Looking back, I guess we always suspected Caleb had special needs, which we later found out to be autism. This was a suspicion that we already sensed when he was a baby.
He didn’t sleep easily, drank milk with great difficulty, ate little, but cried a lot. Everyone we knew assured us a second child would be easier to care for. However, these same people were nowhere to be found on our trying days and nights, over the course of Caleb’s first 12 to 18 months.
He took longer to walk and talk, compared to his older brother. When he turned two, we noticed he liked to spin objects like a lid or a toy plate, and even large ones like a laundry basket!
This was one of several early symptoms for autism, though we didn’t know it then. We thought it was all in good fun, and he was after all still a toddler, Maybe it was just a temporary ‘thing’? A fad that would fade?
Over the next couple of years, we observed that his gross and fine motor skills were also lagging behind his peers. So at one stage when he was around four, we sent him to an early intervention program for kids below seven.
His progress though was glacier-slow.
By the time he turned six in 2017, we knew he wasn’t ready for mainstream primary school, so we had to apply to our country’s Ministry of Education for deferment. To get it, he needed an official diagnosis.
It was a big step for us as we worried what an official diagnosis might entail for his future assimilation into society. But at the same time, we had to know once and for all:
Was Caleb autistic?
So after a few rounds of ‘testing’ at our national children’s hospital, Caleb was officially diagnosed in December 2017 with Autism Spectrum Disorder (ASD) and Global Developmental Delay (GDD).
This was one month before he turned 7; one month before he was supposed to start mainstream primary education.
His ASD was deemed moderate though, a label we took some comfort in as it sounded far better than ‘severe’. Still, it meant that our world could never be the same again.
There was a lot of inner struggle as we tried to come to terms with Caleb’s diagnosis. There were moments of disappointment, anguish, despair, anger and fear. So many questions popped into our heads: “Can autism be ‘fixed’?” “Would he (and we) ever have a normal life?” “What kind of learning path will help him?”
The questions were endless, ranging from pragmatic to existential. The one overriding question was: “What will his future look like when we, his parents, were six feet under?” If ever there was a more bone-chilling question for a parent, I don’t know it.
But there was no time to dwell on these tough questions. My wife and I realised we needed to intervene tangibly, and help Caleb overcome major challenges he will face growing up.
At the start of 2018, Caleb repeated his final kindergarten year so as to give us more time to ready him for mainstream primary education in 2019. By then, he would be a year older than his peers, and hopefully a year ‘wiser’ too!
Concurrently, I applied for a year-long sabbatical from full-time tertiary teaching in January 2018 to focus on staying home with Caleb. However, freelance work came my way soon after. So I left teaching to focus on that instead, since it allowed me to work from home on most days.
By mid-2018 however, it was clear Caleb wasn’t ready for mainstream education. So we decided to apply to a school that offered places to kids with mild to moderate autism. Class sizes were much smaller, and the learning facilitated at a pace more suited to the unique learning challenges of these students.
By May 2019, my freelance work overtook meaningful time with Caleb and his brother, and I decided to quit it and focus fully on them. I never doubted the wisdom of my decision, though I had to reorientate myself to life outside of a fixed job title, status and a monthly pay check.
Life without a job title or status
Since then, I’ve had to constantly review what is my value and worth as a husband, father and man. Not easy, given the day-to-day humdrum of child-minding and staying home (this was way before Covid hit).
On most days, all I could show the world to justify my worth and identity is a completed piece of math worksheet, finally done after a major tussle with a restless kid.
Quite frankly, who really cares about that, right? Even I would rather forget about it!
But that’s just how it is. The daily challenges of adjusting my expectations of, and patience with, Caleb and his drawn-out developmental delays. Even now we still ‘wrestle’ with him, who turns 10 in four months, when it comes to his drooling, bed-wetting and slow bathing and eating (details in this previous post).
Still, I wouldn’t trade Caleb nor my time as a stay home dad for anything. He’s teaching me daily what it means to let go and let God, making me rely even more on strength and sustenance from on high.
Meanwhile, my journey with Caleb continues.