“My 9-year-old daughter drools, so classmates stay away”

Though her daughter has a very rare disorder, Sally Kwek believes she can achieve great things, just like other kids…

Sally

My daughter, Jarene, is an active 9-year-old girl, who’s always game for adventure, novel experiences and fun games. She’s witty, has a great sense of humour, and loves music and dance.

She has an extremely good memory for routes, songs, stories and patterns, and loves word games. She’s fond of magic shows and live performances, and is also a hopeless romantic.

Jarene has problems with swallowing, speech and motor coordination. Even though she displayed all these challenging medical symptoms right from birth, it was very difficult getting a specific diagnosis. We looked everywhere online for an answer, a name for her condition and a cure, but it was difficult to pinpoint what exactly it was.

When she was 6, Jarene was diagnosed with both Moebius syndrome and Worster Drought syndrome ― both are rare neurological conditions. Moebius syndrome affects the muscles that control facial expression. Worster Drought syndrome is a type of cerebral palsy that affects the muscles around the mouth and throat.

Jarene has huge challenges in her social life as her speech lacks clarity, in addition to her inability to swallow and eat properly. Also, her weak facial muscles prevent adequate facial expressions, and the limited eye movements result in inconsistent eye contact.

Because she drools, it means wet shirts ― her peers shy away, since they associate filth and untidiness with her. It takes extra-special people to see her beyond her physical presentation and awkwardness.

It takes extra-special people to see her beyond her physical presentation and awkwardness.

Before I could truly start adding value to caring for my daughter, I first had to deal with my own emotional difficulties. Very early on, my husband and I decided to do our very best for her, no matter what’s required. In the first four years of her life, we intensively helped her with physical movements to help build her strength, motor skills and stamina, which allowed Jarene’s physical abilities to emerge.

We brought her for monthly physical therapy (PT) sessions at KKH, and read up widely on therapy interventions. We used the neighbourhood playground thrice a day as a PT gym for my girl. We taught her one skill at a time including core strength, standing and walking. We even taught her how to fall safely.

When Jarene was 3, we found two private speech therapists who helped her greatly. Her facial expressions improved after she learn oral motor-placement skills. She started also being able to blow bubbles, candles, and started babbling and verbalising words.

My husband and I attended basic sign language classes, so that we could teach her sign language to complement her communication. I stimulated her cognitively through music, teaching rhythm, memory, vocab, while encouraging interaction, speech and thinking skills. I also taught her how to read and write. A lot was done at home.

Sally2

At 33 months, Jarene started attending the Early Intervention Programme for Infants and Young Children (EIPIC) at Rainbow Centre Singapore. She attended 3-hour classes thrice a week at the Margaret Drive special school for 1½ years before joining a private EIPIC centre could offer her a daily intensive school readiness programme.

During this time, Jarene also attended classes at a mainstream kindergarten class twice a week. Later, I shadowed her at a mainstream primary school for six months. I had to be around in order to facilitate communication when needed, as well as to tube feed her, since she gets all her hydration and nutrition through a feeding tube.

Jarene’s biggest challenge, especially when she was younger, has always been to get her teachers and peers to understand her. Because she lacks expressive speech and obvious non-verbal facial cues, she was often grossly underestimated. Yet during those times, there were uplifting experiences when the rare one or two peers were able to see beyond Jarene’s disability and accept her as she is.

We also had to grapple with bullying, unpleasant remarks at playgrounds, play gyms, and in classes. But we have learnt to shake these off and just move on. It is also interesting to see how people would think less of her at first and how they’d be so surprised on seeing that she can do things really well. For example, she can play the piano, write and do maths.

I am quite hard on her in the sense that I don’t give her excuses.

The biggest challenge is convincing educators, doctors and peers that Jarene has much more in there than they think. As she grows and acquires more skills, these people slowly start to believe more in her because her abilities have also become more visible and quantifiable.

I coach Jarene a lot emotionally. Because she can understand many things, I share with her stories of resilience. I help her cultivate a can-do spirit. I encourage her to be adventurous and stubborn in the face of adversity. I am quite hard on her in the sense that I don’t give her excuses. I’ve brought her up to know that it’s not fruitful to give excuses.

It is a fine balance ensuring she’s sufficiently stimulated, yet not be overtly frustrated. But setting stretched goals are important for my child ― it’s important for her to see that stretched goals are possible to achieve.

I’ll never give up on my child as I’ve known, even at a very early stage, that she is capable of much more. Friendships are still difficult, but more people can understand her speech now. Jarene, who now attends a Functional Academics Programme at Cerebral Palsy Alliance Singapore, is doing well. She has a best female friend in school and she starts more spontaneous conversations with her classmates without need me to facilitate.

Having Jarene has taught me to tolerate pain better. I’ve also learnt to create blue oceans even when nobody believes in me, and what faith is even when I can’t see the road I’m moving towards. It has taught me how to cope when I don’t have the answers all the time. Our lifestyle has definitely changed. Everything our family does is centred around Jarene’s needs and schedule.

I founded Special Seeds, a community advocacy platform and online magazine that brings together caregivers of special-needs children. We share experiences, support each other, engage in debate, and are seen and heard by the public.

We want this to be a platform for the different disability groups to unite, and for those outside the special needs community to engage with us, as members of the public, allied health personnel, policy makers, business owners or service providers. We also want to share our caregiving know-how with parents who have just started on their caregiving journey.

It has taught me how to cope when I don’t have the answers all the time.

The biggest problem that families with special needs face is to be recognised as people who just want to belong and attain their basic rights without unnecessary obstacles or harassment. We want to be treated as normal as possible, without overt condescension, without condemnation, without overt pity.

In education, I hope to see more flexible pathways for special needs families. Whether one chooses the mainstream or a special education path, she should be supported in doing her best, even if she has to be specially accommodated. There should be more options to attain skills, and even the option of completing mainstream education.

I hope to see better acceptance in public places, toilets for use by the disabled, better accessibility in public places, and representation and inclusion of the special-needs community in parliament.

I hope to see greater diversity of participation at major events ― for instance, in the sports arena, that able-bodied athletes and para-athletes are given equal honour and recognition. I hope to see greater opportunities in employment and in higher education.

Most of all, I hope that when a family who has a loved one with special needs leaves their home, they are not made to feel that much more different from the average family down the road.

Sally Kwek, 40, lives in Singapore with her husband, Joe, 43, and daughter Jarene, 9.

Graphic: iStock

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