Daily living with autism #6 — Beginning again. Again!

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Let me start by saying I want to put the blame squarely on Covid, and the two years of possible intervention that it has robbed us of.

But can I? Honestly?

I’m afraid the answer isn’t all that clear. What was clear though, after a recent annual follow-up with my son’s assigned senior consultant at the local children’s hospital’s department of child development, is this — we need to “begin again” with our autistic son C.

Begin what you ask? Begin assessments and possible treatments and interventions.


Beginning again

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The hard truth when it comes to special needs care-giving is this — parents and caregivers rarely get to sit back and say: “Okay it’s all on “auto-pilot” now. Whatever we could do, we have done. Our kid will be alright and well-taken care of hereon. Even when we’re six feet under and long gone.”

Nope, that is not an option for majority of us caregivers from humble backgrounds and limited resources. Not by the longest stretch of the imagination.

Rather, what is far truer is how as each day, week, month and year passes, new challenges in our children’s development invariably pop up and flip our world upside down again. And again. And again.

Causing us to begin again. And again. And again.

What’s that? “How”, did you ask?

Here’s how we begin again. And again.

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A quick recap here for those new to my blog.

My son C was suspected to have GDD (Global Developmental Delay) when he was about three or four years old. Later, when he was a month or so shy of turning seven, he was officially diagnosed with ASD.

That was in 2017.

Recently we’ve started suspecting if C has dyslexia, dysgraphia, and ADHD. Dyslexia impacts literacy and learning abilities like reading, writing, remembering, and processing information. Dysgraphia has to do with handwriting; it affects the physical ability to write and coherence of what’s written. ADHD kids have trouble paying attention, controlling impulsive behaviors, or are overly-active.

Needless to say, our suspicion was borne out of seeing him struggle with his academic work this year after he moved into upper primary level and harder curricula for the first time. From reading to writing to reasoning through his three subjects English, Math and Science, all signs point to more than just ASD as the “inhibitor” to his learning.

In a way, we’re no longer surprised by this new and grim possibility of more challenges.

Those of us in the ASD community are well aware many with ASD have accompanying comorbidity issues that range from medical ones like epilepsy, cerebral palsy, and migraine/headaches, to behavioral ones like dyslexia, dyspraxia (which affects physical coordination and balance), dyscalculia (difficulty with math and facts), dysgraphia and, most commonly, ADHD.

It would seem that now is the time C’s chosen to show us his comorbidities!

Here we go again…

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I admit.

Part of me didn’t really want to know. Didn’t really want to sit through that Zoom consultation session a fortnight ago with the doc for C’s annual follow-up.

Surely she won’t be telling us anything we don’t already know right? Surely it’s the same old thing again and again right? How he’s still not quite improved in his ongoing drooling. How he still struggles with penmanship. And how he’s still so focused on the same things, the same toys, the same books, the same shows, the same…

But of course, part of me also wanted to know what’s next? What new-fangled therapy, treatment, intervention is going to be our son’s “miracle” cure-all? Even though I know no once-and-for-all cure exists.

And so I sat there in front of the Zoom screen with my wife as we updated the doctor and she in turn recommended the next course of action.

And no surprise what she recommended. More tests. More evaluations. More assessments.

Assessments. Again.

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To cut short a rather painful re-tell of what transpired in that Zoom call, let’s just say it led to a referral letter from the doc with some descriptors that made me feel like a balloon being slowly but surely deflated.

Descriptors like:
“…has difficulties with attention and executive functions.”
“…tends to rush through reading questions and struggles with maths problem sums.”
“…skip words during reading.”
“…will benefit from educational therapy for maths and psychological intervention to improve overall executive function skills and home task avoidant behavior.”
“…consider a psychoeducational assessment including evaluation of executive function skills as deemed necessary.”

Of course, many of these descriptors actually came from us the parents! So my wife and I are complicit in the pronouncements of C’s needs, just as much as the doc. So if there’s to be blame at all, it’s a shared one.


Well, I guess after drying away the tears, it’s onto the tests, assessments, evaluations, and hopefully better interventions.

Covid, I’m still going to blame you. I might have saved our son two years if not for the “necessary” delays your existence created for “non-essential” medical/behavioral assessments and interventions C could have had between 2020 and now.

But just like C’s ASD has its potential comorbidities, Covid’s “responsibility” in this has me for company too.

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