Child Development

World Down’s Syndrome Day 2023: With Me, Not For Me

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In 2019, makchic contributor Li-Hsian Choo shared her daughter Isha’s story publicly for the first time, regarding Isha’s diagnosis of Down’s Syndrome. Since then, she has had several shifts in her personal perspectives towards parenting and more importantly, the subject of inclusion and inclusive education. Read on for the continuation of her family’s story and the lessons she’s learned along the way: 

Our Journey So Far

Over the last 9 years of Isha’s life, we have had a chance to reflect on the importance of inclusive education and building an inclusive society. If only we lived in a society that fully supported families of children who are different in any way. We would not fear to have a child with a disability or who was different, as much as we do today.

We have seen first-hand how inclusive education honours all children with all their diverse traits (racial, cultural, physical and also neurodiversity), different abilities and super powers. We have realised that inclusion is needed more than ever today, not just by individuals with special needs, but by everyone. Even if we do not suffer a disability from birth, illness or an accident, we will all eventually grow old and weak someday, or face testing times (like now) where we may need help from others.

World Down’s Syndrome Day 2023: With Us, Not for Us

Many kind people have told us that Isha is lucky to have parents like us but I think we are the lucky ones really. Being parents to Isha has genuinely helped my husband and I to grow not just as parents, but as individuals.

Our journey as Isha’s parents has nicely dovetailed into this year’s World Down’s Syndrome Day 2023 theme of “With Us, Not for Us”. This year’s theme is especially meaningful for us as we have always had a problem with the outdated charity model of disability, where people with disability were treated as objects of charity, deserving of pity and relying on others for support. Or in Malaysia, as we say, the “kesian” (“oh, pity him or her”) model of disability.

The “kesian” viewpoint that disabled people are unfortunate but innocent victims of circumstance who should be loved, cared for, and shielded from harm is limiting. The perspective that disabled people are naturally inferior is also untrue. Both beliefs are harmful to healthy relationships between disabled and non-disabled people, and sometimes even between disabled people themselves.

On World Down’s Syndrome Day today, we are glad that global organisations like Down Syndrome International (DSi) are adopting more of a human rights-based approach to disability. The message of “With Us Not For Us” is key as it asks general society to view people with disabilities as having the right to be treated fairly and having the same opportunities as everyone else – working With others to improve their lives, not just having others do things for them and in their stead.

Isha’s Milestones

I feel that this paradigm shift and the emphasis on “working With others” is so important, as very often, we short-change individuals with Down’s Syndrome and other disabilities by assuming that they cannot help or advocate for themselves, do difficult things and expend effort to improve their own lives. Our daughter Isha has shown us that she can set higher level goals, reach for them and do difficult things. Of course, she sometimes needs some scaffolding and the kind support of others but she can often meet us halfway or more, surprising us in so many ways.

Over the last 2 years, Isha has learned how to read independently, take notes in school, do presentations, solve simple maths problems, answer comprehension questions, read simple Mandarin and write Mandarin characters by herself. She has danced in Bharatanatyam recitals with her dance school friends and played the violin in a school ensemble. She can swim the length of a twenty-five metre pool without stopping, cycle a bicycle with training wheels and on a weekly basis, she walks two rounds of the Bukit Kiara Hill reserve (about 5 kilometres in distance), a route with some pretty steep hills. She has a good homework ethic (even better than her brother!) and usually likes to complete her daily homework before rest and relaxation.

Her most recent milestone is going to her school’s outward bound site in Port Dickson for a 4-day school camp on her own. In line with our new mantra at home for Isha: “Isha can do difficult things” (and succeed!), we trained for this event for 6 months at home. We supervised her at bath time – ensuring that she could bathe and wash her hair well (with all shampoo off!) independently. She practiced how to change in a small, wet toilet. We simulated camp conditions by getting her to bring a waterproof bag with her towel, toiletries, and clothes into the home shower, and to change there instead of the bedroom. We reminded her to eat fast and not be picky with food (fortunately, we already established good habits early on). We also emphasised the importance of looking after her belongings. With some support from kind and caring teachers and classmates, she had a wonderful first experience away from home, and came back with everything intact!

Navigating A Neurotypical World 

As a mum to a neurotypical child like Isha’s twin brother Akash, I have also been able to see the situation from the other side. My unique perspective informs some viewpoints I have about this matter.

It has been very natural for my son Akash to be selected as a buddy at school for differently-abled classmates, as he has had more exposure to this situation and understands the nuances that come with supporting a special sibling. Even though his experiences have made him a more thoughtful and inclusive child, there are still instances where he has felt frustrated or overwhelmed.  For example, when he wanted to go out to play soccer earlier at break time (but had to sit with his special classmate), or when he wanted to work with different kids on classroom tasks (but had to stick with the special classmate). After all, he is only a 9-year-old child himself and should not be unnecessarily burdened by a big responsibility. For siblings like him, school is often the “break” they get from their special sibling responsibilities at home, really.

These incidences have made me reflect deeply on how I parent a child with special needs. It makes me very conscious too, of overwhelming the neurotypical classmates and friends of Isha, and their parents. We have been lucky to have parents in my daughter’s class who, whilst they do not have any children with special needs, are still amazingly supportive and understanding. Still, I feel we must not take advantage of the ongoing goodwill shown by these families and take them for granted.

Being Open and Honest

Photo by Dani Guitarra on Unsplash

My personal opinion is that it is important to be open and honest. I know this is not always easy, as all parents of differently-abled children need to find their own path to this realisation and to become stronger as well themselves. Sometimes, this path is fraught with thorns, trauma and scars from discrimination and earlier bad experiences. Our family has had our own fair share of these.

Still, we believe that in the long run, being secretive and evasive about your child’s diagnosis for no good reason and hoping it will “disappear” if you don’t acknowledge it may harm him or her in the long run, especially if the condition escalates and becomes more severe (due to lack of professional intervention), or when the child grows older. It also harms the larger movement and spirit of inclusion and inclusive education (as schools that were formerly inclusive but need to deal with the negative repercussions of these situations may become less inclusive with time).

Lending Strength and Support

As parents of children with special needs, we definitely have to rely on others – other children, their parents and teachers – to support our child with special needs, particularly in the mainstream classroom. However, I think it is very important for parents like us to also pull weight, continuously working with our child with special needs to help them become more independent, stronger and less reliant on others for every single thing; and to not be disruptive or be a big burden to others. We must help our child become easier to support.

If issues arise, we need to be accountable to our larger community by actively seeking out professional help from teachers, counsellors or educational psychologists at school, or from external professionals. This would enable us to come up with strategies together to overcome the issues positively. If we are fair and honest, the school too can reciprocate by equipping the staff with the right skills and resources to support our child. Of course, outright rejection can occur when we are upfront, but this can also indicate to us whether the said environment is really suitable for our child.

When Differences Don’t Matter So Much

Source: Emrabell Bell on Unsplash

In the spirit of “With Us, Not for Us”, children with special needs should be valued for their own worth that they bring to the table, not as subjects of charity that others need to constantly help with no question. If both types of children adjust, adapt and improve, then both groups (special children and regular neurotypical children) can co-exist happily, and learn valuable things from each other. Regular children would also feel enriched and encouraged to support their friends who need help. Conversely, if problems are swept under the carpet and left to fester, even the kindest and most inclusive children can feel overwhelmed and tired, leading to them slowly ignore, isolate the differently-abled child and eventually display mean behaviour towards them.

Contrary to what some people believe, differently-abled children and individuals are not here to “teach” us or our children how to be caring, kind or compassionate. Like any and every other child who is unique in their own way, my daughter is simply a representation of the diversity that exists in the real world. When other children (and their parents) acknowledge her significance, as well as her personal efforts and contributions, and simply support her as they would any other child, something magical happens. Differences don’t matter so much.

Happy World Down’s Syndrome Day, #makchicmumsquad! 

Li-Hsian left a career in corporate communications to become a full-time mum to twins. She is learning new things daily as she tries to balance the romance of motherhood with the messy realities of her latest role. She is also currently the co-facilitator of the Art Discovery Tours for Kids and coordinator of children's programmes at the ILHAM Gallery in KL.