When mum-of-four Soek Ying Koh found out her son Ryan was on the autism spectrum, she immediately embarked on a mission to raise awareness and acceptance of the condition in Singapore. Here's her inspiring story…
What is it really like to raise an autistic child in Singapore? Is there enough support? Is Singapore accepting of children with special needs? How do you find the right therapy? And how do you juggle that therapy, cope emotionally and raise a family at the same time?
Soek Ying Koh is a mother of four, including Ryan, who is on the autism spectrum. Determined to help create a life of independence for Ryan, she founded Mustard Tree, which trains young artisans with special needs and has evolved into an online and brick-and-mortar store at Ng Teng Fong General Hospital. Soek Ying is on a mission to raise awareness and acceptance of autism and the differently-abled in Singapore, and to help others like Ryan find their sense of self-worth. Here, she shares her story with HoneyKids…
Ryan was two when his preschool teacher shared her suspicion that he could have autism.
Back then, information was limited and very fragmented, and there were few experts here in Singapore. We had to wait a long time before we could gain access to help and deciphered most of the information ourselves – paediatricians, speech pathology, occupational therapy, psychologists, Glen Doman, ABA therapy… you name it. We were pretty much running around like headless chickens! The most daunting of all? The cost.
We were in shock, of course.
Then came: what did we do wrong? Was it hereditary? It didn’t make things any easier with the older folks bringing in some old wives’ theories! I’m thankful that my husband Barry and I came to terms with Ryan’s autism very quickly. We did not dwell on negativity, but immediately started researching the topic. Acceptance is very important. Our son depends on us. We did not want to waste time.
Back then, literature supported the theory that by age seven, if your child does not speak, then the window of learning diminishes and you will lose them. So we went on a rampage to find all the support our son needed. I have to confess: I hated celebrating his birthdays because they were a step closer to the dreaded seven. But age seven came and went without any big drama, and Ryan was making baby steps towards improvement. While his speech was still delayed, he made progress in other areas, such as his behaviour. This gave us hope.
Above all, what kept us going was the strong belief that Ryan is a gift from God, and life does not give us things beyond our abilities. That faith kept us going.
Singapore has come a long way since then…
Awareness has definitely increased, as well as the level of support and related services. Acceptance and understanding, on the other hand, are still very limited. Many are quick to judge. Often, if you see a child having a public meltdown, the immediate thought is ‘bad parenting’. What’s worse is when people see an adult behaving differently, they are quickly labelled as ‘mad’. You may be surprised, but many parents still think their children can get ‘infected’ if they mix with children with autism, and many families still avoid going out for fear of the stigma, or what people will say of their child.
My skin has thickened over the years. Ryan is entitled to the space and air around him as much as you and I.
What really made a difference?
Early intervention, and consistent and intensive therapies. Occupational therapy is also key to helping Ryan develop purposeful daily life skills.
For the rest of us (my husband Barry, and Ryan’s siblings Nicholas, Christien and Gabrielle), having a supportive and understanding extended family and friends really helped in alleviating a lot of mental and emotional stress.
The number of children and young adults needing help still exceeds the support and services offered, but what’s more important is progress and speed…
Parents have been crying for the Special Education (SPED) school-age limit to be raised to 21, and finally, there have been some SPED schools that do keep students past the age of 18 years, including Metta School, Pathlight and Delta Senior School. Most schools, however, are still only taking students until they are 18. Schemes and support services are either unavailable or very fragmented.
Government schemes cannot be rolled out sequentially. It has to be concurrent: early intervention for pre-schoolers, learning support in SPED schools and employment support for those over the age of 18. We need a system to catch our children when they transition at different stages. Gaps cause disruption to learning and progress. If we do not hasten support and training now, it’s going to be a societal issue later on. What can 70- or 80-year-old parents do with a 55-year-old special child?
My son’s greatest challenge is gaining the life skills and work skills to face life after 18…
School is a secure and structured environment. Post 18, life literally hits you like a ton of bricks. Due to his autism, Ryan’s development and learning are delayed. He is a child trapped in an adult’s body. Legally, he is an adult, and we can no longer help him to make life decisions or medical decisions. But, he cannot operate a bank account. He cries when he is upset. He laughs when he is happy. Period.
Ryan can never be totally independent. But if society is more understanding and accepting of him, his journey could be less sheltered and restricted.
Mustard Tree was inspired by Ryan.
Seeing Ryan out of the school system without employment, we decided to train him ourselves. It started with us trying to build upon his sewing skills as he is blessed with good fine motor skills. We weren’t crafters, so we had to learn the process of leather crafting and translate it into bite-sized steps for Ryan. What started as proud sharing on Facebook by a mother eventually led to people asking to buy Ryan’s products.
We felt there are others in a similar plight, so we approached an industry expert and developed our first training program in flower arrangements for people with special needs. The program is also supported by SG Enable, an agency dedicated to enabling people with disabilities. We have since trained many students, some of whom are working with us full-time. We want to empower youths like Ryan with comparable craft skills and give them a sense of self-worth.
My greatest hope is that Ryan will be able to take care of himself. I worry about who will take care of him when we are not around. Yet, I’m so proud of the many milestones that he has achieved. I’m most proud of who he is – my Ryan. I want others to know he is a sweet-natured young man, simple in needs and full of joy.
I want other parents to know that acceptance is the first and most important step in helping your child.
Allow your child to develop at their own pace – not by your standard, or the world’s standards. As long as there’s an improvement, no matter how big or small, there is hope.
Photography: courtesy of Soek Ying Koh and Mustard Tree.
This story was first published in 2017.