Open Doors: One Caregiver's Journey to a Better Life
Navigating Challenges, Finding Support, and Embracing Resilience
My name is Syikin, and I have two special sons. One of them, F is from a Special Education (SPED) school with a National Curriculum, while the other, H comes from another SPED school focusing on life skills. Even though both are on the Autism Spectrum, they cannot be in close proximity to each other.
They trigger each other and end up having meltdowns, harming themselves and those around them.
Things are more peaceful when they are at school, but once they are home or during the holidays, every single day is like a ticking time bomb.
We faced stigma when H was warded at a children’s hospital. When he was younger, he was hospitalized for epilepsy. Since he was also non-verbal and kept screaming and making noises, people around us were very unhappy. We even had toddlers scolding my son ,’Naughty boy!’. Most of the time, we had to draw our curtains, at the same hearing the complaints from other parents to the medical staffs. People don’t understand; there were even toddlers scolding my son. I’ve had parents ask us to draw our curtains.
Eventually, the doctors offered us a transfer to a single room without extra charge, which was very kind. But the stares we received when we moved out made us feel like a spectacle; it was horrible. I think we cannot control what others around us think. People usually lack empathy over something that they do not understand.
H’s school had a social worker who tried to secure a short respite spot for him. Unfortunately, it was rejected because he did not meet two criteria, one of which is challenging behaviour, which he exhibits, alongside his chronic medical condition, epilepsy.
If he is rejected even for respite, what happens when there are no more family members left? Who will take care of him? Most organisations and agencies say, “Oh no worries, the government will take care of him under welfare,” but where? And how?
Even now, placing him somewhere is problematic — how will he live? It’s not just a matter of how, but also where. Which facility will accept him? Currently, nobody wants him, mainly due to his behaviour, staffing issues, and his epilepsy, which they don’t know how to manage.
Even with a nurse on staff, the nurse can’t handle medical emergencies like those related to epilepsy.
After multiple rejections, and persistent efforts by social workers, we were given a chance for a one-week, transition-phased trial at a day-activity centre.
On the first day, I received a phone call by the afternoon — he had a meltdown. By the end of the second day, after another meltdown, the trial was cancelled.
I could understand their reasons, of course, because H was throwing things at people, and their staff-to-client ratio of 1:10, which was already quite high and meant that they could not manage.
If he’s rejected time and again, and no other special needs facility can accept him, what will happen to families like ours? Where else can we turn to for help?
Getting Support from CAREbuddy and CAREwell
In 2022, I filled up up an online form on the website of CaringSG. Not really knowing why, just trying to reach out. You know, over the years your support system comes and goes. People will open up, close the case, and then go somewhere else.
Some will not be there for you, or can’t establish a rapport, or maybe people leave, then you have to start all over again.
That’s how I started with CaringSG, through CAREbuddy at first. My CAREbuddy and I had Zoom sessions together, and met up for breakfast. She was my CAREbuddy for 8 months.
After that, I was transferred to CAREwell as my CAREbuddy was concerned and raised my issues, and eventually I met with the transdisciplinary Keyworker and the other supporting professionals in CAREwell team.
By this time, I was ‘drowning in despair’; you feel like you are gasping for air due to constant stress and chest pains.
The first time I met my Key Worker, Shari, was at my house. I was really desperate for help, to a point where I’ve had numerous emotional breakdowns. The ultimate one ended up with me being warded in IMH (Institute of Mental Health). I had a lot of thoughts of ending my life, yeah. The psychologists, counselors, or social workers will ask you a lot of questions like “Do you have any plans to kill yourself?”
The plans are there. The plans are scary. I see my sons and think about taking actions on those plans. You know, you see knives and buildings, everything.
But thankfully I have a phobia of pain. I hate pain. And that fear was my protective factor. You don’t really want to die, you just want the emotional pain to end.
Stay at IMH
Anyway, I had a short stay at IMH and was supported by CaringSG and the CAREwell Key Worker, with many other agencies involved.
At that time, the case of the father who murdered his twin sons was huge… and that scenario felt very real for my family because we were a ticking time bomb. I was a parent being abused by my own children. There’s Child Protection Services but no Parent Protection available. They said they would refer me to a Family Service Centre (FSC), then just more referrals and in the end, nothing. You don’t hear anything from them anymore.
And as a caregiver – how do you feel when you have to repeat yourself so many times and get no help? You lose hope and the possibility of your family becoming that tragedy becomes so real. We are like the ping pong ball. What’s the use of having these agencies if they cannot even work together?
I’ve joined several support groups, be it for special needs or for mental health, but for me, it doesn’t suit my needs. There are too many sharings but not much help involved. I felt my concerns were not being heard. Even with a doctor, they draw a line and you feel like you are just another number. By myself, I can write in and they will just ignore me, because I am just a caregiver, right?
With so many services, I realised that no one is talking to each other. That’s very important to highlight. And you really need a KEY person to tie everyone together and get everyone to work towards a common goal, supporting the whole family.
And that is exactly what a key worker from CAREwell is for!
CaringSG was effective; The CAREwell Key Worker helped me to reflect and did advocacy on my part, getting things moving and speaking to different agencies to finally help me. Both of them really helped to move the immovable doors by banging on them.
CaringSG took the time to visit me at IMH. I was not even visited by people who should have, and was judged by my own family.
Judgements by Family
During my stay at IMH, I saw patients wailing and having meltdowns during visiting hours. This happened due to the hurtful remarks of their loved ones who couldn’t relate or empathize. They will say that YOU ARE THE WEAK ONE, when actually, they don’t understand.
Honestly, I have the utmost respect for the patients there, who need to put on a brave front all the time. There were a few of us, people from different races, who clicked so well together. When you are so alone in your life, all you want to do is tell these visitors, “Hello, we are not crazy, we are hurt”. Please don’t push us more to the brink. Please don’t be the ones who make us jump to our deaths!
So, I felt very awkward after I went home. I built a lot of walls around me and became very quiet because I did not want to open up or talk. I felt very vulnerable being back with my family. My responsibilities as a caregiver resumed and very quickly I became overwhelmed again.
Once again, people around me would say, “What happened to her?” They don’t like to see that, and you get criticised again.
Among all my family members, when my son was younger, they would ask, “Why is my beloved one in SPED School?” Parents want their kid to be in Raffles Institution, in Victoria School, or at least in some normal neighborhood. But mine is in SPED School.
And even in the special needs community, there is stigma. You have SPED School with National Curriculum, the cream of the crop of special needs, to SPED School, seen as the bottom of the barrel. Hello, I can say I have both! Both of them living next to each other.
When H was in KK Hospital with 23 probes on his shaven head, glued for 24-hour monitoring for his epilepsy, with that thing on his head, a relative said this during a videocall, “H, you are normal, right? Meditations are the ones making you like this”. I felt blamed and misunderstood upon hearing this.
Family members would ask about F, “Last time your son used to be so cheerful, what happened to him?” while even forwarding videos of him as a cute, cheery child. Sometimes, you just want to take a deep sigh and tell them if only they knew.
Everyone grows up. People change. The environment changed them. Puberty changed them. Maturity changed them. The situation changed them. So they are not the same as what they were before.
Over time, CaringSG also helped to advocate for me to speak up for myself as a caregiver. I learned to speak up and yes, there are changes, which is good. You still hear comments, but you tell yourself to let it go, no matter how difficult.
A Miracle Happening at a Cost
Then, a miracle happened one day. Through many interactions, and after multiple rejections, we managed to get ourselves an interview for my husband and myself, hoping we might have a chance to give H a placement inside an Adult Disability Home.
Eventually, they offered H a trial for three months to see how it would go. Even then, I was still worried and skeptical that it would not work out because of our past experiences. Once the numbers were crunched, my husband said that financially we would find ways to manage, like cutting our expenses, new problems arose. The moment he stopped giving me — a stay-at-home mother — pocket money, I was left wondering how I was supposed to pay for all the other bills like groceries and Grab fares.
I felt like a beggar having to ask for money all the time and questioned him, to which he said it was about being mindful of expenses because of this new fee. So, he was trying to cut expenses in different areas to make it work.
Going for Surgery, and learning to speak up for myself.
So, there were things that I had been putting on hold for too long, like my carpal tunnel surgery which had been delayed for 6 years because of caregiving. When I visited the surgeon, he told me I needed surgery on both hands, to which I replied it was impossible because that would make me an invalid with no one to look after me! Someone would need to be a caregiver to this caregiver.
The surgeon understood and said that based on the severity, my left hand was worse than my right. So we decided to operate on the left hand first, and that’s where we are now.
I started showing pictures of the stitches to my family to justify me being incapacitated, and hopefully, to get more empathy from them. Shari also encouraged me to advocate for myself and get things done to serve my needs because I needed it!
This was also true when I went for my appointment in psychotherapy. After a 20-minute interview, they said that my case was just caregiver stress and referred me to Club Heal, but I needed more help! Given my profile, I would need a psychologist to help me out. I mentioned that I would like support from a psychologist to help overcome my trauma every single time my son has meltdowns. I didn’t want to end up warded in IMH again. They understood this and listened to my concerns.
Casualties and the Importance of reaching out
We have so many casualties here as well, people who fall through the cracks. With this sharing, I hope it gives purpose and meaning to our suffering.
When your so-called dreams of a fairy tale marriage or family are shattered, and these rocky roads less travelled you are experiencing is super challenging, take a deep breath…. There are many families traveling the same chaotic journey as you, no matter how lonely it can feel.
We may not have the same situation because our families are different, but we go through life, continually ping-ponging through all the stages of grief every moment. For a special needs parent, your grief is every day, for the rest of your life, whether you want to admit it or not.
So no matter how lonely you feel, never stop reaching out. Because once you stop reaching out, that moment of despair can pull you down very fast. You will sink very fast, without even realising it.
Keep reaching out because there were times you really wanted to give up, but you actually want to live!
You really want things to change.
I'm not all the negative things people say about me.
I'm strong.
I'm courageous.
I'm fearless.
Caregiver Syikin
How to register for CAREwell?
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