2 year-old Ryan was a jovial boy. He was in fact, conquering his developmental milestones ahead of his older brother.
Mummy Soek Ying recalls, "He was able to call daddy, mummy and kor kor."
"Then, slowly, he became quiet, often with a distant look in his eyes. He just stopped talking. He started having prolonged bouts of crying fits. It could last for hours."
"He had an obsession with long objects like a marker pen. He would hold onto them for hours. If you tried taking it away from him, that would trigger a crying fit. He would be affected by loud noise like the sound of a plane, vacuum cleaner, drilling. He would flap his hands."
Ryan's parents soon realised that these were all typical symptoms of Autism Spectrum Disorder(ASD). Today, Ryan is 22. Mummy Soek Ying shares with theAsianparent her journey as parent to an autistic child in Singapore.
Parenting an autistic child in Singapore
The initial days were both tough and confusing for Soek Ying and hubby Barry Koh. Both Soek Ying and Barry are Co-founders of social enterprise Mustard Tree.com.sg Pte Ltd. Barry is also part-time lecturer at Ngee Ann Polytechnic.
"As we were still not familiar with autism, we thought Ryan was being a brat by acting up the way he did. It was his play school teacher who brought it to our attention."
"She suspected that he could be on the spectrum and she was kind enough to gather some materials for us to read. She also advised us to go to a specialist to get him assessed. This was the turning point in our lives."
"It was the start of endless consultations with doctors and therapists."
How did specialists come to the conclusion that it was autism? Was any treatment / therapy done?
"During those days, there were limited subject matter experts. We went to one of the few doctors who were familiar with the condition. We also went to NUS Child Behavioural Centre."
"Several tests were done to rule out other medical conditions, for example: hearing test, blood test etc. Finally, it was concluded that he was on the spectrum."
"We started PECS (Picture Exchange Communication System) for him at NUS. We also saw a speech therapist and occupational therapist. Ryan was put on a Gluten-free casein-free diet (GFCF) diet. We also consulted a Psychologist."
Limited knowledge of autism back then
Soek Ying tells us that that back then, there were limited resources on autism in Singapore.
"The awareness and literature were limited. The rule of thumb then was - "If your child does not speak by age 7, the window of learning closes. You will lose your child.""
"It was like a death sentence. We dreaded every birthday he had. It was like counting down the days."
Thankfully, what helped them then was a sound support system, "We were very blessed to have a good family support system from both our parents."
"Everyone was very accepting of Ryan. They were all very anxious for us. My dad would help to ferry Ryan for some of his therapies. At other times, he would go with our helper."
"As both of us worked full time, we also set up a system at home whereby my helper would do PECS & ABA (Applied behavior analysis) with Ryan, reinforce exercises done at the OT and speech therapist."
"We had an ABA therapist who would come over once a week to work with him. In a way, Ryan was fortunate to have very intense therapies during his formative years."
Growing up as an autistic child in Singapore
What about Ryan's education? What were some of the challenges that he had to deal while growing up?
Soek Ying reveals, "Ryan didnt really speak till age 4/5. Even then, it was mono-syllabic and very limited - Yes, No."
"For over 2 years, there was this wall of silence. We tried so hard to break through but couldn't. We were often met with screams and shouts or just blank stares."
"I remember he suddenly called me "Mummy" at around 4+! I cant really describe the wave of emotions that came over me! That day, I cried buckets of tears..."
"Due to his behavioural and speech delay, school was very challenging. As the class sizes are usually pretty large, it was difficult for him to follow and cope."
"We initially placed him in a private special education kindergarten. However, the school fees were very high and he was undergoing very rigorous weekly therapies (they cost at least $100-$120 per session of private therapy). It was very hard on our finances."
"We chose to go private because appointments at the government agencies were difficult to get.There were typically very long waiting lists. However, we were were anxious to get intervention for him as early as possible."
"After about a year, we decided to transfer him to a normal kindergarten (Cannosian Convent Kindergarten). We felt that we should spend the money on getting him as much therapy as possible."
"It was a lonely journey for him. He has no friends."
"But fortunately, we have a large family and extended family. They have all embraced him and showered him with a lot of love and attention."
"At 22 today, his speech is still pretty limited but from where we first started, he has come a long long way. He is able to now ask for simple things, ask to be excused, sing some songs, use the computer pretty well to search for his favourite Barney & Friends movies."
"He can definitely ask for his favourite food like - KFC, french fries, coke, nuggets!"
"Ryan has very good fine motor skills and eye-hand co-ordination. He is able to handle the needle very well. He is also able to work the sewing machine."
"Ryan does leather crafting as well as various forms of craft like decoupage on different medium."
Challenges of raising an autistic child in Singapore
What were some of the challenges you faced while raising him? Did you ever feel like giving up?
Soek Ying shares, "The frustration of not being able to understand him. It pains you when you see your child crying in pain and yet you cannot help him or understand what ails him."
"The frustration of the support system. Every SPED (Special Education) school has long waiting lists. The curriculum in SPED schools are still pretty much academic focused."
"Cost of the much needed therapies are so high. These children need frequent and regular therapies, yet, the costs are so daunting, and not many families can afford them."
"People like Ryan have a long learning curve. They have developmental delay. Yet, the school policies are done such that school stops after 18. They have so much to learn and yet, life after 18 is a steep fall down the cliff."
"Many age out without relevant skills that will help them find gainful employment. So many are either left at home or placed in Day Activity Centre (DAC). When they are younger, there are waiting lists for SPED schools. It is ironic that after 18, there are long wait lists for DAC!"
"Another challenge was societal acceptance of Ryan and his friends. It's 2018, and yet, there are still many people out there who think that Autism is a disease. They can get "infected" by association. That's why many of these kids have little or no friends."
"When these children have a meltdown in public places, many are quick to judge us, as having bad parenting styles.We still have a long way to go to becoming an inclusive society."
"Yet another obstacle we encountered was when Ryan turned 21. By law, he is an adult. So we as his caregivers can no longer act on his behalf. Yet, Ryan does not have the cognitive ability to manage his own affairs."
"For us to do so, we need to apply to the Family Court to be deputised to manage his affairs. To get this Deputyship we need to engage lawyers to make the submission. Legal fees could cost between $5k - $8k. How many families can afford to pay such fees?"
"Many parents would have thought that it was a natural process for parents to act on their special child's behalf. Thankfully, we are well-read and were able to research about such things. What about those who are not?"
"But, no, giving up has never been an option. God has blessed us with Ryan, it is our duty to care for him and protect him."
Support system for autistic children in Singapore
Do you feel that Singapore has an adequate support system for autistic / special needs children? If not, what more can be done?
Soek Ying tells us, "When compared to where we were at the beginning of our journey, Singapore has come a long way. There is definitely a lot of improvement. But there is still a lot of room for change and growth."
"I personally believe that the support system can be more seamless - from early intervention to school to post school. To put it crudely, a cradle to grave support system."
"Right now, the services and systems are very fragmented. There is no single repository for information and resources. There is no seamless transition from each critical stage in a special child's life."
"For the normal child, we all know for a fact from birth, the natural progression will be to kindergarten, then to Primary School, Secondary School, Collage/ITE, Poly, University, and finally work."
"For our special child, looking for available therapies is a challenge, let alone finding a kindergarten which will accept him/her."
"Then there are the SPED schools - limited in numbers and therefore a long queue. Finally, life after 18 - what do we do? Many caregivers with adult children like Ryan are fretting over what to do next."
"A lot of policies are made for "normal" citizens, and do not take into consideration people with special needs."
"Take for example, until 2017, the Edusave Account which eventually becomes the Post Secondary School Account (PSEA), could only be used for the payment of fees at ITE, Poly, University or WDA courses."
"Yet many of our special kids, who have the PSEA, will not be going into institutes of higher learning. WDA courses may be too challenging for them too. Other available customised training were not eligible for PSEA."
"Thankfully, MOE heard our feedback and from 2017, the PSEA can be used by our special needs kids for their training."
"Training for persons with special needs are few and far between. So, even if we want to help our child further develop his potential after 18, it will be a difficult, uphill task."
"How many tuition centres are geared for persons with special needs? For that matter, how many enrichment classes are for persons with special needs?"
"Only in recent years, some brave and courageous caregivers have taken upon themselves to organise group activities for special needs children. I really salute these caregivers - for their time and effort despite the fact that they are also caring for their own special children."
Worries about the future...
As you grow older, what are your biggest worries or concerns about Ryan?
Soek Ying says, "This is a concern not just for us. It is for all caregivers of special children - who is going to take care of them when we are gone?"
"Caring for our own child has been wrought with a lot of frustration, what will happen if he is being cared for by others? It is not an easy responsibility to shoulder even for his own siblings." Ryan has 3 siblings - 2 brothers and a sister.
"However, this end is inevitable. We do think about it, but won't wast time fretting over it."
"It is best we focus on the present and do as much as we can to empower and enable him. We strongly believe that Ryan still has a long growth runway. Therefore, our mission is to help him realise as much of his potential as possible."
Advice for other parents
It has been a long journey for mummy Soek Ying. We ask her what advice she has for parents of special needs children?
She tells us, "Early intervention is critical. Do not underestimate what occupational therapy can do for your child. I have seen many young adults who do not possess the necessary fine motor skills which are so critical in ensuring their successful integration into gainful employment."
"I often share with parents my shoe string story. When Ryan started his OT sessions, the first thing she told me was - change his velcro shoes to shoes with shoe string. If possible, get him more button shirts. I didn't really appreciate it then, but in his late teens, I realised its importance. More so now."
"Tying of the shoe string is actually building into his daily routine basic OT training - pincer grip, left-right hand coordination, eye-hand coordination. Similarly for buttoning of shirt."
"Look for opportunities in daily routine to help your child develop life skills. Don't look for perfection from the start, help him get the process right, perfecting the skill will come over time."
"Ryan is an able member of the family. He helps make each family member's bed. During weekends, he helps me prepare the meals for the family - he does cutting and washing up."
"If he is a helpful and contributing member of the family, at least when his siblings take care of him later, he will be able to contribute to the family and not be a source of burden."
"Acceptance of your child's condition is crucial to helping him. Many parents still struggle with accepting their child's condition and hence delay getting the much needed help for him."
"We are the only bridge to the outside world for our child. If we cannot accept him, who can he depend on?"
Thank you, Soek Ying for sharing your journey with us. We are sure your story will inspire and empower parents of special needs children to aim high, and look beyond their disabilities.