The Journey of Soraya: When Down Syndrome Inspires Lives and Perspectives

Soraya is a spunky little girl. And a busy one at that. At three and a half years old, her timetable is packed. Every Monday to Thursday at 9:00 sharp, she attends classes at Kiwanis Down Syndrome Foundation (KDSF) in Petaling Jaya to learn speech, motor and cognitive skill development through play. At the same time, she receives physical therapy and exercises to improve her muscle tone. By noon, she zips off to a daycare centre where she is looked after for the rest of the day and by the evening, she has all her day’s lessons repeated at home with her family. On Saturdays, she joins her Kinderkaizen playgroup where she gets to socialize with adults and regular children of her age to experience all sorts of creative and physical adventures. Clearly, life is filled to the brim for Soraya.

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No obstacles in Soraya’s path.
No obstacles in Soraya’s path.

For her mother, Afida, who works as a legal counsel in a company, the focus and energy-input on the little girl’s development is single minded. Says Afida: “The reason I send Soraya for all these programmes and playgroups is to help her achieve all her developmental milestones and self-help skills so that she can grow up confident and independent and participate as a functioning member of society.”

Afida adds that luckily for her, she has flexible working hours and arrangements that allow her to juggle her time fetching and sending Soraya to all her various programmes while managing her home and office needs.

She even put up an Instagram page for Soraya called @soraya.myjourney Instagram profile to “un-stereotype” the condition and to let everyone know that having Down Syndrome is not the end of the road but the start of an enriching, fulfilling journey.

Soraya's own Instagram page.
Soraya’s own Instagram page. Click on the picture to get there.
Soraya Adlyn is the youngest of Afida’s four children with the eldest already 15 years old. Afida recalls she was busy nursing the second youngest child at the time when she conceived Soraya and wasn’t even aware she was pregnant until much later.

“I was only informed of Soraya’s condition after she was born,” she says, recollecting that the pediatrician at Tropical Medical Centre where she delivered only suspected that the baby had Down Syndrome based on his observation that she had almond-shaped eyes, a single palmar crease, the wide gap between the big toe and the second toe, and so on. Soraya was only confirmed to have Down Syndrome after a chromosome test.

What Is Down Syndrome?

Down Syndrome is a chromosomal condition characterised by the presence of an extra copy of genetic material on the 21st chromosome. The disorder is named after John Langdon Down, the British physician who first described the syndrome in 1866.

The Resource Room at KDSF is stacked to the brim with colourful exercise and learning tools and equipment which parents may borrow to teach their children at home.
The Resource Room or Library at KDSF is stacked to the brim with colourful exercise and learning tools and equipment which parents may borrow to teach their children at home.

Down Syndrome is often associated with some impairment of cognitive ability and physical growth, and a particular set of physical characteristics. However, many people are not aware that there are also associated severe health concerns and these include poor muscle tone, a higher risk for congenital heart defects, gastroesophageal reflux disease, recurrent ear infections, obstructive sleep apnea, and thyroid dysfunctions.

Soraya’s Diagnosis

True to the issues linked with the syndrome, Soraya had Atrioventricular Septal Defect (AVSD) ─ a heart condition affecting the valves between the upper and lower chambers and the walls between the chambers. Soon after birth, she was referred to Institut Jantung Negara (IJN) where she had her open heart surgery when she was just four months old.

Soraya has since recovered and is an active, bubbly child today. However, she still has to return to the hospital for regular checkups for her other issues.

“The health screenings she has to do on an annual basis are on her thyroid function, sight, hearing and her congenital heart defects, but other than that, Soraya behaves no different from other regular children,” says Afida.

Soraya interacting with her teacher at the Toddler Class in KDSF.
Soraya interacting with her teacher at the Toddler Class in KDSF.

Early Fears

The mother recalls that when Soraya was first diagnosed, she experienced an emotional pendulum but the biggest downswing was fear, which she later identified as a fear of the unknown. “I didn’t know anything about Down Syndrome at the time, I had three typical children before this and being handed this new development out of the blue, was naturally very scary for me.”

But rather than staying afraid, Afida went all out to confront her fears.  “I immediately did research, looked for all the resources that we could get and even bought books from Amazon that I read up during my confinement period,” she laughs, remembering her determination to not get defeated, a resolve she has remained stoic to till today.

Also Read:  6 Secrets to Raising a Happy, Confident and Successful Child

She learnt everything there was to learn on understanding and managing Down Syndrome, and, “after that,” she says with relief in her voice, “I was more confident.”

On With The Programme

The family had great support from the hospital which contributed in part to Soraya’s progress. It was the consultant paediatrician from Tropicana Medical Centre, Dr Ling Shih Gang, who referred Soraya to KDSF. Once they were there, the family filled the necessary forms and was soon called to enroll in KDSF’s Early Intervention Programme.

Soraya began therapies as soon as she turned two months old but the programme had to be paused in between to enable the child to first heal from her open heart surgery.

When she returned at six months old, Soraya was put on KDSF’s Infant Stimulation Programme which comprises a range of exercises including water therapy and speech therapy.

Afida: “I can’t stress enough the importance of early intervention. Soraya has benefitted so much from all the programmes and playgroups she has been attending.”
Afida: “I can’t stress enough the importance of early intervention. Soraya has benefitted so much from all the programmes and playgroups she has been attending.”

KDSF has a range of programmes dedicated to the education and welfare of children with Down Syndrome up to six years old. Their physiotherapy and occupational therapy plus other related programmes such as speech therapy and special educational help are designed to enable children to learn as well as overcome their inherent physical weaknesses such as low muscle tone or lax muscles which delays gross motor development affecting their ability to roll, crawl, sit and walk.

Challenges and Milestones

As expected of children with Down Syndrome, “typically, Soraya’s physical developments are a little behind,” explains Afida, adding that Soraya was only able to walk independently when she turned two. “That is why it is very important for children with Down Syndrome to receive early intervention.  All the sensory inputs, therapies and exercises have helped her achieve her developmental milestones and self help skills. Today she has good gross and fine motor development. She runs, walks, climbs, crawls, and dances. She can dress herself, pick her own clothes and is now in the process of being fully toilet trained.”

What a beautiful mess! Soraya has fun getting creative with colours.
What a beautiful mess! Soraya has fun getting creative with colours.

In terms of other characteristic challenges, Afida says that Soraya is also speech delayed, “but with the on-going speech therapy programmes at KDSF, she now speaks two-word sentences, sings, is able to understand instructions and requests, recognize some alphabets and phonic sounds and is even currently learning sight words.”

Afida gives a lot of credit to the support of the family, especially Soraya’s siblings who have been very involved in their baby sister’s development. In fact, they have been instrumental in helping the little girl achieve the milestones that she has; always accompanying her to therapies whenever they can and ensuring they get Soraya to practice and exercise all that she has learnt in class at home.

But more than just practicing exercises, they ensure that Soraya is included in all of the household’s daily goings-on as they always involve her in their activities and vice versa.

Afida confides that, in fact, it is through Soraya that the family has grown closer together. Like a gift, she is the anchor that has given the family focus and strength, rallying them together as a unified team.

Even though Down Syndrome children are said to have musculoskeletal weaknesses, it is obvious Soraya is quite the athlete!
Even though Down Syndrome children are said to have musculoskeletal weaknesses, it is obvious Soraya is quite the athlete!

Team Players Inc

It goes without saying that success lays not only on the child’s own learning momentum or her mother’s dedication but also the whole support network ─ the most important being family members and close friends, then Kiwanis and all the circles of mummies of children with Down Syndrome, therapists, doctors, playleaders, caregivers and Kiwanis’ parent support group as well as the media for raising awareness.

Soraya’s confidence and individuality is growing day by day. At a CNY celebration in a shopping complex recently, she approached the “god of wealth” all by herself to ask for a sweet.
Soraya’s confidence and individuality is growing day by day. At a CNY celebration in a shopping complex recently, she approached the “god of wealth” all by herself to ask for a sweet.

“As a parent, of course I want the best for Soraya and I will guide her to be as independent and as socially-included as possible,” Afida says in earnest.

“However, the concern is ─ people need to unlearn the negative connotations associated with a diagnosis like Down Syndrome.

“We need to look at their abilities instead of their diagnosis. Each child is unique with various abilities and each ability is a gift. They too have dreams and emotions like anyone else. The challenge now and the future is acceptance and inclusion.”

“We need to look at their abilities instead of their diagnosis. Each child is unique with various abilities and each ability is a gift. They too have dreams and emotions like anyone else. The challenge now and the future is acceptance and inclusion.

“They are children, we need to unlabel them in order to understand them. Give them the opportunity and they will show you what they are capable of.”

 

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