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When you are expecting a baby, you experience excitement, anticipation, a very special kind of happiness. Yet, at the back of your mind, due to all the tests you have to take along the way, you always have a small worry that things will not turn out as planned.

We had a happy pregnancy without much incident. Like many families expecting multiples, we had scheduled for a C-section. Coincidently, my water broke exactly on the evening before the planned early morning delivery. I remember feeling calm and contented as I chose to finish my dinner at home before we made our way to the hospital.

So, you can imagine our shock and fear, amidst the great joy we felt from receiving our twins for the first time, when we were informed that my daughter Isha had Down’s syndrome.

Though, strangely, it wasn’t a surprise to me. Even as a brand new mum, even before the official diagnosis was delivered, I already knew. I knew the moment I saw her, when they put her in my arms for the first time that she had Down’s syndrome. To describe my feelings then, I borrow the words of blogger and Down’s syndrome advocate, Kelle Hampton who wrote about the birth of her own daughter with Down’s syndrome  – “I know I begged every power in the world that this wasn’t happening … that she was normal, but I knew in my soul exactly what it was.”

“We had no idea what to do”

My husband and I had heard of Down’s syndrome but did not personally know anyone with this genetic difference. Finding out that your newborn is going to be different from other regular children is overwhelming. Not knowing anyone else who is similar makes it even more so.

We had no idea what to do and what to expect. Googling about it led to a lot of initial misconceptions about Down’s syndrome. Much of the online content focuses on cold medical symptoms and stereotypes. Search engines, unfortunately, do not immediately bring you to essays like Welcome to Holland and sites like The Mighty that share many warm inspiring stories of similar families, and individuals with Down’s Syndrome who have defied their diagnosis, refusing to be defined by it. 

Learning about all the things Isha could potentially struggle with, compared to her twin brother, was hard and heartbreaking. We love our baby dearly. But like most families with a child who is differently-abled, we were worried about how society would view her. We worried about whether she would receive the access and support she needs to grow and learn, just like every other child.

Building an inclusive society

Since having Isha, I’ve learned more about other disabilities that are out there, many not detectable through prenatal screening and discovered only later in the child’s life. There are also all the other ways disability can happen when you have a child. 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.

I cried daily for the first few months, grieving for myself as much as for the child I didn’t have. I was very uncomfortable with my new title of ‘special needs parent.’  I (wrongly) thought my life would revolve around Down’s syndrome and become consumed by it.

Getting Support

The Kiwanis Down Syndrome Foundation (KDSF) National Centre that celebrates its 30th Anniversary this year, was a lifeline to us during this difficult period. It lent us strength in the first few months post-diagnosis before we were able to draw on our own. It helped us find a ‘new normal’, providing us with rich resources related to the genetic condition. The centre also put us in touch with families within their Parents Support Group. This group gave us critical tips and the emotional scaffolding we needed at the time. Meeting these families, some who were further down the journey, made us feel less alone. It helped us to quickly get back on our feet and focus on what we could do to support Isha.

The therapy-led early intervention programmes, together with the love and encouragement she received at KDSF’s National Centre gave Isha a great start in life. She became independent and confident at an early age. At two, she was able to transition into a wonderful inclusive mainstream playschool. Now, at the age of five, she attends an inclusive mainstream “big” school that helps her to not only try to keep up, but to keep learning with her peers.

The right people, the right champions

We’re learning every day that what children like Isha need the most are not medical and other experts. They need people who are willing to champion their potential. People who can look beyond their diagnosis and work with their parents to optimise their many abilities. Those who make a little extra effort to include them in events and activities where possible. My husband and I are very grateful that Isha has been fortunate enough to encounter many such champions in her life so far – doctors, therapists, teachers, other parents and caring people in our community.

Our lives have indeed changed significantly, but for the better. Our family has benefitted richly from having a child like Isha. I think I am personally more patient, compassionate, understanding and accepting of differences. My husband and I have learned a lot about child development strategies. These we have also applied, to great effect, on her neurotypical twin brother. Of course, there are challenges – which family does not have any? But we have also learned to celebrate every small victory.

Exceeding Expectations

Our little warrior, Isha, has already exceeded many of our initial expectations and dispelled many of our earlier misconceptions about Down’s syndrome. She continues to inspire us and bring joy to those around her daily with her sunny disposition and fierce “can do” spirit. By just being,  she breaks down stereotypes and shows everyone that disability does not mean inability.

I also believe that when people, especially other children, interact with her, they also learn to be kinder. They learn to be more open and accepting of differences in others. These children, my own son included, will hopefully grow up to become caring parents of children with or without special needs, and community-spirited members of society who will create and support solutions that benefit all people. After all, we will each eventually grow old and weak someday, or face testing times where we need help from others.

How we choose to narrate our lives and frame our stories can make or break us. While this turning point in our lives has been quite unexpected, we are really grateful for both our children. We are grateful for this extraordinary opportunity to re-write our family narrative and re-frame our story in a more positive and purposeful way. We hope that all families with children like Isha will find the same strength and support to do so.

Happy World Down Syndrome Day 2019!

Photos are from Li-Hsian’s personal collection.

Therapy Through Play launched by We Rock The Spectrum Kid’s Gym and partners

Imagine a one-stop place lovingly and specially created to provide affordable therapy, support and play for children with autism.

We Rock The Spectrum Kid’s Gym (WRTS), an inclusive play gymnasium in Ara Damansara, recently launched a programme called ‘Therapy Through Play’, featuring fun and friendly sessions for children with special needs. Crucially, the sessions will also include the occupational therapy these children require, and at half the price of what parents would usually pay.

Recently launched by Y.B. Khairy Jamaluddin, Member of Parliament for Rembau, and his wife, WRTS co-owner Nori Abdullah, this programme also includes incredible partners: multi-disciplinary children’s centre The Energy Source, the National Autism Society of Malaysia (NASOM) and The Autism Cafe Project.

Husband and wife team, Puan Nori Abdullah and YB Khairy Jamaluddin

Making therapy accessible for all

The motivation to establish TPP came from Nori’s own experiences as a mother to a child with autism. Her second son, Timor Abdullah, requires occupational therapy up to six times a week, and she said she greatly understood the importance of early intervention.

Nori said she was thankful for being able to afford her son’s therapy, but acknowledged the fact that affordability and accessibility to the suite of therapies required for a special child could be a real challenge for the average Malaysian. This included occupational therapy, speech therapy and physiotherapy, among others.

In his speech at the launch, Khairy also emphasised the importance of early intervention made possible with early diagnosis.  “If your child has a developmental challenge, seek a diagnosis immediately and explore early intervention.  There should not be any denial syndrome among Malaysian parents,” he said, urging for more awareness in the country about this topic.

Nori and Raif “Leo” Averroes, her youngest son, at We Rock the Spectrum Kid’s Gym (Photo: WRTS Facebook)

What is Therapy Through Play (TTP)?

Combining WRTS’s specialised gym equipment and The Energy Source‘s expertise in occupational and sensory integration therapy, TTP will see a customised programme developed for the needs of each child and their parents or guardians. The inclusive play gymnasium said it had seen positive results for children with special needs who regularly use gym equipment with the right support. This helped in the reduction of the children’s anxiety and increased their social interaction with others.

How Can My Child Enter the Programme?

If you have a child you think will benefit from the programme, here is what you need to do:

1. Screening

Set an appointment for a free screening by a qualified therapist at WRTS, Ara Damansara.

Cost: An entry fee of RM48 is applicable.

2. Customised programme

The therapist will design a customised four-month programme for each parent and child.  The therapist will also train the parent/guardian to conduct the sessions independently so that therapy may continue without the therapist present.  The objective of this is also to strengthen the bond between parent and child. At the end of four months, a review of the child’s progress will be conducted.

Cost: RM282 for the customised programme and three sessions with the therapist.

3. Access to WRTS

The programme requires access to WRTS at least once a week.

Cost: Instead of paying RM48 each time, WRTS offers an affordable package of RM336 for 11 visits. 

Outreach for underprivileged children

Nori and Khairy said the gym would also assist underprivileged families with special needs children. WRTS has successfully raised funds to sponsor one cycle of TTP for 50 children.  “Therapy can be life-changing, but it is expensive. In Kuala Lumpur, it can cost anywhere between RM150 to RM300 to see a specialist. This is beyond what is affordable for most people,” Nori said at the launch.

To be eligible for sponsorship, the child would need to meet the following criteria:

  • A Malaysian citizen living in the Klang Valley
  • Between the age of 3 to 12 years
  • The child has an OKU card or an official diagnosis of developmental delay
  • Total household income below RM4,000 per month
Demonstration – Using a Swing in a Therapy Through Play Session

Challenges for young adults on the spectrum

The launch also saw the inclusive gym addressing another great challenge for those with autism – gaining employment. WRTS is therefore supported by the Autism Cafe Project, which was established in 2016 by Mohd Adli Yahya, a father to an autistic child. 

The cafe provides an avenue for youths with autism to achieve independence.  With a cafe operating in Puchong that is run by young adults on the spectrum, the cafe also does catering for events. In addition,  they sell baked cookies, handicrafts and printed T-shirts. 

During the launch of TTP, the Autism Cafe Project set up booths selling items made by youths with autism.

Through the launch of Therapy Through Play, WRTS ultimately hopes that any Malaysian child who needs therapy will have access to it. Their goal is to help these special children and their families achieve possibilities they may never have thought possible.

 

To apply for TTP,  you may call 03-7859 8081, Whatsapp 010-939 5711 or email [email protected]. You may also visit WRTS at Level 2, Evolve Concept Mall, Ara Damansara for more information.

Initial thoughts

When I first heard about Sunway Putra Mall’s Autism Friendly Shopping Day, I was quite skeptical. My son, Haans, is three and half, with moderate autism. Shopping with him can either be enjoyable or extremely exhausting. Autism is a spectrum after all. So, I have learned to expect the unexpected on outings.

One Tuesday morning, I chalked up the courage to bring my son to Sunway Putra Mall, by myself. Daunting and with no expectations in mind, I braved morning traffic from Shah Alam to the heart of Kuala Lumpur.

Planning the outing

A few days prior, I went to the website, to find out about the facilities available. My first thought, parking privileges available but we need to go the Concierge to pick up the kit first? So, I filled up the GoogleForm online and proceeded to send an email to inquire of the parking privileges. Within a day, I received a reply. My car details were taken, and someone from concierge offered to meet me at the parking lot with their Autsome Kit.  Sunway Putra Mall named this initiative Autsome which stands for Autism is Awesome.

Arriving at Sunway Putra Mall

I arrived rather early, hence, parking was abundant since it was also a weekday. Since my son was in good spirits, I parked at the first available lot in sight. I also thought to leave the reserved Autsome lots for others who may need it more than I.

Reserved Autsome parking bays at level B1
The Concierge at G Level, Sunway Putra Mall

Quickly, we made our way to the Concierge at G level. Walking in, I was quick to notice three very important things:

  • Lights were dimmed – an important element for some on the autism spectrum. Some experience more sensory issues than others whereby excessive lighting could disturb them.
  • Music volume was low  – I could hear music but not as loud. It was pleasant and calming. Loud sounds also tend to bother some people with autism.
  • My son remained calm  – my son was happy to enter in this new, unknown place. He is usually quite wary of new places, at times even refusing to enter. This time however, he entered happily with that curious cheeky smile of his, intent on exploring!

The Autsome Kit

We received our Autsome Kit. The friendly concierge was quick to tell us about some of the privileges we could enjoy. He pointed out key areas such as the Sensory Walls and informed us of the Calm Room available at the Lower Ground Level. At that point in time, Parenthood and the Cat Playground were offering free entry for anyone with the Autsome band on every Tuesday (provided it is not a public holiday).

Autsome Kit containing a pamphlet, parking sticker and Autsome band

The concierge kindly offered to show us around. I thanked him but preferred to explore on our own, as I had to be guided by my son’s temperament too.

So, we began exploring…

Our first stop was the Parenthood, an indoor playground. By showing the Autsome band, we were allowed in immediately.  The play area is huge! Being a weekday, we had the place to ourselves. My son was a little reluctant to enter at first but calmed down rather quickly. I noticed the area was child safe, so I did not need to restrict his movement.

Haans found his way to the ball pool at The Parenthood

I believe he enjoyed not being restricted and was quite happy to roam about freely. He took his time to explore and overall had a pleasant experience here. Next, it was time to move on…but first…meltdown number 1. He did not want to leave, so I proceeded to my usual, carry him (kicking, screaming and all), under the watchful eyes of passersby. Up the escalator we went.

The sensory walls

We arrived at the first Sensory Wall! And what a blessing it was. He was intrigued. At first, I semi-forced him to touch the different textures. There was a good mix of soft and rough textures, shiny surfaces and an assortment of shapes. Eventually, he started to explore it on his own.

There are 3 Sensory Walls in the mall on Levels 2 and 3. Positioned rather strategically along these two levels, it is a good “in-between” break for parents who are shopping with children. In fact, this wall benefits all children and can be a good distraction. The walls also gave me a chance to take a breather in between meltdowns.

Haans exploring the sensory wall after some prompting

What next?

After exploring the various Sensory Walls along the way, we went to the Cat Playground on Level 1. Here, my son enjoyed laying about on the large cushions and rolling around with the friendly cats. Interesting fact, cats can provide an avenue of positive relationships for children with autism. Cats tend to be affectionate, benefiting children with autism and their families.

The Cat Playground also works with Dr. Khew who runs Animals For Young, a centre that provides Animal Therapy and other services for individuals with special needs. Animal assisted therapy incorporates the use of animals such as horses, cats, dogs and so on. It has been an effective form of intervention for individuals with special needs such as autism.

Tactile walking path around the trampoline typically used in therapy for children with autism

Time to calm down

Needless to say, he had a ball of a time with the cats. When it was time to leave, the ultimate meltdown ensued! Rolling on the floor, kicking and screaming. It’s a blur to me, but we somehow, we made it to the “Calm Room” at the Lower Ground Level (next to Nandos).

We entered and he began to calm down as he sought comfort in soft textured pillows coupled with the “music turtle” playing calming music in the background. This room is fully equipped with sensory toys, pillows, a comfortable couch, and even a weighted blanket. It is clean and lighting dimmed which does not overwhelm someone who is already in a “tantrum mode”. It also gives the parent a chance to calm themselves down from dealing with a meltdown, or just a few minutes to catch up on messages or return important phone calls.

Why Autism Friendly Shopping Day?

We asked Sunway Putra Mall, why autism? Ms. Phang Sau Lian, General Manager of Sunway Putra Mall said,

“When we first approached this initiative, we found one thing in common amongst our colleagues; a number of us knew at least one person with autism and the challenges they face in public places like shopping malls. Thus, this project is very close to our hearts. We decided to embark on this journey to advocate Autism Awareness.”

The aim is to provide an inclusive and comfortable shopping experience while creating awareness towards increasing public understanding of autism. Sunway Putra Mall will also extend these privileges to other types of special needs in addition to autism. There are also plans for another Calm Room on Level 3 which should be ready by the third quarter of 2019. As for other Sunway Malls, the management says it is being considered.

In a nutshell

Registration is only required for the first visit. Patrons are encouraged to reuse the Autsome bands for subsequent visits. The Autsome initiative  includes the following privileges daily:

  • Access to the Calm Room at level LG
  • Sensory Walls on Levels 2 and 3

Every Tuesday 10am – 5pm (except public holidays) – Autism Friendly Shopping Day includes the following:

  • Dimmed lighting
  • Lowered volume levels
  • Reserved Parking at Level B1 (first come first serve basis). Stickers available at the concierge upon online registration online.
  • Special discounts and privileges offered by participating tenants. List available here.
  • Assistance from concierge personnel

Despite my son’s tantrums and meltdowns, it was a positive experience. The Sensory Walls certainly do create a welcomed distraction. The Calm Room is indeed a blessing too. Overall, Sunway Putra Mall has made an excellent attempt at being Malaysia’s first Autism Friendly Mall.