Last week, I embarked on a two-month long training programme.
The programme’s meant to equip me as a ‘befriender’ or care buddy to other caregivers of children with special needs.
Those who need not just the usual professionals like counsellors, therapists, doctors, special needs teachers, or social workers for their children; but also someone who has been on the caregiving journey before, or still are.
A friend to empathise, and be a listening ear and support.
A travelling companion.
A fellow sojourner.
“You’ll never walk alone!”
Having been on this journey for some time now, I understand all too well the confusion and stress of a parent or caregiver.
Especially during the initial weeks of a special needs diagnosis in the family, Those gut-wrenching, world-upending moments can be crippling to say the least.
I also knew well the challenges of navigating the new terrain alone.
As such, I wanted to be available to someone who needs help; to offer him or her comfort and commiseration as they struggle with what to do when their child has been diagnosed with special needs.
And so, without any hesitation, I (along with 11 other care buddy trainees) signed up for this training to learn how to offer that help and support.
Unfortunately, since we are still in a pandemic semi-lockdown, with new Covid case numbers surging daily as recently as this past week, everything had to be done online.
Including live trainings, quizzes and of course the unavoidable assignments.
Assignment – Tell your story
The first assignment we received this week was to write a short story or testimony about our kid’s diagnosis and our journey since.
It seemed like an easy enough assignment.
Haven’t I already done something similar? In looking through my blog archives, I easily found a few entries that looked like they could be used right away.
However, there were a couple of differences this time.
Firstly, I had to read aloud the story of what led to C’s ASD diagnosis to a “Zoom room” of fellow trainees I barely knew.
Secondly, my story ought to highlight what support or lack of I received on the road to where we are today with C’s condition. Not forgetting the emotions experienced along the way.
After some soul-searching, and “borrowing” from my past entries, I wrote the following:
Telling my story of C’s ASD
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.
We thought it was all in good fun. Maybe it was just a phase that would pass.
We didn’t realise then that it was one of several early symptoms for autism.
Looking back, I guess we had suspected C to have special needs. We just didn’t have a name for it.
Yet.
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.
A parent’s worst nightmare!
To this day, I vividly remember once, when he was just 5 months old, we spent what was supposed to have been a relaxing family dinner at the MacDonald’s outlet in Marina Square Shopping Mall. As we stepped out after dinner, my wife noticed there wasn’t any sound or movement coming from the baby stroller.
The second we looked in, we realised something was wrong. C appeared not to be breathing! Right there outside MacDonald’s, our dear boy had what must surely have been his ultimate breath-holding spell of all!
Everything after that seemed a blur now. I just remembered rushing him to the Children’s Hospital, where he spent the next four nights undergoing a battery of tests but without any conclusive outcomes.
His was a difficult first year for my wife and I, to say the least.
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.
Compared to his older brother, he also took longer to walk and talk.
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.
Can autism be “fixed”?
By the time he turned six in 2017, we knew he wasn’t ready for mainstream primary school. So we applied to the Ministry of Education for a deferment.
But to be deferred, he needed an official (read psychological) diagnosis.
It was a big step for us. We worried what that would mean for him and his future. What it would mean for us as a family.
Yet at the same time, we wanted to know, once and for all: Was C on the autism spectrum?
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! And maybe we can finally get the right support and know the next right step.
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.
Just more pronounced this time.
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.
At times it felt like God dealt us a cruel hand, like in a poker game!
Many questions popped into our heads: Can autism be fixed? Would he (or we) ever have a normal life? What happens when we his parents are six feet under?
The questions were endless, from pragmatic to existential.
Knock, and the door will…
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.
You’re doing great work here, Kelvin. The same thing you felt (when you realised you weren’t alone), you’re now gifting to others through your stories, as vulnerable as it could be to share them. Thanks for this, and keep on keeping on!