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How Do Special Needs Caregivers Survive and Thrive?

How Do Special Needs Caregivers Survive and Thrive?

Caregiver support groups play a critical role for special needs caregivers by providing us with the networks and resources we need. Every group was set up by a founder (or group of founders) who put in much time, heart and soul into creating safe spaces for fellow caregivers to converse.

When Siti Zulaiha’s son Nafiz was first diagnosed with autism in 2010, she was working as a nurse in an international school where her colleagues helped her with useful materials on autism. In addition, she also had prior experience as a Head Nurse in a residential home for the special needs. Her skills, experience and networks enabled her to access resources to help Nafiz.

Siti looked around for caregiver support groups, but could not find any specifically for Muslims, and wondered where all the Muslim voices were. After she decided to start a private Singapore Muslim Autism Support Group for Muslim caregivers whose children had autism, more Muslim caregivers got in touch with her via word of mouth to join the group. 

She realised that many Muslim caregivers hid their child’s condition from the public (and even from other family members), with no one to turn to. It was only because she had started a private group, that these caregivers emerged from their place of loneliness. 

With a safe space to share their thoughts and feelings with other caregivers, the Singapore Muslim Autism Support Group has since grown to 300 members. Siti also decided to start a public Facebook group for Muslim caregivers looking after dependents with any type of special needs which now has over a thousand members.

As the groups primarily focus on emotional support and personal sharing, caregivers often reveal not only their concerns, but also feel confident enough to share their successes.

For example, there was a thread where caregivers shared how they used affordable DIY tricks to transform their wall, room or even entire house to accommodate the learning needs of their special needs dependent, resembling a colourful therapy centre or indoor playground.

In the caregiver support groups, caregivers exchanged tips on many topics, such as what courses to take and how to handle issues like toilet training.

    

Siti also shared an amazing  testimonial of a mum who could not speak English as she only had a Primary Five education. Through diligently learning English together with her special needs son as he progressed through his education, this mum even decided to set up her own salon!

With Siti’s support groups as two of various special needs support groups in Singapore, caregivers have more avenues to seek emotional support and learn from one another to thrive.

About Siti Zulaiha, Singapore Muslim Special Needs Support Group, and Singapore Muslim Autism Support Group:

Siti Zulaiha is a special mum to four boys. Her third boy, Nafiz, was diagnosed with autism in 2010. Besides setting up the two caregiver support groups mentioned in this article, she actively writes to MPs to lobby for caregivers and their dependents to have better access to services, such as reducing the waiting list for EIPIC, and helping special needs children transition better after pre-school.

She currently runs two support groups:

    • Singapore Muslim Special Needs Support Group: a Facebook group for Muslims with special needs dependents
    • Singapore Muslim Autism Support Group: a private Facebook group for Muslims with autistic dependents

 

To be updated on CaringSG’s latest events and join your preferred caregiver support groups in our CaringSG Alliance Network (CAN), sign up as a CaringSG member and let us know your preference!

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Bringing Hope at MIJ Hub

Featured photo: Mohammad Ali Dawood and Faraliza Zainal at MIJ Hub’s 3D printing station (Photo courtesy of MIJ Hub)

Bringing Hope at MIJ Hub

Featured photo: Mohammad Ali Dawood and Faraliza Zainal at MIJ Hub’s 3D printing station (Photo courtesy of MIJ Hub)

Located on the third and fourth storeys of a commercial building at 168 Changi Road, MIJ (My Inspiring Journey) Hub Ltd is a cumulation of sacrifice and hard work by Faraliza Zainal and her husband, Mohammad Ali Dawood.

 

From left: Mohammad Ali Dawood, Faraliza Zainal, and their son, Ashraf (Photo courtesy of MIJ Hub)

It began when their son, Ashraf, was diagnosed with a rare disease, tuberous sclerosis, when he was just 18 months, and suffered from epilectic attacks as he grew older till today. When he was three, he was diagnosed with autism and sensory processing disorder, which means the brain has trouble receiving and responding to information that comes in through the senses, and at one time, he wouldn’t stop eating until he vomited as he couldn’t feel that he was full.

He struggled with meltdowns and was bullied in Primary 3. One day, some classmates threw a bucket of water over him, which gave him so much trauma he had to crawl back into class by the back door. His parents then decided to transfer him to a private school, followed by Pathlight School where he took his PSLE.

Although he was able to move on to vocational training, he was more keen to do more studies that relate to faith.

In 2010, Faraliza took a leap of faith to quit her job and become a special needs educator, taking up short courses on behaviour management, alternative therapy, and movement therapy to help her son, Ashraf, continue his education. She and her husband even sold their private property to raise funds to start a school for him and other special needs kids.

While looking for a classroom, she and her husband encountered numerous rejections until Sultan Mosque agreed to let MIJ have a space, where they started MIJ Hub with 15 students. Today, MIJ Hub now serves almost 300 individuals with special needs across three centres.

With MIJ Hub and the launch of Ashraf’s Cafe in 2018 and MoAsh in 2020, Ashraf has bloomed into a young man who has not only found the balance he needed in his education, but also thrives in a job with an environment that is inclusive of his needs.

Special needs employees at Ashraf’s Cafe serve customers a variety of local and western food, cakes, pastries and drinks
How does MIJ Hub create a welcoming space for students?

Taking one example, the MIJ Hub at Changi Road has been purposefully furnished to cater to students with special needs from various backgrounds.

On the same level as the preschool and student care, MIJ Hub has carved out space for a cosy library, and an even bigger space for a gym fitted with a rock-climbing wall, trampoline and various gym equipment.

MIJ Hub’s gym is kitted with a rock wall
Padding ensures children play safely, with natural lighting coming in from the windows
An MIJ student and parent participating in a bonding workshop conducted by Faraliza at the MIJ’s gym (Photo courtesy of MIJ Hub)

On a weekly basis since 2016, Evolve MMA has volunteered to conduct fun fit programs for MIJ’s students. MIJ also runs paid art therapy and expressive classes for adult students conducted by Acting Up as part of the adult programs.

Faraliza also meets her teachers on a monthly basis to discuss each and every single student, to understand their challenges and brainstorm how to help the student as a team. 

At the top level, MIJ Hub runs adult classes, with stations for different skill sets neatly spaced out for practice and also for MIJ’s employees with special needs to complete their tasks.

Step by step recipes are provided for students to follow when making corporate gifts
An MIJ student making a corporate gift following the step-by-step recipe (Photo courtesy of MIJ Hub)
Top International Holding donated a 3D printer for MIJ Hub students to create their own 3D prints
Students learn basic housekeeping skills, along with other employability skills

MIJ Hub has branched out into complementary service offerings, such as:


INSPO by Ashraf’s Cafe: This brand provides individual and corporate customers with products and services which are created by employees with special needs who require moderate to low needs and are unable to fit in the open employment market.

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Faraliza showcases a popular product from Inspo - unpitted organic dates (kurma)

Work Readiness Adult Programme (WRAP): WRAP prepares students with learning differences for job readiness and jobs that they are capable of doing.

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Standing, from left: Mohammad Ali Dawood with Mayor Fahmi Aliman at MIJ Hub’s showcase of its Work Readiness Adult Program (WRAP). Photo courtesy of MIJ Hub.
  • Bridging Program: This program provides an appropriate bridge to meet the various needs of young learners with learning differences, to ease their transition into the primary level.

Faraliza’s hope for the future is for MIJ Hub to attain ECDA licensing, so that caregivers are able to obtain subsidies for their children’s monthly fees. Currently, MIJ Hub charges fees which are below their operating costs, and depends heavily on donations to fund the balance.

To support fellow special needs caregivers with emotional support, Faraliza has signed up with CaringSG to be trained as a volunteer CAREbuddy. She encourages fellow caregivers like her to take good care of ourselves; physically, mentally, emotionally and spiritually, in order to take care of others.  With positive well-being, we can continue to feel a sense of purpose and lead a fulfilling and meaningful life.

About MIJ Hub

MIJ Hub is a non-profit organisation that provides school readiness, student care, intervention and enrichment programs plus employment opportunities for individuals with learning differences or special care (e.g. Autism, ADHD, Cerebral Palsy, Down Syndrome and Developmental Delay) ranging from 4 to 30 years old. The school now serves almost 300 individuals via 6 different Special Education programs provided at 3 centres located across Singapore – Changi Road, Jurong, and Woodlands.

To be updated on CaringSG’s latest events and join your preferred caregiver support groups in our CaringSG Alliance Network (CAN), sign up as a CaringSG member and let us know your preference!

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The Auditor Who Became a Professional Kaypoh (busybody)

The Auditor Who Became a Professional Kaypoh (busybody)

“Do you know what my nickname is?” said Edward Chan, a special dad to two autistic girls.

“I’m known as ‘Kaypoh’ (busybody),” he proudly shared over coffee with CaringSG.

Quitting his job to save his daughter

Edward was once an internal auditor, flying to various countries for auditing stints that often stretched for at least a month. But this meant that he had little time to look after his two daughters (Yan Ling, 13, and Yan Yun, 10, this year) who are both studying in Pathlight.

Several years ago, when Yan Ling was in Primary Two, she really missed her dad especially during his long overseas trips. She was also struggling with academics and felt so stuck that one day, she just decided to sleep during her entire Semestral Assessment 1 (aka mid-year examinations), hoping this would draw her dad’s attention towards her.

It worked, and Edward quit his job to take on a local role which he thought would allow him to spend more time with her. However her progress was not consistent and his new job required him to burn weekends to clear projects. 

Taking advice from the psychologist and social worker that the parent who is closer to Yan Ling should spend more time with her, Edward decided to trade his full time job to become a Private Hire Driver so he had more flexibility.

During her Primary Three school holidays until today, he invested his newfound time to build up a routine and work closely with Yan Ling on improving the gaps she struggled with. She has progressed through her Foundation years and is taking PSLE this year.

Edward also finds time to volunteer with CASPER, organising talks for special needs families and participating in initiatives with other caregiver support groups, including joining CaringSG’s CAREconnect volunteer team, earning him the nickname of ‘Kaypoh’, or someone who is a busybody.

Finding that he isn’t alone

Although it seems like Edward has always been actively volunteering, it wasn’t always this way.

When Yan Ling was first diagnosed with autism, he went through a period of denial.

“Denial will be there, it’s just how long only. Don’t blame yourself, and be frank with your family. Family support is very important,” he advised caregivers who have just learnt their dependent has special needs. He and Beverly started their special needs journey without any support group at first, relying on his mother to help send Yan Ling to EIPIC intervention during her preschool years.

In 2013, a parent whom he knew asked him if he was attending a CASPER forum. Although he had heard about CASPER, he did not apply to join until this parent mentioned the forum.

“CASPER was set up in 2011 by special needs parents who were the first few batches to attend KKH’s Signpost course. They got the support of KKH’s Department of Child Development to start this support group, provide a venue, and speakers for talks for special needs parents,” Edward said.

When he and Beverly registered and attended the forum, they realised they were not alone.

Edward greatly appreciated that the CASPER talks he attended also came with a parent Care and Share session, which he said helped him a lot especially hearing from other special needs parents how they lived their lives as caregivers.

In 2013, he was invited to join the core team, who wanted to bring more topics other than school readiness to special needs parents. Besides inviting several speakers outside KKH, CASPER connected with SG Enable in 2015. This partnership helped CASPER to link up with The Law Society of Singapore, which gave a pro bono talk on wills for caregivers.

CASPER continues to organise forums and share resources via its secret Facebook group. 

About CASPER

CASPER, a secret Facebook group, was created as a safe haven for all special needs caregivers to share information and thoughts. It works with the KKH Department of Child Development and other partners to run talks and activities for special needs children and their caregivers. 

About CAREconnect

Edward, who volunteers with CASPER, has also joined CaringSG as a CAREconnect lead. 

With his help, special needs caregivers can participate in our CAREconnect program jointly organised by CaringSG’s caregiver and professional volunteers, which include: 

  • CAREconnect webinars, forums and respite events build your caregiving knowledge, skills and personal resilience. 
  • CAREconnect family activities help you bond with your child and other special needs families. 
  • CAREconnect social and inclusive activities connect you with other caregivers and your neighbourhood.

To be updated on CaringSG’s latest events and join your preferred caregiver support groups in our CaringSG Alliance Network (CAN), sign up as a CaringSG member and let us know your preference!

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I wish…if I could turn back the clock…

I wish...if I could turn back the clock...

“I wish…if I could turn back the clock, I would be more accepting of my son’s condition, and not push him and myself the way I did, with so much therapy and extreme desperation on my part, to see him improve….”

“I wish…if I could turn back the clock, one of the things I would like to do is to spend more quality time coaching and involving my son with real life daily activities rather than rushing around to fill him up with various therapy and classes.”

“I wish…if I could turn back the clock, I would start talking to more parents and be open to more options and activities for my children. Rather than keeping to myself.”

“I wish…if I could turn back the clock, I would give my son more hugs, more love, more understanding. I would make him feel that he is unconditionally accepted and that he is a blessing.”

“I wish…if I could turn back the clock, I would stop working and be with my boy.”

“I wish…if I could turn back the clock, I’d be more relaxed with my son, bringing him out to play a lot more than being cooped up at home feeling overwhelmed. I would teach him life skills instead of trying to meet academic demands, journey with other SN mums more, and pray more.  Jia you everyone!”

“I wish…if I could turn back the clock ,I would spend a lot more time teaching my daughter life skills that can lead to self care independence, like bathing, washing clothes, folding clothes, general cleaning (if her abilities can match up) rather than on academic programs like reading and writing skills which she still could not. Regardless what program your child is in, having a joyful time interacting purposefully with your child is what matters + caregiver’s self care. (My daughter has moderate-severe autism, non-verbal with a bit of hypotonicity)”

“I wish…if I could turn back the clock, I would let her start taking up household responsibilities at a much younger age at 5 years old. Let her wash her plastic cups, plates etc. I let her do her laundry using a washing machine at age 10. Believe your child can start early even though it may be messy a bit. They can do it. Just slow and not perfect.”

“I wish…if I could turn back the clock, I wish I had started earlier with XX but instead he was given so much entitlement and we were putting him into many classes, performances to occupy and engage him. In some ways it may be good but some ways may not be. It would be better if I could slow down and understand, support and coach him on a daily basis to help him achieve the necessary skills. We have lost some years but there is no looking back. This pandemic clearly helped us realise many areas to improve.”

If you could turn back the clock, what advice would you give your younger self?

Special thanks to Hope for the Journey (HOJ) for the sharing. Featured photo from pxhere.

Previous post: Why did Dr Lim Hong Huay decide to start CaringSG? Read more here.

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I Believe

Caption with my kids and special needs families at purple parade in 2018

I Believe

With my kids and special needs families at purple parade in 2018

“This is going to be really tough. What makes you think you all can pull this (CaringSG and project 3i) through?” The icy question from a social service sector veteran pierced my soul as I searched deep in my heart for an answer……one that I will not be ashamed to give to my maker one day.

I believe in Him who called me……who has and will make all things beautiful in His time and for His name.

I believe in my fellow caregivers……who faithfully journeys with me and many others for years, even when it was in the unearthly hours when I was at my lowest.

I believe in my fellow colleagues and allies, who like me, have entered the disability sector with a heart of passion, and despite our myriad battle scars, have stayed on and kept going on, come what may.

CaringSG will realise our vision of “One Life. One Family. One community.” because we value every caregiver and child’s life as a unique whole irrespective of our differences. We believe in supporting every family to be healthy and happy throughout life course. We believe in a united special needs community in an inclusive Singapore.

Let’s join hands and hold each other up in this caregiving journey. The birthing is difficult. We will overcome. The building is arduous. We will conquer. The harvest is plentiful. We will labour joyfully. Through blood, sweat and tears, CaringSG will arise triumphantly. Not from pride in numbers but humility in service.

10 years on, 20 years on, I know I will look back and say, “ I am so thankful I believed.”

This post was written by Dr Lim Hong Huay, CaringSG Board Chair and Project 3i Lead, on why she founded CaringSG.

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