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CaringSG Feb and Mar 2023 Needs Assessment Events @ Kampong Glam

CaringSG Feb and Mar 2023 Needs Assessment Events @ Kampong Glam

In order to check on the well-being of caregivers (such as financial, health and social), CaringSG conducted a needs assessment exercise for caregivers residing at Kampong Glam on 12 Feb and 18 Mar 2023.

                                                                             Kampong Glam CAREkakis and CaringSG preparing for the needs assessment

During the house visits, staff and volunteers also asked about the caregivers’ daily caregiving duties and whether they required any additional help as some of them might not be aware of the existing government schemes or avenues to seek help from.

A total of 23 families were engaged during the 2 dates (13 families in February and 10 families in March) and both outreach events were also supported by Enabling Lives Grant Initiative (funded by Tote Board and managed by SG Enable), Temasek Foundation, and Kampong Glam CCC.

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CaringSG is now an IPC

CaringSG is now an IPC
(Institution of a Public Character)

Dear friends, CaringSG is now an IPC (Institution of a Public Character).

Any donation over $100 will stand to receive 250% tax deductions.

Your generous support will go a long way in funding our programmes (CAREconnect, CAREbuddy, CAREwell) to support Caregivers of Persons with Disabilities.

Donate today at www.giving.sg/caringsg-limited/icare

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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手牵手, 向前走 Moving Forward Together – By Mr Edward Chan

手牵手, 向前走 Moving Forward Together – By Mr Edward Chan

Mr Edward Chan, (pictured above, forefront) is CaringSG’s Head of Corporate Services and a caregiver of two children with ASD.

This letter to CaringSG members was originally written in Mandarin. We have included the English translation below as well.

2022年刚过,2023年此时已经在高速前进. 回想过去两年所完成的工作,实在太不可思议了.

二〇二〇年十月, 一群特殊看护者在林方辉医生带领下成立了CaringSG (关护之心). 二〇二一年六月, CaringSG 获得了政府认证为慈善机构, 从而可以向公众认捐. 之前CaringSG 的 运营资金全靠种子资助者(seed funders)来支撑. 除此之外, CaringSG也开始了义工训练(CAREbuddy 与CAREkaki)为接下来工作与服务做准备。

在林医生的不屈不挠的努力下, CaringSG 的三个主要看护者服务, CAREconnect, CAREbuddy 和 CAREwell, 终于找到了资助机构. 有了资金, 每个服务的运做也开始加速, 也开始有新的成员加入了工作团队.

CAREconnect 在二〇二二年一月也开始在文礼区每月与基层人员为当地的特殊家庭与看护者主办活动. CAREconnect的目标是联系当地的特殊看护者, 一起来参加CAREconnect的活动, 让大家彼此认识而建立起互助网络. 同时也让看护者认识基层人员以便以后如需要帮助, 不至于茫然无措.

同年六年, 又添加了甘榜格南区. 主办这些活动并非易事, 期间又因为疫情加剧, 主办团队要确保大家遵守防疫条例,尤其有孩子参与的活动要加强消毒措施. 又因为看护者与其特殊孩子年纪大, 不便来参加活动, 团队就上门拜访. 面对许许多多的挑战, 感恩团队不言败的精神, 把这些困难一一克服了.

踏入二〇二三年, CAREconnect 又添加了直落布兰雅与南洋区. 义工训练正在进行中, 也与当地的基层正在筹备接下来的活动.

如果我说工作没压力, 那肯定是骗人的. 在无数崩溃想放弃的夜晚,一觉睡醒, 又在重生.这种前所未有的自愈能力, 是大家的鼓励与支持给我的力量.

我要感谢林方辉医生, Dr David Ang 与CaringSG Board of Directors 对我的信任, 让我全心全意的投入这份工作.

还有与我一起冲锋的CAREconnect 队友, Jeffrey, Elysia, Chris, Diana, Julia, Xin Ying, Ann Toh, Pei Cheng, Esther, Wendy, Rae, Lilian 以及CaringSG 大家庭; 文礼与甘榜格南的基层领袖们Corrine, Shanthi, Ronnie, Hong Kian, Jeanine 等等. 还有基层顾问Minister Desmond Lee 和Mayor Denise Phua.

感谢你们这一路来的鼓励与支持, 我才有信心与勇气走下去. 二〇二三, 展望CaringSG 再上一层楼, 继续为特殊看护者服务.

Even though 2022 has just passed, the pace for 2023 has already picked up quickly. It is amazing to look back on the work that CaringSG has accomplished in the past two years.

In October 2020, a group of special needs caregivers established CaringSG under the leadership and guidance of Dr Lim Hong Huay. During the initial phase, CaringSG’s operations were solely funded by seed funders. CaringSG was subsequently recognised as a registered charity status in June 2021 where we could receive donations from the public. At the same time, CaringSG also started its volunteer training programmes (CAREbuddy and CAREkaki) to prepare for future work and services.

Thanks to Dr Lim’s tireless efforts, CaringSG managed to secure funding from the Enabling Lives Initiatives (ELI) Grant by SG Enable & Tote Board, Temasek Foundation, and National Council of Social Service to jointly sponsor Project 3i (CAREconnect, CAREbuddy, and CAREwell). With the sponsorship from these funders coupled with the recruitment of new staff to manage Project 3i, the operations of each of these services began to take shape and flourish.

Since January 2022, CAREconnect also began collaborating with Boon Lay grassroots to host monthly activities for special needs caregivers and their families living in the constituency. The objective is to reach out to these caregivers, connect them to other caregivers, and form a support network in the process. These gatherings also allow caregivers to get acquainted with the grassroots so that they know where to seek assistance in the event they require any help in the future.

Another constituency, Kampong Glam, was added in June of the same year. As it was during the Covid-19 pandemic, organising monthly activities for the caregivers was no easy task. For example, the organising committee had to ensure that everyone complied strictly with the COVID-19 Safe Management Measures (SMMs) and stepped up disinfecting efforts, especially for those activities which involved children. In addition, as it was inconvenient for some of the elderly caregivers to attend the activities, the team conducted house calls to them personally. Despite the numerous challenges, the team persevered and managed to overcome all of them.

2023 has been a great start so far as CAREconnect has achieved another milestone with the partnership and support from another 2 constituencies – Telok Blangah and Nanyang. We are glad to announce that the volunteer training is currently underway, and we are also in the midst of discussing upcoming events with the respective local grassroots.

To be honest, the work we have done thus far was not stress-free. In fact, I want to confess that the thought of giving up has come across my mind many times. However, when I think of the encouragement and support that I have received from everyone, it spurs me to work even harder despite all the hardships.

As such, I would like to express my heartfelt thanks to Dr Lim Hong Huay, Dr David Ang, and the CaringSG Board of Directors for their trust in me and for allowing me the opportunity to devote myself and contribute my best to this work.

I would also like to thank my CAREconnect team-mates, Elysia, Jeffrey, Chris, Diana, Julia, Xin Ying, Ann Toh, Pei Cheng, Wendy, Rae, Lilian, and the entire CaringSG family, together with Boon Lay and Kampong Glam grassroots leaders such as Corrine, Shanthi, Ronnie, Hong Kian, and Jeanine. Last but not least, I would like to especially thank grassroots advisors, Minister Desmond Lee and Mayor Denise Phua for believing in CaringSG.

Once again, thank you to everyone who has encouraged and supported me in one way or another during this journey. Without you all, I would have lacked the confidence and courage to go on. With a brand new year ahead, I really look forward to taking CaringSG to the next level and continuing to serve the special caregivers community.

From Caregivers, By Caregivers, For Caregivers

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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Continue To Be Brave – By Board Member Dr Tan Jit Seng

Continue To Be Brave – By Board Member Dr Tan Jit Seng

Dear CaringSG Members,

I am a physician seeing Persons with Intellectual disabilities almost daily. I hear many sad and troubling stories and I also hear many inspiring stories of caregivers and individuals.

If it takes a village to raise a child, it will take the entire society to chip in and raise a special one!

Continue to be brave and share with us your highs and lows.

We go through the journey together and together we will be stronger and better!

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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Parents Are The Best Advocates – By CAREbuddy Debanjana Bhaumik

Parents Are The Best Advocates – By CAREbuddy Debanjana Bhaumik

This article was contributed by CAREbuddy Debanjana Bhaumik.

Featured photo: Debanjana, her husband, Som, and their 7-year-old girl, Sahana.

 

Both Som and I were working in Oil & Gas sector in Singapore when we relocated to Houston, Texas, USA in 2013. Sahana was born there in 2015. Sahana was diagnosed with autism in 2018 at Texas Children’s Autism Center. Our family moved back to Singapore in 2020. 

 

The early years as special needs caregivers

We had noticed that Sahana was not talking at the age of 2 years old. We brought up our concerns to her pediatrician in Houston. He advised us to wait and watch for 6 months (as kids in bilingual families may delay in picking up speech). Eventually he sent us for evaluation. We had already started speech therapy (ST) and occupational therapy (OT) while waiting for evaluation (12 months wait time). 

Finally, after the evaluation in 2018, Sahana was diagnosed with autism. She was prescribed full time ABA (Applied Behavior Analysis) therapy. We were shocked and saddened by the diagnosis.

In order to double confirm the diagnosis, we also got her evaluated at NUH Child Development Unit (CDU) in 2018 but unfortunately the results were the same. Our pediatrician at NUH CDU suggested to us to stay back in Houston and get the ABA therapy done. Once completed, we could plan to come back to Singapore and enroll Sahana in Pathlight school. 

Hence started Sahana’s journey with ABA therapy in 2019. It was not an easy one, especially considering the cost, resources, time, work/life balance factors for both Som and me. I am very grateful to my parents for their continual support during these difficult times as they made multiple trips all the way to Houston in order to help out with Sahana. It was a huge learning curve for us. Within 3 months we saw awesome improvements in Sahana. On completion of her ABA therapy, we planned our move back to Singapore in 2020. Again, it was not an easy decision for us. Both of us quit our jobs and moved back to Singapore at the start of the pandemic. 

 

Joining a parent support group

Just as we returned back to Singapore in 2020, the Covid-19 wave hit leading to lockdown. There were delays in getting a preschool and EIPIC services for Sahana. At this time, I was looking for parent support groups for special needs (SN) children. I came to know about CaringSG from Edward Chan in the CASPER support group. I also came to know about various parent to parent support groups on Facebook, WhatsApp etc. These groups provided a wealth of information that we needed at that time. 

Photo: Debanjana, Som, and Sahana celebrating Sahana’s 7th birthday.

 

Once Sahana got admission to Pathlight school, I thought it would be good to share our experience with other parents going through the same journey. When I came to know about CaringSG’s CAREbuddy program, I thought it would be an ideal avenue to give back to community. 

After joining and completing the CAREbuddy training, I came to know about a lot of local resources which will be helpful to parents of SN kids while waiting for intervention and or school services. It was a very in-depth training covering a wide range of topics to help you listen with empathy and to empower your caregivers to make the best decision for their family. 

Working as a CAREbuddy intern has been pretty exciting. I am so glad to be able to share Sahana’s journey with other parents. Hope they find something useful from it. At the same time, I have learnt a lot from my caregivers. 

I would definitely urge the caregivers of SN kids to join this CAREbuddy program if they can spare the time. Making new connections and putting yourself out there can be a little daunting in the beginning, but with time, it will be fulfilling journey. 

 

Encouraging fellow special needs caregivers

I am a strong advocate of early intervention. I have seen it in case of my own child how early ABA therapy became the turning point in her intervention journey.

I understand that getting the evaluation report/ diagnosis of special needs can be very heartbreaking for the parents. The societal stigma associated with special needs also makes it quite scary. I will encourage the parents to look beyond this and concentrate on finding intervention for your kids.

Don’t be shy to ask for help from family, friends, professionals, doctors, teachers etc. Do your own research and be willing to learn. Waiting for kids to grow up and think that they will learn by themselves could be too late. Don’t miss the opportunity of early intervention.

Finally, these words taught to us during Sahana’s ABA therapy have always stayed with me, “Parents are the best advocates for their own kids.”

About CAREbuddy

CAREbuddy is one of CaringSG’s Project 3i programmes where trained special needs caregivers (CAREbuddies) provide emotional support to fellow special needs caregivers.

Trainees go through a total of 24 hours of training, followed by 6 months of internship upon graduation. During internship, CAREbuddy interns begin to support fellow caregivers, and our trainers will mentor them as well.

Please join our FB page to receive more updates on how to sign up, and read more about CAREbuddy at https://caring.sg/carebuddy/ 

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From Despair to Hope, A Caregiver’s Emotional Journey – By Kelvin Seah

From Despair to Hope, A Caregiver’s Emotional Journey – By Kelvin Seah

This is my story of autism.

When C, my youngest of two boys, turned two years of age, we noticed he liked to spin objects like a lid or a toy plate, and even large ones like a laundry basket.

As a baby, he didn’t sleep easily, drank milk with great difficulty, ate little, but cried a lot due to acid reflux. He also had frequent breath-holding spells that caused his face to turn blue.

Over the next couple of years, we observed that C lagged behind his peers in gross and fine motor skills. Not to mention socialization skills. 

When he was about three or four, we sent him to the Early Intervention Program for Infants & Children (EIPIC), where he had a suspected GDD (Global Developmental Delay) diagnosis.

At that time, we thought perhaps with help from EIPIC, he will catch up with his peers. That thought gave us some hope.

Still, his progress was glacier-slow, and we felt at many moments helpless and concerned as to what this might mean for his development and entry into primary education later on. We also began to suspect he might have more than just GDD.

One month before he was supposed to start Primary 1, his diagnosis was confirmed. It was moderate autism.

At first, we felt relieved; at last we have a name! But that sense of relief was quickly replaced with many other overwhelming emotions too, not unlike those we first experienced when he went to EIPIC.

We struggled to come to terms with his diagnosis. There were moments of disappointment, guilt, anguish, despair, anger, denial, and fear. All the stages of grief (and then some), but happening in what felt like an endless cycle of ‘rinse and repeat, rinse and repeat, rinse and repeat.

Somehow by God’s grace, we formed connections through various channels that opened up.

Aside from frantic research on our part as clueless parents, my wife and I attended all relevant talks we could find.

We also met and connected with other parents and caregivers through personal contacts, school networks, and online communities.

These gave us the assurance that we’re not alone, and we needn’t be.

In 2019, we succeeded in getting him enrolled in Pathlight, a school for kids with mild to moderate autism. It felt like a huge boulder had finally rolled off our shoulders.

It’s been three years now, and while we don’t know how the next few will look like, we’re hopeful the people and resources we got connected with, will make what would otherwise have been a lonely, fearful caregiver journey, one that’s now more hopeful? 

And maybe every now and then, joyful?

But for now, our story with C continues to unfold. For now, we just give thanks for every day we get to spend with him.

To fellow caregivers, I would like to encourage you that it’s okay to ask for help because no one should have to walk such an arduous journey alone. In particular, I hope more dads would let their guard down and come forward to seek help — it’s not a cop-out or a cowardly thing to be vulnerable. In fact, owning up to a need for help is the real brave thing to do!

Kelvin, his wife Shaw Hui, and their two sons at East Coast Park in April 2021 (photoshoot was conducted according to SMM requirements) 

Kelvin Seah is a father to two boys, born 2009 and 2011. His younger son was diagnosed with autism when he was six. Besides blogging about his caregiving journey, Kelvin is also a volunteer with CaringSG. He completed his CAREbuddy training in 2021 and will begin his internship providing emotional and informational support to fellow caregivers. 

Learn more about CAREbuddy here, and read Kelvin Seah’s original post on his autism journey here.

Photos courtesy of Kelvin Seah. Featured photo was taken on April 2019.

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