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How Can I Create My Own Caregiver Support Group?

Vivi Xie

How Can I Create My Own Caregiver Support Group?

Vivi Xie

As we caregivers journey along with our special needs dependents, some of us may wish to start our own caregiver support group catering to our specific needs. However, some of us may not have much experience starting or running a support group. To empower caregivers who wish to start your own group, CaringSG interviewed Vivi Xie, a mother to a son diagnosed with autism.

Vivi did not know much about autism until her son was diagnosed when he was in preschool. She remembered he could call her ‘Mama’ when he was one year old, but stopped speaking after that. At two and a half years old, he still couldn’t speak, and would engage in repetitive actions. After speaking to her husband, they took their son for an assessment which confirmed he had autism.

He managed to get into an EIPIC Centre a few months later and received the intervention he needed. However, Vivi still felt lost as she was unable to find the information she was looking for in the vast sea of the internet. With a few friends who were special needs caregivers, she started the ASD, ADHD and ADD Supports Group Singapore on Facebook in 2017. It has grown to over 600 members today.

These are some tips we learnt from her about starting your own caregiver support group.

1. Find like-minded people to start the group with

Vivi started her group with friends who were special needs caregivers after learning they had similar issues with not knowing where to find the right information suitable for their own situation. They decided to pool their knowledge and resources in their ASD, ADHD and ADD Supports Group Singapore, and take turns moderating the group.

A reminder posted by Vivi in her group
A reminder posted by Vivi in her group

2. Invite fellow caregivers to join

When Vivi started her group, she also took a step out to share about her group with her friends, or when the opportunity arose. As word of mouth spread that her group existed, more members joined when they heard from their networks that there was a group for caregivers to learn more about ASD, ADHD and ADD.

Vivi shared that she realised there were many ‘invisible caregivers’, caregivers who journeyed alone without any support group or sharing about their dependent’s condition with anyone other than their family. She was glad that some of these caregivers heard about her group and joined to find the support they needed.

3. Set ground rules and moderate consistently

In ASD, ADHD and ADD Supports Group Singapore, topics must be related to the three special needs conditions. Vivi encourages open sharing in a pinned post that says “I would like to encourage all members here to share some of their good ideas or problems here in the way to support our beloved ASD, ADHD or ADD family member or self, so other will also have something to learn or might share their own experiences which might help yourself too.”

Her group accepts marketing posts by businesses who cater to the three special needs conditions as she thinks that caregivers should have more information and choices to mull over, instead of not knowing what help is out there. She also encourages members to be independent by doing their own checks and ‘homework’ on the marketing posts.

4. Focus on what benefits your members

When Vivi started the support group with her friends, she just wanted to have a space for fellow caregivers to learn from and encourage each other. She shares stories, visuals, poems, webinars, resources and more to benefit members, and gently welcomes members to open up about their experiences too.

An example of a visual that was shared with members
An example of a visual that was shared with members

From a group initially comprising of special needs caregivers with school-going children, ASD, ADHD and ADD Supports Group Singapore now has members interested in topics ranging for special needs at all ages. She elaborated there was even a lawyer diagnosed with ADHD to joined to give back to the community and share his own experience managing ADHD.

5. Anyone can start a support group

You don’t need to be very outspoken or famous to start a support group. Just be yourself, find a few like-minded people, and create the solutions you wish you had as a special needs caregiver.

A quote that Vivi shared in her group
A quote that Vivi shared in her group

About ASD, ADHD and ADD Supports Group Singapore

ASD, ADHD and ADD Supports Group Singapore was set up in 2017 by Vivi Xie and several other special needs caregivers. It welcomes caregivers and people diagnosed with ASD, ADHD and ADD, of all ages. Members can learn from the experiences of fellow members, and exchange information about online resources, networks, services, talks, and more. Professionals who wish to share services relevant to these conditions are welcome to share in the group as well.

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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Advice Special Needs Caregivers Need to Hear

RDSS

Advice Special Needs Caregivers Need to Hear

RDSS

It can be too easy for caregivers to lose themselves in the daily tasks of caregiving. This may cause us to experience issues such as burn out, poor health and relationships with our family members.

Instead of waiting till the last minute to deal with these issues, how can we prevent and pre-empt them? How can we prepare ourselves for better quality lives as we go about caregiving for our special needs dependents?

CaringSG caught up with Kenneth Mah, a father who quit his job to care for Chloe, his daughter, in 2010, after she was diagnosed with Pompe disease (an inherited neuromuscular disorder that causes progressive muscle weakness) at seven months old. He is her main caregiver who looks after and coordinates her daily routine, education, hospital visits, and therapies.

RDSS
Caregiver Kenneth Mah and his daughter Chloe (Photo courtesy of RDSS)

In 2011, Kenneth and his wife, Patricia, founded the Rare Disorders Society (Singapore) or RDSS to create awareness about various life-threatening rare diseases. RDSS has grown from three to 130 families and provides financial, emotional and psychosocial support to these families. To acknowledge his caregiving efforts, he was awarded the Exemplary Caregiver Award 2019 by Club Rainbow.

Kenneth hopes fellow special needs caregivers will hear this advice which have supported his own journey as a caregiver over the years.

 

1. Work with the strengths of your family members

“Each person has their strengths. We cannot expect wife and husband to be equally involved in the same way.” – Kenneth Mah

Not everyone can do every task equally well. Kenneth advises caregivers, fathers especially, to be honest with themselves regarding the strengths and weaknesses they and family members have.

He openly shared that he is dyslexic. Hence although reading is not his forte, he is better at remembering pictures and doing hands-on tasks. As Patricia is better with words and is doing well in her career, she takes care of the family’s finances and is helping him to oversee the running of RDSS.

This is one reason why he decided that to quit his job to be a stay-at-home dad to Chloe. Besides familiarising himself with first aid and CPR, he is a MacGyver of sorts, improvising for her daily medical routine as she grew older and her needs evolved. He trialled and invented new equipment using everyday items to fulfil her medical needs when there was no reported precedent or example to refer to.

With both parents to look up to, Chloe has bloomed. She has learnt how to communicate using a communication app (Touch Chat) installed in iPad and said her first words ‘Papa’ at eight years old. Her younger brother, Cayden, has also grown to become an empathetic boy who looks out for classmates who need help at school.

 

2. Remember to self-care

Kenneth makes plans where possible to have some time for self-care. He arranges sessions with friends for golf, badminton and makan sessions, during periods which Chloe is looked after in school or by the helper.

He advises caregivers to:

  • Embrace the changes
  • Prioritise basic self-care – set ‘me time’, ‘family time’ and ‘we time’ with friends.
  • Be kind to yourself and set short term self-care goals
  • Engage in meaningful and healthy activities
  • Have a personal crisis plan – keep a circle of confidantes
  • Positive thinking – there are more solutions than problems

 

3. Look after other caregivers too

In RDSS, caregivers support each other through the ups and downs. When he was caregiving for Chloe in ICU, several caregivers stopped by the hospital to spend time with him, go for meals, listen to him and provide emotional support.

RDSS
Kenneth sharing about RDSS at a briefing for Let's Take A Walk event in 2019, which RDSS was an adopted beneficiary of (Photo courtesy of RDSS)

In the same spirit, Kenneth shared that although some children in his RDSS group have passed away, he reassures their caregivers that their families are still part of RDSS. Some of these caregivers have since taken a step forward to volunteer with RDSS to care for other caregivers.

This is the spirit of servant leadership and solidarity that Kenneth hopes will multiply in Singapore, where the needs of the community come first and caregivers take care of one another.

 

4. Be sensitive to the feelings of other caregivers

In the past, Kenneth had encountered an incidence where a parent pulled his child out of the class that Chloe was in, because he had the mistaken impression that Chloe was dragging down his child in terms of academics due to her condition, although this was not the case.

He is empathetic that caregivers should be considerate of one another and be mindful not to look down on other kids with special needs.

As a caregiver, he also experienced conflicting emotions of relief, self-doubt and guilt of keeping Chloe alive, and the perpetual stress that she could die at any moment. These feelings were exacerbated during one traumatic near-death episode in 2018 when Chloe had a cardiac arrest and he attempted to revive her by performing CPR, while fearing she would have permanent brain damage and needed to be hooked on life support. She recovered with no apparent damage.

Kenneth hopes the public would be mindful of caregivers’ feelings as well, sharing in a TODAY article that he faced negative comments from people and keyboard warriors who said Chloe has ‘no hope’ and criticised him and his wife for trying to keep their child alive.

To help improve understanding and sensitivity towards caregivers of special needs dependents, Kenneth is helping CaringSG with CAREkaki training of grassroot leaders and volunteers to know what to do when they come across a special needs family.

As caregivers could also be siblings, RDSS supported the launch of CaringSG’s first webinar: Special Siblings – Just As Special, where invited speakers discussed the experience of growing up with a sibling with special needs and later being involved in their care, and what parents can do to care for all their children while raising a special needs child.

About Rare Disorders Society (Singapore) or RDSS

RDSS is a charity initiated by parents of children with LSD (Lysosomal Storage Disorder). Established in 2011, it aims to raise awareness on various life-threatening rare diseases. The society offers financial support through various supports such as Medical Intervention Support, Power For Life and Home-based learning and therapy support to over 100 beneficiary families with rare diseases in Singapore.

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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We Are Stronger Together

We are Stronger Together

Frankie and Tina family

We are special parents too. Just like some of you, my husband Frankie and I have had our challenges in handling our second son who was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) and Dyslexia when he was 6 years old. He was also subsequently diagnosed with Autism Spectrum Disorder at age 10.

We believe that building our marriage on mutual understanding and making effort in communicating honestly has helped us cope as special parents. Despite differences in opinions and parenting styles, we make time to talk through things often. We share our own feelings and struggles regarding the situation, while we work at improving things together. Being united as a couple and helping the family synergize together to meet each other’s needs helps us overcome the challenges and demands of special parenting.

Parents are indeed the best people to help create the environment for our special children to thrive. It’s important also for parents to find ways to connect with other parents who are going through a similar journey. The natural affinity borne through the familiarity of similar family struggles and experiences creates a positive identification that helps you feel less alone in your journey.  

In special families, it often becomes necessary that one parent stays home to help manage the special needs child and the home. Many families have found that the financial sacrifices are small in comparison to having one parent more present to manage the home full time.

In our case, we are glad that we chose for me to be a stay-home mum to all our 3 children even before our second child’s special needs was diagnosed. This helped us attend to the issues and be the main caregivers from day one. Our children have also come to appreciate this and know that we prioritise them above our own careers.

Special parenting is a transformational journey for us as parents. We need to constantly learn, re-learn, strategise and be creative in problem solving. Flexibility and humility are also so important. When you think of it with a growth mindset, you can find the gems in the journey and appreciate the learning that it brings to the whole family.

About Dr Frankie Tan and Tina Tan

Frankie and Tina are parents of 3 boys. Their second son has ADHD, Dyslexia and ASD, and their youngest son is also currently struggling with severe anxiety issues. Tina is a stay-home mum while Frankie holds a Ph.D. in Sport Science & Physiology and works at the Singapore Sport Institute. Both are active volunteers with various community groups like SPARK, Schools, SAFRA, Dads for Life, and in their church. Being active volunteers have truly enriched their lives as they reach out and support other families in similar situations as them.

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Removing the Obstacles To Learning

Removing the Obstacles To Learning

Christina 1

When Christina’s younger daughter, Edena (then 6), was diagnosed with dyslexia in 2009, she was determined to look for an intervention programme that could help her catch up with her reading age within the shortest time possible. She and her husband also decided to defer Edena’s Primary 1, as they saw how low her confidence was. They wanted to do what they could to give her the necessary interventions before the demands of the mainstream curriculum overwhelmed her.

Christina found the solution in the Davis Dyslexia Correction Programme (DDCP), a holistic approach to correcting dyslexia developed by Ronald D. Davis. He is also author of the books, The Gift of Dyslexia and The Gift of Learning. Being autistic and dyslexic himself, Ron figured out how to overcome his severe dyslexia and taught himself to finally read and enjoy a book without struggling at the age of 38. Ron subsequently opened a centre in California in 1982 to help children and adults overcome their learning difficulties.

The DDCP is an individualised, one-to-one correction programme given on an intensive schedule over 30 hours by a Davis Facilitator. It adopts a strength based approach by working with what a dyslexic can do, as opposed to what they cannot. Christina witnessed Edena’s transformation, going from hardly recognizing most words taught to being able to read a short paragraph by the end of the programme. This has not only met but exceeded Christina’s expectations.

For the next one year, Christina continued working with Edena using the Davis tools and techniques. By the time Edena returned to school a year later, she had a new found confidence. Now 17, Edena is pursuing her studies in junior college. This would not have been possible if not for the timely intervention and support from family, teachers and friends.

The journey from suspecting that Edena might have some learning difficulties, to seeking out professionals for advice, to researching and selecting the intervention programme, had been a daunting but enriching experience. While Christina has the desire to help other parents in similar situations, it is her conviction that to be in a position to provide guidance and support to other parents, she needs to have gone through the experience, successfully remediated the problem and be sufficiently well versed with the subject matter.

Hence she decided to dive into special needs education, first completing a Diploma in Disability Studies and later getting trained as a Davis Facilitator. Christina subsequently set up a Dyslexia Group on Facebook, with the mission to create more awareness about dyslexia and to help parents navigate their journey.

Contrary to what most people think, Christina shares that dyslexia is not a complexity but a combination of a few factors that can be tackled step by step. She explains that the symptoms of dyslexia are actually symptoms of disorientation. Disorientation is a state of mind where mental perceptions are not in agreement (i.e. distorted) with the true facts and conditions in the environment. When a dyslexic is sufficiently confused, he will react by disorientating spontaneously, thereby leading to perceptual distortion which results in mistakes made when reading, spelling or writing. Dyslexics therefore need a way to ‘turn off’ the disorientation at will.

But what caused the confusion? Basically, when a dyslexic encounters certain symbols, and all words are symbols (as are alphabet, punctuation marks, speech sounds, math symbols and numerals), they get confused by those symbols whose meaning they cannot picture. Dyslexics tend to think primarily in pictures, as opposed to thinking in words. Because of the way they think, whenever they come across symbols whose meaning they cannot picture, confusion sets in and once that threshold for confusion is reached, they will disorientate and mentally move around to ‘see’ from different viewpoints and angles in order to figure out what that symbol is.

To illustrate, take for example a simple math question – subtract 20 from 100. The majority of children can easily tackle this question, but not so straightforward to a dyslexic. High frequency or common sight words such as ‘from’, ‘by’, ‘the’, ‘if’, etc often caused confusion for dyslexics as they cannot picture the meaning of these words. A child may be able to recognise and pronounce the word ‘from’, but if he does not know the meaning, he would not know how to begin solving the math problem.

After much drilling and repetition to no avail to help the child understand the question, the child is then told by a well-meaning parent or tutor that whenever he sees such questions, he just needs to minus the smaller number with the bigger number. In so doing, the child is taught rote learning, rather than have real understanding or true mastery of the subject.

To resolve the confusion with the word ‘from’, the child needs to master the word in all its three parts ie what the word means (a picture representing the concept/idea of the meaning), what it looks like (the spelling of the word) and how it sounds (the pronunciation of the word). Once the child masters the word ‘from’, which means ‘starting with, beginning at’, the child can now think with the words in the question. So subtract 20 from 100 means he has to start with, begin at (ie from) 100, and then take away 20. Visually, he would be able to put 100 down on paper, followed by the minus sign and 20 below 100 and then do his workings to get to the answer.

There are 219 high frequency words that typically trigger disorientation for a dyslexic. These non-picture words make up about 75% of words on a page. By mastering these trigger words, the source of confusion will be eliminated and they will not trigger disorientation. Therefore, when we remove the reason why a problem exists, the problem ceases to exist!

Examples of word mastery done by a dyslexic 6-year-old using clay (Photo courtesy of Christina Tan)
In addition to her role as a Davis Facilitator and founder of the Dyslexia Group, Christina is also one of CaringSG’s CAREconnect champions who support fellow special needs caregivers. She has this to say to caregivers of children with dyslexia: “Dyslexia is a learning difference, not lack of intelligence. To receive a dyslexia diagnosis, the person’s IQ needs to be at least in the normal range. Ron himself was initially tested to have low IQ and was labelled as ‘uneducatably mentally retarded’ at the age of 12, but was later discovered to have an extremely high IQ of 137. People do not outgrow dyslexia, so do not wait to get help for your children. The earlier you identify the issues, the sooner your child can receive help. With the right intervention, a dyslexic can overcome their challenges and excel in life. No matter which stage of the journey you are at now, if you are looking for guidance or support, please do not hesitate to reach out to me.”

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From One Special Dad To Another

From One Special Dad To Another

I’m a special dad. For 14 years, I’ve walked through the journey you’re experiencing now. 

The thing is that no one really tells you what to do, and old school men like me don’t really ask because we feel we have the responsibility of being the provider of the family come what may. 

You may be starting to accept your child’s diagnosis, or searching for elusive answers with Google. But nothing can help you as much as being with other special dads, knowing you’re not the only one trying to make sense of the turbulence ahead. 

As one special dad to another, this is what I think you should prepare for. 

1. Planning Finances 

Having a special needs child can mean redesigning our whole life for therapy schedules, doctor visits, tests and other related appointments. 

Besides the financial strain due to these extra costs, some special dads (or our wives) have to give up career progression or quit altogether to accompany our child to appointments. 

Suddenly we have a double whammy — higher expenses and lower household income. 

In my earlier years, I had held fast to some simple accounting principles of ensuring I invested and diversified the money I earned. I left the purchase of cars, clothing and holidays to a later date because I had an extended family that impressed upon me on what I needed to do when I grew up.        

Today we have the internet, financial consultants, and even government portals such as MoneySense to advise the best for our needs at different stages of our lives. I would encourage you to reach out and use these avenues so that we can educate ourselves enough to be able to help our families. 

2. Managing wife’s expectations

There will be days where your relationship with your wife may become strained due to the stress of caring for your special needs child. 

Not everything has to be an equal game. Everyone has strengths at different points of time. 

Look at things objectively. If your wife is in a better position to put bread on the table, could you step up and be a hands-on father to your special needs child? This is what I decided to do five years ago when my son grew bigger and needed a more present father.

Our marriage is still a “work in progress”. We deal with challenges and each other’s sensitivities the best we can. There are so many permutations to getting it to work and there is no “best” or “logical process” to make it work. Every day presents new challenges and opportunities. 

I’ve learned that no matter how angry, sad, disappointed or let down I feel, I don’t need to take it to heart, and I try my best to be empathic. Even this may not work all the time, so I then take it as life’s journey. We can still choose to see how we can make things work better and learn from the experience. 

This makes for a happier “me”, and a happier “me” can then back down, smile and not let the situation escalate further unnecessarily.

3. Do I have to solve everything?

We men have an innate habit of going into problem-solving mode. But special needs isn’t something you can cure away. 

That said, there are some things that you can solve, such as planning ahead, creating a safe space for your family to walk this journey together, and spending time on self-care for yourself.

For everything else that is out of your hands, learn how to adjust and outsource to experts. For example, Centre For Fathering runs programmes for fathers on parenting and adventure camps to promote bonding with your child.

4. Be prepared to start from ground zero

As we learn from scratch how to become a father when our first child is born, we also start from ground zero when we first realise we are special needs dads.

Centre For Fathering has a growing community of special needs dads who have walked in your shoes and know what it’s like. 

Find your tribe and take it step by step.

Anand 3

5. Making the best of what we have

When life throws us lemons, make lemonade. 

Being a special dad ironically came with blessing to me. I discovered I have so many untapped skills as a father and that our special child brings out in us. 

In my years of being a father, I feel I was accorded the privilege of being a father to a special needs child simply because my son has made me a more resilient, patient, emotionally connected father. This is something I wasn’t always (and to a large degree) felt capable of doing.

Anand 4

About Anand Lal and the Centre For Fathering’s Special Dads Group:

Anand Lal is a special dad to a fourteen-year old son with intellectual disabilities and apraxia. He quit his full-time job five years ago to spend more time with his son, such as taking him on adventure trips and indulging in swimming, his favourite activity. Anand has also upgraded his skills to become an Inclusive and Neuro Diverse Water Safety and Swimming Coach, and actively volunteers at the Centre For Fathering’s Special Dads Group.

Anand is also a CaringSG CAREconnect champion and is the Head of CAREbuddy.

All photos courtesy of Anand Lal.

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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