Malaysian mother runs free book club for children with Down syndrome

Reading is vital for children with Down syndrome (DS) as it enhances language skills and promotes social inclusion. Photos: The Star/Art Chen

Every Monday night at 8pm, Nikita Toh Tik Ean, nine, looks forward to her virtual book club session with her friends. There are 12 members in the club, which caters to children and teenagers with Down syndrome (DS).

During the one-hour sessions, Nikita and the other young book club members take turns reading – each one tries to read at least one page of the chapter that’s being discussed for the particular session.

Her mother, Melanie Oh Yeok Mei, 48, says her daughter enjoys the free book club sessions, as they motivate her to read.

“Before joining the book club, Nikita was going through a challenging phase with her reading. Her teacher would assign books weekly but every time I’d suggest reading practice, she would resist to the point of crying, even.

“But since she has joined the book club, Nikita is encouraged to read from the illustrated pages. This has helped her build up confidence,” shares Oh.

Oh (left) says the reading club sessions has boosted Nikita’s confidence in reading, something she does on her own now.

“The sessions are very interactive and you can see that all the kids are engaged from start to finish. They are also encouraged to voice their opinions and share their own experiences. It’s a joy to watch them relishing the learning,” says Oh, an executive director of an investment holding company, during an interview in Petaling Jaya, Selangor recently.

Oh is grateful to her good friend, freelance writer and art facilitator Choo Li-Hsian, 51, who set up the book club in 2022.

Choo’s daughter Isha Iyer, 10, has DS too, and she started the club to build confidence, enhance reading skills, and social interaction among the community with special needs. Members are between the ages of eight and 15.

Choo (far left) believes that the initiative has fostered a love for reading among children with Down syndrome.

Nikita has been part of the club since its inception.

“A year into book club, I noticed that Nikita started picking up books on her own initiative and reading them aloud at home. I have a big family and we don’t watch television so the children get their entertainment mainly from books. Nikita mostly reads graphic novels or magazines like The Young Scientist which has lots of illustrations,” explains the mother of five.

She thinks such book clubs for young children with DS are helpful, crucial even, because they pave the way for better understanding in learning.

Children in the book club especially enjoy engaging in colouring activities.

“YouTube can teach one almost anything, but there is much in our lives that is still dependent on reading, for example, signboards, manuals, WhatsApp messages and emails, recipes and maps. Reading grows the mind.

“Children with DS are often visual learners and require ample repetition and time to grasp concepts that may come more easily to other neurotypical children.

“Due to challenges in their working memory, sight reading does not come naturally to them. In my experience, phonics has proven beneficial by teaching them how to blend sounds. This approach provides them with a safe environment to express themselves and share without fear of judgment.”

Inclusive reading

Choo started the book club during the pandemic due to concerns about how her daughter’s learning would be affected by the school closures because of the movement control orders that were imposed to contain the spread of the virus.

“At the start of the first MCO, Isha could not read yet, while Akash, her twin brother, a neurotypical child, had just become an independent reader.

“I started the book club for children with DS after witnessing the significant positive impact that two previous book clubs, which I had organised for my children, their classmates, and friends during the pandemic, had on their language skills and enjoyment of reading.”

Choo (right) was inspired to set up the book club for her daughter, Isha, who has Down syndrome.

Choo volunteers to hold free book club sessions for children with DS to support their language skills development.

“I know the children really look forward to these sessions. I feel really happy that children are excited to come weekly to a session to read books and discuss their themes together.

“A whole new world has opened up for many of them, including Isha, simply from the acquisition of this one singular skill – from responding better to comprehension questions, following written instructions, expressing themselves well to enjoying more diverse books and movies,” says the Johorean, who left her full-time job as a public relations practitioner after her twins were born.

Choo's (top, centre) initiative not only fosters a love for reading among children with Down syndrome.

Choo, explains her approach to planning sessions for children with special needs: “I need to select the ‘right’ book to cater to the different children in each particular session. Also, I need to tailor my facilitation to cater to the specific group dynamics and interest areas as well.

“My approach has been to get children to read one chapter a week (two, if the chapters are simple and shorter) before they come. I use questions from related worksheets and discussion guides sourced from online sites. I also sometimes create online quizzes on the chapters which tend to focus on the language, vocabulary and comprehension aspects of the story,” says Choo.

Power of storytelling

The children from the DS book club have read and discussed many books and a wide range of different stories, including books One and Two from the Dory Fantasmagory (DF) series by Abby Hanlon, and children’s picture books, particularly those related to Asian festive celebrations.

Choo tries to incorporate art activities to bring the stories in the books to life for the children.

“Getting the children to try to draw the characters from the DF series or an animal characters together in book club sessions by following my step-by-step strokes or a video online has helped the children to learn about the various features of the characters (like Dory from DF), or creatures from the books. For example, how a gorilla has large nostrils, a big forehead, larger forearms and also walks on its knuckles.”

The children are always happy when it’s time for their virtual book club sessions. Photo: Choo Li-Hsian

In addition to reading and language skills, Choo observes that the book club also fosters the development of other life skills not always inherent in children with special needs, such as punctuality, active learning, expressing opinions, and completing homework.

“My main challenge is the limited time I have and setting a suitable time and day where all children can come together for the sessions regularly.

“Children today are super busy with school and after school enrichment class schedules. However, I believe it is also about prioritisation, both by myself and the parents of the children involved. If you feel that something is important, you will carve time out for it and commit to attending it regularly.”

But what truly motivates Ong is the words of encouragement from parents.

“I’m always touched when parents tell me their children look forward to the meetings.

“Many like it so much that they are self-motivated to attend and sign in without being reminded. We forget that children with special needs, especially those with DS, crave connections with their peers as well. As they sometimes don’t have access to good, inclusive education opportunities, they don’t have so many opportunities to make friends or socialise.

“Childhood literacy and cultivating a love for good literature in children is something I am passionate about. Reading is life-changing. I would like to help children, especially those I know well, learn how to enjoy reading and books,” she says with a warm smile.

Choo plans to start more book clubs for children, including those with special needs, but acknowledges the need to be realistic about time and energy constraints.

“So, I will just continue these book clubs for as long as I can and as long as the children in the book clubs are interested to carry on. I think you don’t have to necessarily ‘go big’ to make an impact, you can still make an impact in your immediate community if you do something meaningful with the right motivations. Every small change you inspire in someone you touch is a positive step forward for the person,” she concludes.

Alumni Kiwanis Down Syndrome is having a talk, Supporting Young People With Down Syndrome Through Puberty And Adolescene on Sunday (March 24) (1pm - 3pm). Consultant developmental pediatrician Dr Rajini Sarvananthan will share crucial points that parents of children with DS should take note of during the critical period. For more information, email [e-mail].