Kelvin's Musings

Tag: Autism

• How soaked bibs, leaked diapers and supervised showers are my daily lessons in acceptance

  Posted at 8:26 pm by Kelbungy, on July 4, 2020

  There are three things you’ll typically hear in my household on any given day or night:

     “Caleb! Is it (his chin) dry? C’mon Caleb, swallow your saliva, please. Look, your bib’s
  all wet!!”

     Night: “Caleb! Come and shh-shh (pee) now before bedtime. Then wear your diaper    properly before you get into bed. Be sure it’s pulled up snugged and tight.”
  Morning: “Get up Caleb, your diaper’s leaked onto the sheets!”

  “Caleb, we need to see more white (bath gel lather) on your shoulders…rub harder before you wash it off…Caleb, listen and towel-rub harder; your legs are still dripping wet!” 

  Soaked Bibs.

  Leaked Diapers.

  Supervised showers.

  These are our “daily companions”, thanks to our dear son Caleb.

  ___________________________________________

  One of the most frustrating things for me his dad is the fact that I just can’t figure out why…

  1…he’s still refusing to swallow his saliva despite endless reminders from his grandparents, parents, sibling, and cousins, aunts, uncles; not to mention school teachers and classmates.

  In short, everyone who knows him.

  And in this season of Covid-19, it just makes it even more imperative that he exercises better control over his drooling. But true to form, our dear friend still ‘lets the good times flow’ with his never-ending drool that soaks any face mask thoroughly within half an hour of putting it on!

  2…he still can’t “hold his own” until he reaches a toilet. It’s why our nightly routine is about getting him to go one more time before putting on a diaper and turning in.

  And still, by the next morning, the diaper is heavy with you-know-what, and some days, when his flow is particularly strong, we’ll have to contend with soiled bedsheets and blankets!

  Thankfully it’s been a lot better these last couple of years, and the leaks only happen once in a couple of months or more. But just as a precaution, we will usually transfer him to a rubber mattress laid out on the floor next to his bed just before the sun rises each morning.

  Just in case.

  I mean, it’s fine and dandy if he’s a baby. But he’s not. And how many “niners-going-on-ten” do you know who still dons a diaper?!

  3…he continues to stand almost ‘helpless’ in the shower, as though waiting for us to bathe him like he was still a baby.

  We have to always get into the shower room with him to watch and make sure he starts dirty but ends up clean. Otherwise, all he will do is either break into a song or re-enact some dialogue between the cartoon characters he recently watched on the telly or Youtube.

  All the while standing and staring at the showerhead, instead of turning on the tap. As though the tap operates by voice command!

  Other times, he’ll role-play the Google map voiceover, giving directions to the shampoo bottle (?) how to get from point A to point B: “In three kilometers, turn right…slight left, then your destination is on your right.”

  ___________________________________________

  At this point, I have an inkling of what you’re thinking, so please let me make one thing clear: We really have exhausted nearly all possible reasons, medical and otherwise, so this isn’t a post pleading for more magic potions or angel’s feathers.

  Caleb has managed to defy definition with pretty much every appointment, therapy and medication we ‘threw’ at him in our increasingly futile attempts to find out why.

  In our attempts to turn the tide.

  About the only thing left is the threat of bodily harm, but no matter how angry a parent I can become, that’s one line I won’t cross. Though God knows I’ve often come close. Too close.

  Sighhh…

  I think I’ve come to a point where I’m learning that these daily challenges with Caleb are part of my ongoing journey towards accepting him for all that he is.

  Even the bibs, diapers, and supervised showers.

  You see, as I watch each time with mounting exasperation at all these ‘wet signs and wonders’ of Caleb, I have to fight hard to stay cool and not lose my temper.

  For I realize that if I can’t accept these challenges (which might still not go away for a long while), but continue to harp on them to a point that all day I’m just ‘managing’ behavior and having a tug-of-war with him, then what kind of genuine relationship am I building with him?

  Where is there time left every day if, after all these reminders, I’m too spent to do anything else with him? Time to play with him, read with him, share life with him?

  And when he grows up, will memories of his dad be filled with just those rants I shared at the start of this post?

  If so, then I would have missed learning the important lesson of acceptance.

  And we would both be the poorer for it.

   

   

   

  Posted in Advocacy, Autism, Caleb, Reflections, Stay Home Dad, The Good The Bad & The Ugly | 0 Comments | Tagged Autism, Daily Living, Fatherhood, Fathers & Sons, Life, Raising children, Spirituality Family Parenting

• This is It! 3 Things that Define My Blog “kelvinsmusings”

  Posted at 8:35 pm by Kelbungy, on June 13, 2020

  Yep, this is it!

  Most would say this ought to have been the first thing I wrote when I started my blog 14 months ago.

  Funny then that only after more than a year of blogging, I’m finally doing it today!

  Now just to be fair to me, I did mention what my blog was about before. This was in my very first post in April 2019.

  But looking at that now, I realize it doesn’t really capture fully what my blog is about. Especially not in recent months as my blog content has expanded in its topical diversity.

  So perhaps it’s just as well I’ve held back until now. Cos some things just take time to mature, like a good bottle of wine.

  And though my blog’s About page sheds some light, there’s still a need to clearly and succinctly present the intent of my blog.

  So at least you, my dear reader, will know what you’re in for each time you pay a visit. And, hopefully, you will do so more than once!

  So let’s do this, shall we? *grin*

  My blog “kelvinsmusings” is all about one dad’s musings on his unfinished journey with:

  1. Autism
     This was what got my blog started.

     You see, I have two boys, currently aged 11 and nine. The youngest was officially diagnosed with moderate autism in December 2017, a month before he turned seven.

     That began a roller-coaster journey for me and my family. Since that diagnosis, our family has been thrown into such an emotional tailspin that blogging has become my way to calm me down, piece things together, and figure him out.
     And figure ‘me’ out as well.

     The ‘me’ who is his dad.
     The ‘me’ who needs to be present for him and his needs.
     The ‘me’ who has absolutely no clue how to do any of that!

     So this blog has become an important way to process, learn, and share with those like me what I’ve come to know about this life-long disability.

     (Maybe with even those unlike me)

     It has also become a platform to speak out on social inclusivity for people like my son. For me to try and advocate for more grace and understanding from those who don’t understand him. Those who could potentially stand in his way towards leading a normal, productive life in society when I’m long gone.

     So you will see posts about the raw and real challenges I have with him. But also the moments of pure joy and revelation. And a suggestion or two thrown in for good measure, all in the name of awareness and advocacy for inclusion.

  2. Parenting
     I have been a dad for 11 years now. It’s not a lot I know. I’m probably a babe in the woods compared to other dads.

     But American writer Flannery O’Connor once opined that anyone who survives childhood has enough information for the rest of his or her life.So my childhood and those of my two boys (who are still living theirs in real-time now), mean that I already have three times the amount of info and materials I need to talk about matters close to every parent’s heart!

     But, and this is where I’m going to disappoint some of you, my posts will probably not distill many parenting “hacks” (don’t you just hate this overly-used word?).

     Hey, I’m a stay at home dad (SAHD) after all, so you would expect me to be true and not the least bit flawless right? Cause that’s what a SAHD (get it? *wink wink*) is like in the dirty day-to-day realities of life.

     In a word? S . A. (H). D!

     Which is where I prefer to be actually. Real and raw. No holds bar.

     So if that too is where you prefer to be, then stay tuned, ok?

  3. Life
     That little ditty by Des’ree always plays in my head each time I see this word on its own, like some ear worm you can’t dislodge!

     “Life, oh Life, ohhhh Li…fe…oh Life…to doo to too…!” (Preach it sis-tah!)

     And since at least some aspect of “Life” can pretty much be found in any blog post just about anywhere, consider this my third thing a catch-all  ‘cheat sheet’.

     Apologies, just trying to be honest. And calling out the truth about all my fellow bloggers too. (Aww c’mon you guys, admit it!)

     However, since everyone’s unique, you can at least expect me to give my ‘unique’ take on what life throws at us. The same goes for many bloggers out there too.

     In my case, you’ll likely see posts about Life relating to stuff like:
     – current affairs
     – social issues
     – art of reading & writing
     – reviews of books, films and maybe the occasional TV series
     – teaching & learning
     – justice & society
     – faith, hope & love

     All from my perspective of course, but always with a desire to bring forth certain universal truths that will hopefully resonate with you.

     Cos hey, that’s what universal truths ought to do!

  Okay.

  That’s it.

  Unveiled and unpacked.

  The manifesto embedded in my blog name’s subtitle: “A Father’s Unfinished Journey with Autism, Parenting & Life”.

  Now, on with the show! (If you’re new to my blog, the best place to start would be here)

  Oh, wait.

  One more thing.

  I post every Wednesday & Saturday, around my local time at 8.30 pm (GMT+8).

  I mean, if you want to lock it into your planner.

  Just saying. *wink*

  Posted in Advocacy, Autism, Book Review, Caleb, Christianity, Film Review, Jaedon, Reflections, Society, Stay Home Dad, Teaching/Education, The Craft of Writing, The Good The Bad & The Ugly | 0 Comments | Tagged Autism, Blogging, Life's Journey, Society, Spirituality Family Parenting, Writer's Life, Writing

• I pray weekly for my special boy in these 7 areas – for his future

  Posted at 6:27 pm by Kelbungy, on May 3, 2020

  Every parent has aspirations and dreams for their children, spoken or otherwise.

  I’m no exception.

  What is an exception though is the stuff I hope for when it comes to Caleb. The majority of the world of parents with neurotypical kids can more than reasonably hope for their offsprings to grow up strong, smart, independent, married, and materially successful.

  Those aspirations, however, look a whole lot different for the rest of us with our special kids.

  Now I know I’m not alone, and there are parents out there like Cammie McGovern and others, who have far more challenging circumstances than I.

  So I take nothing for granted and recognize that time is of the essence. I also recognize that at the end of the day, there’s only so much I can do. The outcome is still very much in the hands of Caleb’s Maker and Creator.

  As such, since a year and a half ago, I began to make a list of areas I hope to see Caleb gain better control and mastery over. Each night after he and his brother fall fast asleep, I would enter their bedroom, listen, and watch closely to ensure that they are breathing easy and blissfully oblivious to my presence. Then I would lay my hand on first one, and then the other, of their tranquil frames to pray for them.

  (Call me paranoid if you must, but I just think the prayers work better if my kids don’t know about it!)

  For Caleb, these are the 7 areas I commit to the Lord, one for every day of the week:

  Monday
  For the first day of the week, I would pray for his fine motor skills. That he can write clearly, color well within boundaries, copy sentences accurately, and fill in simple personal particulars like his name and class. (His fine motor skills have always been hampered by the delayed muscle development of his fingers and hands)

  Tuesday
  On the second day, I switch over to pray for his gross motor skills. My dear boy hasn’t always felt confident or even aware of what wonderful leaps and bounds the human body is capable of. As a result, for most of his life, he’s been fearful of playground obstacles, and unwilling to test the limits of what his body and limbs can do. Things like hopping, skipping, jumping, and running. Not forgetting throwing, catching, bouncing, and kicking. And don’t even get me started on climbing ladders, stairs and structures, and riding the bicycle!

  Wednesday
  Midweek, I would pray for Caleb’s adaptive areas. My nine year old still wears a diaper to bed each night, and he carries out his bathing and toilette functions supervised by at least one adult. He still needs help buttoning some of his shirts, and just dressing in general. His washing & self-grooming skills, brushing-teeth skills, and cleaning-up-after-meal skills are all still works in (agonisingly-slow) progress.

  Thursday
  Come Day 4 of the week, I pray for his cognitive areas. Here I’m looking a little further into the future, and hoping for his play and money skills to be groomed, as well as his math concepts to be cultivated. I also hope for his language, problem-solving skills, as well as his ability for recalling events to be sharpened.

  Friday
  On this day, I pray for Caleb’s social communication areas. I ask God for Caleb to (at least) follow three-step instructions and inform as well as make comments effectively. I pray he adheres to conversational rules, establishes appropriate social-communication roles, asks and answers questions well, all the while holding good, reciprocal conversations with everyone.

  Whew! Looking back on what I just wrote, it suddenly dawns on me what a huge load I’m placing on God’s shoulders for Caleb’s development! But thank goodness our God is more than able.

  So let’s go on…

  Saturday
  As the weekend begins, I pray for Caleb’s social areas, asking God to help him manage emotions well, play cooperatively with peers, be aware of himself in relation to others, and participate joyfully and meaningfully in large social groups.

  Sunday
  Last but not least, I will end the week by praying for Caleb (and his brother) to always honor, love, and cherish Jesus; and us their parents. (In that order)

  For now, these seven areas capture my hopes and aspirations for my little one, who’s not going to stay so much longer. Of course, I’m not so naive as to expect all of them to be answered in one fell swoop. Or even for every one of them to be fully and completely answered to my satisfaction.

  But hey, I’m a parent so hopes I will always have right? Plus, I’ve seen progress in him these past 18 months since I started praying, so my hope springeth ever eternal!

  In any case, these nightly prayers are how I choose to end off each day I get to spend with him and to love him.

  And perhaps most importantly, these prayers remind me that I can “plant and water”, but only God can bring about the transformation and growth I desire for Caleb.

  So when a day has been exceptionally trying, these nightly reminders are just what I need to anchor me and my aspirations and hopes for him.

  And for his future.

   

  Posted in Autism, Caleb, Reflections, Stay Home Dad | 1 Comment | Tagged Autism, Developmental Delays, Faith, God, Hope, Love, Religion, Spirituality Family Parenting, Transformation

• Why I began this – a celebration (and reminder) on my blog’s 1st anniversary

  Posted at 11:43 pm by Kelbungy, on April 25, 2020

  Gosh, I almost missed my blog’s first anniversary!

  Can’t blame me though; it’s been a month filled with anniversaries. My wife and I celebrated our 20th wedding anniversary on the 1st (nope it’s no April Fool’s joke), and our eldest boy turned 11 on the 8th, inching closer to the potentially tremulous teenage years. 

  In the proverbial blink of an eye, a year has indeed come and gone. And since I started this blog in April 2019, what a year it has been. As I add yet another post now, I look back over the past 12 months and 5 days since my first, and realized that while I started this blog to chronicle my journey as a dad to an autistic kid, it’s morphed into so much more!

  In the past year, my blog has covered topics that included parenting, education, employment, advocacy, and even book and film reviews. I’ve also been writing about my take on what’s been going on in these recent months with Covid-19.

  It’s certainly been an eventful period for a newbie blogger’s humble foray, with no lack of materials and content to palpate and blog. The only thing stopping me when there were long gaps between entries was, well, just me and my inertia.

  As the Gen Z kids would say, “my bad”!

  Fortunately, biting the bullet by paying good money to take on some online writing courses at the end of 2019 has forced me to be more disciplined and diligent. These courses also made me want to pursue writing and blogging more seriously.

  As such, since 2020 started, I’ve managed to upload at least one blog post every week. And I’m also continuing with my target to complete the first vomit draft of my book-length memoir on being a stay home dad by end of June 2020!

  I hope to keep both these writing projects going, and by extension, my writing life flourishing.

  Unfortunately, as I reflect on what I’ve written since taking on this personal blogging project, I’ve come to one conclusion: I’ve forgotten what drove me to create this blog in the first place: my son Caleb.

  Viewing a local play online today was the proverbial kick in the hiney I needed to bring me back to him. You see, in recent weeks, internationally-renowned musicals like “The Phantom of the Opera” have been streamed online for free weekend viewing since no theatres have been allowed to open thanks to Mr Covid.

  Here in Singapore, an established theatre company followed suit this weekend with a ‘re-showing’ of a play they adapted from the States and presented to local audiences four years ago. Called “Falling“, it depicts the struggles of a family living with an 18-year-old son with severe autism. Pangdemonium Productions has always staged high-quality plays and musicals here in Singapore, and this had been one we missed watching back in 2016. So I for one was glad to have the chance to watch it online today for free (Do catch it before the link expires at 1159 hrs on 26 April 2020, Singapore time).

  The play reminded me that there’s still so much I needed to understand about the whole autism spectrum disorder, and how it affects the lives of those living with it. And more importantly and urgently, it reminded me how I must continue daily to intentionally intervene to help further Caleb’s growth and development.

  While we have been so blessed that Caleb’s autism is far milder than Josh’s (the character in the play), how adaptable and independent Caleb can be when he turns 18 in less than 10 years from now, will likely rest on how his parents raise him.

  There is no time to dawdle. There remains the need for me to ‘blog on’ with this unfinished journey I’m taking with him. And in doing so capture important learnings, make this one for the family archives, and share them with anyone out there like us.

  So here’s to more future posts where I share and distill my life with Caleb, and chronicle his life and what he’s continuing to teach me daily.

  Happy 1st anniversary!

  It’s all because of you, Caleb.

  And this is all for you, and your brother too.

   

  Posted in Autism, Caleb, Reflections, Society, Stay Home Dad | 0 Comments | Tagged Anniversaries, Autism, Blogging, Children, Coronavirus, Covid-19, Family, fathers, Life, Love, Parenting, Purpose, Reflections, Relationships, Singapore, Society, Wedding Anniversary, Writing

• Living with Daily Defiance

  Posted at 6:36 pm by Kelbungy, on March 12, 2020

  Want to know how mind-slammingly hard it can be living everyday with kids? How about with a kid that ‘gets it’ but also doesn’t ‘get it’?

   Let me explain.

  You see, it’s kind of hard working with children who have special needs like my Caleb. With him, it’s always a fight to transition to doing something different. It’s not that your neuro-typical kids aren’t also a handful. Of course parents all over the world have had to fight constantly when it comes to asserting their ideas and opinions and plans.

  But this post really isn’t about that as much as it’s about the actual struggle.

  With Caleb I often find that it’s both predictable and unpredictable. But when it happens, it will happen over a longer-than-I-would-like period of time! And it just shreds my patience to bits and pieces.

  Like his eating.

  He just doesn’t understand that simply staring at the clock will not stop time. So, even though he’s still many many mouthfuls away from finishing his dinner at 7.30 pm as agreed, in order to be granted his TV cartoon time, he won’t make it if he doesn’t consistently put spoon to food to mouth, but stares blankly or chats incessantly!

  Like his morning routines.

  He doesn’t realise that if he doesn’t decide in the next minute what toy he wants to bring out for his daily car ride to school, we will be late. And despite several warnings and attempts to have him decide earlier, even the night before, if the little man decides to change his mind right there and then as we’re about to put our shoes on and step out, then the tussle begins.

  Like his insistence I drive only along a particular route to school.

  Just so he can see his favourite coach park site located along the highway, or have Google Map announce out loud his favourite “bear right (then turn right)”. One day is fine. Two, cute. But everyday?

  Like his bathing routine.

  His insistence on standing naked in the shower waiting for instructions on how to bathe. And all the while humming/singing his favourite cartoon tune, or reciting what he recalls Google Map uttered that morning. At nine years of age, he still needs someone to be in the shower with him to help because he just can’t rub the soap on hard enough or reach places like the back of his shoulders. And if no one is there to supervise and bark out instructions, he will just stand still. Or he will just rub and rub the same few spots on his body over and over again.

  And even when he gets out, he needs constant reminder on thoroughly towelling himself dry, otherwise he will just stand still stark naked, dripping wet, like he was waiting to catch his death of cold.

  I could probably go on and on to list down all the areas that he clearly frustrates the heck out of me, his stay home dadd. I really don’t want to stay home every day of my life if this is what I have to deal with every single time. From homework to road safety awareness to social norms, he is just not responding to our various attempts to help him learn what he must to survive in this world.

  And so there are days when I feel like I just want to wrap my fingers around his neck to shake and throttle him, as though by doing so I can really knock some sense into him and we can finally see some progress.

  I know all too well how ridiculous I sound, but you wouldn’t think so if you were me, living everyday with someone who only wants to move to the beat of his own drum. It’s almost like he’s managed to completely tune me out at times. The things coming out of my mouth are just falling into empty space, making me wonder sometimes if I did actually say anything at all, so clearly unresponsive he is. And I know my son has good listening. He can hear thunder in the distant skies long before any of us, and he can even hear what we’re saying about him even when we’re in the next room from him, and speaking in quiet soft tones.

  But I realise too that this is my lot as Caleb’s parent. Often times I’m so focused on changing his behaviour that, in truth, I’m not really sure if I’m doing it for his own good or for my own preference and convenience. I often suspect it’s the latter. Because this is how we shower, this is how we eat, this is how we choose how long we need to pick our favourite toy. But when you’re dealing with someone like Caleb, you must be ready for a fight every time if he is every kind of stubborn that we experience him to be every day.

  And that’s just who he is. He has his logic, his reason. And the sooner I come to accept that, the sooner I can start to work with him, get his buy-in eventually and let peace be restored in the household.

  But first, I must change. I must recalibrate my expectations and I must give him more time and space to adjust, because he just takes longer than most people. And most people was probably not what God had in mind when He made Caleb.

  Yep, that mind-slammingly hard!

  Posted in Autism, Caleb, Reflections, Stay Home Dad, The Good The Bad & The Ugly, Uncategorized | 0 Comments | Tagged Acceptance, Autism, Caregiving, Disappointments, Family, Fatherhood, Parenting, Society, Spirituality Family Parenting, Stay Home Dad

• Kept Busy from my Simply Tuesdays

  Posted at 3:32 am by Kelbungy, on October 8, 2019

  It was supposed to be my day to retreat away to ponder and blog.

  But as it is I’m finding myself now blogging two days later, having been on the fly as I juggle several things these past 48 hours. Not many would appreciate that being a full-time stay home dad (and son) can really be a juggling act throughout the whole day, everyday. Even though the kids are in school the whole morning, and my mom is at the elder day care centre from 9 to 5, it doesn’t mean that there aren’t bills to pay, forms to fill, applications to submit, and a whole host of other individual and domestic matters to attend to.

  I regret those days in the past when I used to envy others I know of who quit their jobs to live the life of a tai-tai (lady of leisure). Yes, many like me use tai-tai now to describe anyone of either gender who’s not in full-time employment cause it saves time amongst us (familiar with local parlance) when describing to each other someone we know who’s cho bo (doing nothing)!

  Cause chances are high that there’s someone out there now who’s describing me or those like me in exactly the same way. Oh how it hurts now when the shoe’s on the other foot! There is nothing ‘cho bo’ about waking up early every morning to fetch my son to school, housekeeping, replying messages that can come at you from any and every direction; from various government bodies, school teachers, family, friends, ex-colleagues, etc.

  Then when the afternoons arrive, bringing with it the return of my kids from school and my mom from her day care centre, the homework and caregiving routines begin. Making sure the kids stay on track to prepare for spelling tests, exams, and completing the day’s homework (either from their teachers or from us their parents!), before they can have their play time, TV time, reading time, etc. Ensuring my mom takes her meds and gets enough quiet and rest from my noisy boys.

  All these can really take its toll on a person!

  The long and short of it all is that I am worn down and finding it harder and harder to keep up this momentum of blogging twice a week. Worse thing is my writing coach had advised 1.5 pgs (750 words) everyday for five days a week? That just leaves me with two days to rest before the grind starts again!

  So as I push this post out, I think I need a time-out and a re-think of how best I can straddle this. Oh, and to top it all off, I’ve taken on a part-time teaching role starting next week. Which probably means I’m going to be even more tired and less inclined to write, and more inclined to ‘nua’ (laze around) after a hard day’s work.

  Where oh where will I find the time and energy to pursue my writing dreams now?

  Posted in Reflections, The Craft of Writing | 0 Comments | Tagged Autism, Dreams in limbo, Part Time Lecturer, Society, Stay Home Dad, Stay Home Son, Writing

• Life-Work, not Work-Life Harmony

  Posted at 2:21 am by Kelbungy, on October 1, 2019

  Dear Citizen’s Panel for Work-Life Harmony

  Thank you for informing me that I’ve not been picked to join your panel discussions.

  Having seen it, as well as news of the kickoff session last Saturday, I do feel a tinge of disappointment that I wasn’t selected. This despite the fact that participating would have meant giving up full and precious Saturdays over four weeks, although I’m more than happy to, as I believe this issue is long overdue for a citizen’s review!

  Let me first address what I hope to see emerge from the four scheduled sessions. 

  Then I will end off by painting a picture of the future of work and life I desire to see in Singapore.

  What I hope the Panel will discuss

  Firstly, I hope this citizen’s panel will earnestly discuss the dangerous implications of our times now, and how is it that Singapore has evolved to embrace this highly-driven workaholic culture we now have?

  Really. Let’s crack this issue wide open once and for all, warts and all!

  How did we get to this point where we’re now ranked even higher than Japan and South Korea (known for their exacting long work hours) for our long work hours (45.1 hours weekly)?! 

  Is this truly what we want to be renown for?

  I would like to posit here that it is the ruling government’s call all these years since independence that has brought us to this state of affairs. 

  You see, the narrative posed to us for over 50 years (since independence in 1965) by the government has always been along these lines: a small nation like Singapore, with little resources and no hinterland, must stay productive and hardworking for our very survival in this competitive global economy. (It’s still the narrative today by the way)

  But is that really true? Will we really crash and burn if we decide to dictate our own pace of ‘progress’? If we choose to ignore the ‘economic’ numbers pundits have stacked against us (because despite what these number-crunching doomsayers harp constantly upon, the truth is digits don’t paint the full picture)?

  If by ‘survival’, the government means that every Singaporean must relentlessly punch above his/her weight in every job undertaken, then surely it won’t be long before we are headed for a massive burnout! If every worker is driven by the bottom-line, the day won’t be far away when we will sink to the bottom! We will burn out, flat out or cash out of this rat race. Do we really want to see suicide statistics continue to climb up, like it did last year?

  While many would argue there’s no defensible correlation between the increase in work hours and suicide, it’s really not rocket science to at least make the connection that more work hours (“visible” ones spent doing work, and “invisible” ones spent thinking/texting/emailing/calling/agonising about work), mean fewer hours caring for self and family. 

  And we know how that can take its toll on one’s health, marriage and the home, don’t we?

  Let’s not kid ourselves about it and say that “No, can’t you see the great turnout we have for so many family-friendly events and activities in Singapore every weekend?! See? We value family in Singapore.”

  To that I say “No, can’t you see that there are many working hard over the weekends too? Even those attending these events are often there in body, but their minds, fingers and eyeballs are always on their mobile devices clearing work! And let’s not even discuss about the people hard at work behind the scenes driving these endless events!”

  Is this “work-life” balance harmony?

  Let’s really discuss if this is what we want in Singapore.

  Secondly, many employers in Singapore, in particular entrepreneurs and SME founders/bosses, are typically the ones most guilty of plying their workers with endless tasks and hours, making each employee work the job of at least two or more, so as to keep the team lean and the profits rolling in. Ever noticed that most of these employees that are chocking up such long work hours are either foreigners away from home, school interns, fresh grads, singles or DINKS (double income no kids)? Again, not rocket science to see why this is so. 

  Which makes me amaze why the government keeps wondering how best to arrest the annual decline in our TFR (total fertility rate)? 

  Still want to know how? 

  Go talk to these employers! I mean seriously. Go talk to them.

  I suppose in a highly globalized and competitive corporate environment like today’s, it’s hard to blame these bosses for being exacting task masters. After all, if they don’t make it, their company will fold and they have everything to lose.

  So such employers obsess 24/7 over their businesses, and that translates inevitably to pushing workers to be more productive, which in turn translates to longer and longer work hours. It’s not uncommon to see people bringing their work home and continuing to message or email wherever they are, and at all hours of the day and night. Why just last Sunday afternoon I saw in the span of one hour, at least two adults (one male, one female) banging away at their laptops on separate tables in a public food court, and another in a public library (while his 6-year old kid rummages through the books on the shelves alone and unsupervised!).

  Again, let’s not kid ourselves and think that simply showing on paper that a company has adopted flexi-work arrangements immediately means they are work-life harmony friendly. 

  The truth is, there’s more to it than meets the eye! 

  Any employee who actually takes these ‘arrangements’ at face value by leaving work on the dot, taking more remote/telecommuting work options to spend time with family, not responding to bosses’ or colleagues’ messages outside official work hours nor on weekends, not agreeing to take on more work, etc, better be prepared to be labelled a “non team player”, and be bypassed annually when it comes to promotions, bonuses, and salary increments! 

  Or worse. Get the “cold shoulder treatment” by the workaholics in the company, and be “cold-storaged” by the boss, until the atmosphere becomes so tense and unbearable that they are ‘forced’ to resign.

  That unfortunately is the reality in Singapore’s toxic work environment.

  And it needs to change. Yesterday.

  What I hope for the future of work in Singapore

  Now allow me to share what I hope to see for the future of “life-work” balance harmony in Singapore.

  Firstly I hope that we as a collective society (government, employer, employee, dependents) will decide and agree on what set of values should define us as a nation. If the insatiable quest for excellence in every sphere of life is our value set, then there will never be a work-life balance to speak of.

  We just can’t have our cake and eat it too!

  The pursuit of material success and creature comforts will always be at odds with good quality of living, which I equate with good physical, spiritual, emotional and mental health, strong marriages and united families, and graciousness to others.

  Secondly, we need to be prepared to let go of pursuits that are only measured economically, be prepared to live more simply and joyfully, and be available to fellow citizens in need.  I look forward to seeing a more gracious society that cares for those who for one reason or other aren’t able to care for themselves: the children, the elderly, the disabled, the infirmed. This won’t happen if our media and the powers-that-be care only to keep publicising our global rankings in this area of achievement or another. Are we so insecure as to keep blowing our trumpet over one material achievement after another, when we know full well that these successes are temporal and don’t have lasting meaning?

  Thirdly, and one that’s close to my heart, please stop looking down and disparaging men like me who choose family (staying home full-time to care for their loved ones) over career and jobs. When I first went public that I had chosen to be a full-time stay-home dad, there was such an outpouring of “oh what a sacrifice” from friends and family. Why can’t it be seen as just another decision a father chooses to make for his family, and that it’s no big deal? The fact that it garnered so much attention only serves to show how far we still have to go to accept that this is normal, this letting go of career for the sake of family. 

  Why is it such a big deal for fathers, as compared to mothers who decide to stay home full time?

  Give us fathers the confidence and assurance to know that we aren’t perceived as good-for-nothings, softies, incompetents or leeches, preying on the mercy and kindness of family and society for material necessities. But instead, let’s be supportive in kindness and kind, and show these men that they are just as worthy and valuable to society as the movers and shakers in the corporate world. Maybe even more so, since what they gave up shows more personal selflessness than corporate self-centredness.  Unless of course the latter is Singapore’s true value!

  Thank you so much for reading up to this point, and I do hope that my feedback will be considered and incorporated into the collective feedback of the citizen’s panel.

  May the feedback collected at the end of the four sessions accurately capture the sentiments of Singaporeans about work-life balance harmony in Singapore! And provide a life-work harmony solution or two that really can turn the tide around.

  Yours sincerely

  Kelvin

  Posted in Advocacy, Reflections | 0 Comments | Tagged Autism, Economy, Graciousness, Society, Spirituality Family Parenting, Values, Work-life Balance

• “What’s ‘Normal’, Caleb? What’s ‘Normal’, World?”

  Posted at 7:40 am by Kelbungy, on September 28, 2019

  Inspirations can come out of nowhere sometimes. And this was one of those times.

  There she was blow-drying her hair last night, like she does every night after a bath, when my wife suddenly had an inspired thought. She decided to stim (gesticulate randomly) in between blow-drying her hair. At various moments she would suddenly stop, brush her ears repeatedly, flap her arms wildly or slap her thighs loudly, then resume blow-drying her hair. These were a few of the ‘odd’ behaviours Caleb exhibits in front of us almost daily.

  All this was done in full view of Caleb, who was reading at his favourite spot in the house (his parents’ bed), as he always does every Friday and Saturday night.

  Eventually our little friend looked up and started taking notice, his face growing increasingly panicky at what he saw! He began to blurt out a succession of questions, each uttered with more alarm than the last: “Mommy, what are you doing? Mommy, can you don’t copy me? Mommy, can you don’t be like Xuan Ler (his classmate)? Mommy, can you be ‘normal’?”

  And there it was. The word of the day: Normal.

  So what exactly is normal my wife asked him, the point she was subtly trying to bring across to our dear son. In response, he immediately sat up straight on the bed, crossed his legs and kept perfectly still!

  And there it was. The response of the day: Normal.

  It seemed our precious little gift knew what ‘normal’, or (more accurately) what wasn’t normal, looked like.

  Now according to the Oxford dictionary, the word ‘normal’ means “conforming to a standard; usual, typical or expected.”

  Which begs the question: “What is the ‘standard’, the ‘usual’, the ‘typical’, the ‘expected’?” If all that is what it means to be human, then there really isn’t any one ‘standard’, one ‘usual’, one ‘typical’, one ‘expected’ now is there? I mean, just look at the variety of people and behaviours in this crowded world we live in!

  Or is ‘normal’, as Caleb offered in reply to his mommy, sitting up straight, crossing one’s legs and keeping still?

  Let’s first be clear. Caleb IS human. Very much so.

  He breathes in and out through his nose, just like the rest of us. He has all the visible physical features of a human, just like the rest of us. He smiles, laughs, cries, frowns, sneezes, coughs, pees, falls, sleeps just like the rest of us.

  So he’s normal, isn’t he?

  Which means that if he’s stimming, spinning, flapping, echoing unintelligibly or monologuing incessantly as he pretends to be the Google Map voiceover, he’s also just being ‘normal’, albeit his version of standard/usual/typical/expected ‘normal’, right?

  And yet, each time he does any of these, we his parents and caregivers, as well as others who know him, forget that Caleb’s just being ‘normal’, being the unique human God made him out to be. Instead we invariably ask him with increasingly worried tones: “Caleb, what are you doing? Caleb, can you don’t do that? Caleb, can you don’t be like Xuan Ler? Caleb, can you be normal?”

  It’s ironic that while Caleb clearly knows what aren’t considered ‘normal’ for us, we don’t seem to know what are considered ‘normal’ for him!

  Last night, I think my wife was inspired to try a little reverse psychology; to see how Caleb would react when he sees behaviour he exhibits showing up in the neuro-typical people around him as well. Especially people who know him intimately.

  No doubt his mommy wanted to make the point to Caleb that how he behaves often makes us uneasy, uncomfortable. And by extension, the rest of the neuro-typical world uneasy, uncomfortable.

  For me though, I couldn’t help but see just how far we still need to go to understand the world Caleb (and others like him) inhabit. A world where behaviours like stimming, spinning, flapping, monologuing, etc are deemed ‘normal’. A world where expressing oneself in such ways, in the absence of understanding conventional ‘normal’ behaviours to express oneself that are acceptable to society, shouldn’t be disparaged or discriminated against.

  So can we as a society accept these ‘normal’ behaviours from people like Caleb? More importantly, can I as his caregiver and closest kin?

  Or do I draw the proverbial line in the sand, and say to Caleb and his friends that if you behave the way you do, you stay on that side of the line? And if you want to come to this side of the line, then you have to behave the way I do? The way the rest of society does?

  If so, then how does that help inclusion and integration? If a child’s or adult’s disability causes him/her to stim or shout in public involuntarily every now and then (like for eg those with Tourette Syndrome), do we draw the line right away to keep their ‘normal’ from ours?

  Someone once said that if we want our special needs children to ”enter our ‘normal’ world”, we must first “enter their ‘normal’ world”, then gently lead them safely over to ours.

  Was that what my wife did last night? Or has that episode merely reaffirm in Caleb the harsh societal reality that he must leave his world completely in order to be allowed into ours? That his ‘normal’ must surrender to ours because ours is the true ‘normal’?

  Have we caused him more harm than good?

  Posted in Caleb | 0 Comments | Tagged Acceptance, Autism, Inclusion, Society, Spirituality Family Parenting, What is Normal?

• Completely. Utterly. Blown Away!

  Posted at 4:21 am by Kelbungy, on September 24, 2019

  I admit it. I didn’t want to watch Kodi Lee on America’s Got Talent. Yes, I can hear you gasping in shock all the way from here, and I don’t blame you.

  Rest assured. In the end, I did watch him. Finally. Last night. In his debut audition before the AGT judges back in May. And I would have to be completely tone-deaf or a walking dead if I can’t tell from his performance just how incredibly talented he was! How incredulous that a voice so powerful and emotive could actually come from so diminutive and fragile a frame as his. 

  22-year-old Kodi Lee from California certainly didn’t walk up on stage with the cocky confidence of many others before or after him. He didn’t swagger nor sashay his way to the spotlight, the way many a singing sensation would. Because we all know how these things go – it’s ultimately a confidence game, and true talent often takes a backseat in favor of keeping eyeballs glued to the screen with charismatic, good-looking eye candies the world constantly craves for. 

  It’s all about how you hold yourself up in front of a packed auditorium of seasoned audience, not to mention a panel of even more seasoned judges, including the notorious Simon Cowell and his razor-sharp tongue. A tongue that could lacerate any less-than-perfect performer into a defeated messy heap before viewers all over America and the world every week.

  No. Kodi showed no such finesse.

  Instead, he walked gingerly and somewhat unsteadily onto that stage with help from his walking cane and his mom Tina. The world soon learnt from her that Kodi wasn’t just legally blind, he also had autism. A double whammy in any parent’s book! 

  But once the initial surprise and apprehension was over, and Kodi sat down to sing and play Donny Hathaway’s classic “A Song For You” on the piano, you can literally hear the thud-thud sound of chins falling onto the ground all across the auditorium! The guy was musical talent par excellence!! And not since Susan Boyle‘s debut have I seen Simon’s eyes open that wide!

  Unsurprisingly, Kodi went on to win Season 14 of AGT with a rousing duet of Calum Scott’s “You Are The Reason” with award-winning celebrity Leona Lewis.

  So what stopped me before from watching Kodi you ask? And why the change of heart last night?

  Well, to tell you the truth, a part of me never liked to hear of or even see yet another special needs person put on a pedestal for a spell, only to be forgotten later on, as I suspect Kodi and others like him would be. 

  More importantly, to be misunderstood into thinking that this will change things forever for people with autism everywhere, as though his triumph meant that others like him all over the world will now be more accepted, even celebrated wherever they can be found. It’s a mindset change I wrestle daily with as a parent to a special needs son; to have more people understand that having autism doesn’t mean one is of less worth; just a different worth. And that worth doesn’t have to be “AGT-visible” for it to stand on its own merit and be applauded!

  These flitting successes on world stages like AGT’s also reveal absolutely zilch about the day-to-day mundane struggles that special needs families like Tina’s and mine deal with. The daily ‘skirmishes’, from unpleasant therapy and medical appointments to protracted and difficult homework sessions, often go unseen. They are as invisible to the casual observer as my son’s special needs. 

  So what if one makes his mark on the world stage today, like Kodi did? He and the rest of us still have to live on tomorrow. And the day after that. And the day after that. And…

  In fact, as I think about it some more, someone like Kodi actually has a far greater advantage over my Caleb: Kodi is visibly disabled. 

  Caleb isn’t. 

  That means Caleb will be put to a higher standard of ‘accountability’ and performance than the Kodis of this world. That fact alone makes Kodi merely a spokesperson for himself, but not Caleb or anyone else. So let’s not even talk about this feat of achievement by Kodi as a new open highway for others with special needs to be better embraced and accepted by the rest of society. 

  Because it isn’t.

  And that was when I had my change of heart. 

  Since I’ve concluded that it isn’t, why not just sit back, watch Kodi’s performance unencumbered by any bias, and judge his talent on its own merit, divorced of his special needs? Why not just celebrate his singing gift without any of those autism and disability filters everyone else puts on automatically?

  Then I wouldn’t need to be reminded that to be affirmed by this world we live in as a person of worth, especially for persons with special needs like Kodi and Caleb, one must step into such spotlights and win competitions.

  For even if I never see Caleb lift a single trophy in my lifetime, he will always be of infinite and immeasurable worth to me, just for being who he is.  

  And so I finally watched Kodi’s performance last night. 

  As I closed my eyes to listen hard and unbiasedly to him for who he was, I was… completely… utterly…blown away!

  Posted in Caleb, Reflections, Stay Home Dad | 0 Comments | Tagged Achievement, Autism, Society, Spirituality Family Parenting, Talent, True Worth

• Going on 9 to 5

  Posted at 4:03 am by Kelbungy, on September 14, 2019

  Four months from today, Caleb will turn 9. Not exactly a tween yet, but definitely not a pre-schooler either. Yet in the eyes of family, friends and even strangers (if they spend just 5 minutes with him), Caleb will look and behave for all the world like he’s turning 5 instead of 9!

  The truth is that Caleb’s autism and developmental challenges have meant that he’s still generally very ‘kiddish’ in his mannerisms. And yes, he still needs help now from us for his basic daily living skills. These can literally run the “Whole 9-yards”: brushing his teeth, cleaning up after his toilette, feeding him during meal times, or reminding him to cross the road with a careful eye for oncoming traffic. Just to name a few!

  In short, he’s in many ways no different from a 5 year old pre-schooler.

  It doesn’t help that well-meaning but clueless extended family members and friends, both those who are conscious of his diagnosis and those who aren’t, help reinforce his childish demeanour in how they relate to him. Most of these adults have never dealt with special needs kids, and don’t know enough the importance of challenging these kids to behave more like their peers than their former pre-school pals. And so oftentimes, these same adults end up treating Caleb exactly the way they would treat young, helpless babies and small kids. Some even justify that, precisely because Caleb has autism, he is to be treated differently from others.

  I reckon since he’s still a tad small built for someone his age, all the mollycoddling he still gets now seem fine and dandy. However, I doubt it’ll be so when he grows taller and bigger in the next couple of years (and he will). Because these same people who treat him now like he’s 5, will wake up one day two years down the road and suddenly realise that “hey how come Caleb is still acting like a pre-schooler ah?”, as if up until that point they were never aware that anything was amiss.

  And when that happens, guess who they will be looking to for answers and immediate solutions, or simply pointing fingers at behind our backs (if not in front of us)?! 

  Yep, you guessed it! Caleb’s parents, which of course includes yours truly, the stay-home dad!! I can already hear the whispers: “So how is Kelvin’s staying home full-time helping Caleb. No really, how?”

  I can almost imagine the myriad of questions that will spew forth: “Do you need to bring Caleb for more check-ups?” “What?! He’s still wearing diapers at night?! Why?” “Why does he still drool and wear bibs?” “How come he’s not playing well with the other kids his age and doesn’t seem to have any friends his age outside of school?” “Do you want to consider trying alternative medicine?” And on and on and on the questions will roll. 

  It would almost seem as if the years so far that these adults have spent relating to him as though he was a pre-schooler stuck in a time-warp, had no part whatsoever to play in helping Caleb develop properly. 

  Now I’m not saying that I’m doing a stand-up job right now. On some days, I still interact with him like he was still my little kindie kid, wrestling him playfully to the ground, baby-talking to him, helping him to towel dry after a bath. In all of these I am well aware I need to adjust my methods to be more age-appropriate, though I firmly believe that even parents of neuro-typical kids often forget and end up treating their kids like they were still babies, even when they’re well into their teens! At least that’s how I comfort myself cos I do have a neuro-typical Jaedon that I ‘baby’ every now and then!

  But at least I’ve got self-awareness going for me, and will therefore continue to self-correct. That is more than I can say for others who aren’t Caleb’s parents and who don’t spend time daily with him like I do. Despite being well-meaning in most cases (even though they are really well-meaning based more on what they think is right, not what’s actually good for Caleb), the fact remains that they aren’t the ones left “holding the baby” when the crunch and testing comes, and the world asks the obvious question: “Why isn’t Caleb acting his age?”

  Just to be clear: I’m not blaming others. I’m really not. Because Caleb isn’t ultimately the responsibility of anyone else but his parents, who are his immediate and most important caregivers.

  What I am saying though is that the adage “it takes a village to raise a child” is all too true. For those of you who have to take urgent leave from work cos granny suddenly fell ill and can’t watch your kids today, you know what I mean!

  And just to be clear, I’m not saying that I can change people and change the world. I know that I can only change myself. And I will, and have been (since leaving full-time employment earlier this year).

  But sometimes, when the going gets really tough, I just want the people around us to cut Caleb and I some slack. 

  Help. Don’t Hinder. Ok? And if you really really want to but don’t know how, just ask me.

  Better yet, ask Caleb.

  Posted in Autism, Caleb | 0 Comments | Tagged Autism, Caregiving, Friendship, Helping, Society, Spirituality Family Parenting

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