

Of course, now that he is older, some aspects of his condition are tougher. Transferring him around the house is harder as he is nearly 40kg. We need two people to tend to his activities of daily living, from bathing and toileting to feeding him. Bringing him out is also challenging, as toileting facilities in public places cannot accommodate changing a child of his size. I don’t want to have to place him on the floor to change him!

Jake has taught me some very important life lessons, nonetheless, the greatest being acceptance. By accepting your special child’s condition and recognising that he or she truly holds potential and purpose beyond your wildest imagination despite his or her suffering, you’ll finally be able to see the rainbow in the storm of your heartbreak.

My greatest hope for him is happiness and health. I pray that advances in medicine and therapies emerge to alleviate the symptoms of NACC1. Perhaps one day he will be able to lead as normal a life as possible.

My team and I want to help build a more inclusive society, where special children are recognised as individuals who deserve friendship, love, and opportunities. This year, we will roll out Wings Youth Clinic, a programme aimed at special needs youths between 13 and 25 years old. It will help them to stay healthy and gain independence in daily living skills while they overcome puberty and hormonal changes.

I’d be the first to point out that costs to raise a special child can be overwhelming even for a middle- to high-income family. And we want to do our part to make the going more bearable. Hence, our upcoming Wings For Good is a means-testing programme that helps to lower therapy costs for needy families.

Finally, here’s my advice for other parents of special kids:

· Always keep your hopes high, no matter what your doctor or therapist might tell you.

· Prioritise your health, keep fit and strong and eat healthy. That’s the best gift you can give your child.

· Diversify your income in the best ways, save money, and build your village.

· Identify the right people to support you in your absence. Involve them in the care of your child.

· The resources are out there if you seek them, so make sure you reach out if you need help.

· It also really helps to know other special parents in the community. There is so much resource-sharing that you may not even be able to find online! Having friends with the shared experience of having a special child can be a great emotional support too.

Judith Julia Justin is the founder and CEO of Wings Therapy and Learning Center. She is the mother of three children: Jasmine, 26, Jake, 18, and Tommie, 16. All photographs courtesy of Judith.