Siblings play a precious role in the lives of persons with special needs. The MINDS Siblings programme, or MINDSibs, creates a community of care for siblings of persons with special needs in their journey of caring for their siblings with special needs. Learn more about the joys and struggles of caring for a sibling with special needs through stories from the MINDSibs community.

“From the interaction with other caregivers, I realised many of us had difficulty searching for centres for our siblings with special needs due to various stipulations. I was very encouraged by their stories and hoped more would join this support group.”
Sibling to a PWID

2021 marks my fourth year of stepping into the role as a primary caregiver to my brother with special needs. I took over the responsibility from my mother who had suffered a stroke in 2018, and I realised that I never truly knew my brother as I was busy working to support my family. There and then, I decided that I needed to spend more time with him to understand who he is as a person with special needs.

The last three years have been very challenging. My brother is not able to express himself verbally, and I struggled to understand him. It was also difficult to encourage him to warm up to me while helping him adjust to my new role as his primary caregiver. I also had to accept that I would no longer enjoy the independent and self-focused lifestyle I was used to.

I started to bring my brother with me wherever I went so that he would be able to experience “everyday life” with his sister. We would go to hawker centres for our meals, visit the Singapore Explorer, take short walks around the estate, and take part in a variety of routine activities together. While these might sound mundane, they were memorable for both of us. When Phase 2 restrictions eased further in late 2020, I was informed that he still could not return to the previous centre he was enrolled in. That set off a series of frustrations as I had no one to turn to for help in finding another centre for him. At the same time, I had to continue working. I turned to a few agencies for help but to no avail.

After countless phone calls and with the invaluable help of a friend who had a son with special needs, I was connected to MINDS. The staff at MINDS started looking for a suitable centre for my brother and was able to find one after a few months. I was also invited to join MINDSibs – a caregiver siblings support group. From the interaction with other caregivers, I realised many of us had difficulty searching for centres for our siblings with special needs due to various stipulations. I was very encouraged by their stories and hoped more would join this support group. That way, we would be able to encourage and empower one another to move forward in our journeys with our siblings with special needs, no matter how tough the situation is.

Foremost in my mind now is to draw up respective plans for our future, especially in areas like medical assistance, affordable HDB housing (similar to senior Community Care apartments), and finances as we age. I believe that medical assistance and housing for ageing single caregivers and their siblings with special needs require more attention from the government. I hope the relevant authorities will look into this aspect and provide the necessary resources for our aging years. At this moment, life has almost settled into a new normal for us. I read that people with special needs have a short life span. I learned not to worry about how long my brother will live and not to worry about tomorrow; for tomorrow will care for its own. We will continue to live one meaningful day at a time.

Learn more about the MINDSibs programme and community on the MINDSibs Instagram page @mindsibs_

Featured in the November 2021 issue of MINDShare – our monthly e-newsletter. Follow us on Facebook and Instagram for more stories and updates from the MINDS Community!

NOTICE OF THE 59TH ANNUAL GENERAL MEETING OF MINDS: NOTICE is hereby given that the 59th Annual General Meeting (AGM) of the Movement for the Intellectually Disabled of Singapore (MINDS) will be held by way of electronic means as follows: Date: Saturday , 18 September 2020 Time: 9:30am (Registration starts at 8:30am) Venue: Online via ZOOM MINDS members will be receiving an email on the notice of AGM and are strongly encouraged to register your attendance to facilitate the verification process on the day of the AGM. For enquiries regardingthe AGM, members may email to [email protected] or call 849607358