What It’s Like Parenting A Child With Autism

Kelvin Seah’s second child was diagnosed with autism when almost 7, while coming to the end of pre-school and on the verge of transitioning into primary school. We asked Kelvin how his family adapted and changed to accommodate the new reality they had been confronted with.

Q: Hi Kelvin! Thank you for coming on to share your experiences a second time. First off, can you tell us a little about how your son was diagnosed with Autism Spectrum Disorder (ASD)? What led to his diagnosis?

A: My son Caleb was born in January 2011. He wasn’t the easiest of babies to care for, especially during his first year. He had acid reflux for most of that year which meant he neither ate nor drank well. He also cried a lot and didn’t sleep well, which meant that his parents didn’t either! He often had breath-holding spells when he cried too much, and sometimes his face would turn blue as a result. It would often appear like he had fainted! When he was 5 months old, he actually had a mini “fit” and fainted while we were shopping at Marina Square, and we had to rush him to KK Hospital where he then stayed for four nights, subjected to various tests to ascertain the cause. None were found.

Looking back, these incidents invariably set us up to expect the unexpected with this child. And he didn’t disappoint! He was developmentally slower compared to his older sibling when he was a toddler. He wasn’t very verbal right up to age 2 and he also took longer to master walking. At around 2, he developed a fixation with spinning objects incessantly, especially round ones. He also continued to drool and wet his bed well into his pre-school years, and so a bib (plus a diaper every night) is still part and parcel of his “gear” today so to speak!

Did the doctors who diagnosed your son give you a crash course in how to raise a child with autism, or did you learn most of what you know now on your own?

No such crash course exists in Singapore. It’s essentially a diagnosis that is pronounced by clinical/child psychologists, not doctors. Though they can offer general advice and schedule periodic (annually or bi-annually) follow-up appointments to track a child’s progress, the responsibility of identifying and using suitable intervention techniques on a day-to-day basis must still fall squarely on the shoulders of parents like myself. That is the reality, simply because since every special needs child is unique, there isn’t a one-size-fits-all technique or crash course to suit every parent and/or child. Since parents are the ones in closest contact with their kids, it stands to reason that parents play the biggest role in helping their kids with special needs.

What do you know now about autism that you didn’t know before?

I didn’t have much knowledge about autism prior to having Caleb’s diagnosis. But once his diagnosis was confirmed, my wife and I started to research actively. Of course we also had to go through a “grieving process”, individually and as a couple. This is because when one has a special needs child, the initial reaction is always one of shock and disbelief, followed by sorrow and oftentimes denial. In worst case scenarios, there’s blaming and quarrels over how best to proceed. With autism, major life adjustments will need to be negotiated, including what specific and immediate help the child will need to manage his special needs, what schools or therapies he should attend, how our lifestyles will need to be adjusted to accommodate the child better, etc. The list is just too long to itemise here, but safe to say that parents with new/recent diagnosis of this nature must be mentally and emotionally prepared to deal with the huge change and upheaval to their lives.

Those who choose to deny and refuse to upend their lives to adjust to these changes are short-changing their kid’s future! This is because, early and intentional intervention has so far proven to be the best safeguard against real life challenges for special needs kids growing up into adulthood and the real world.

How did life change after your son was diagnosed with autism? Were there activities you and the rest of your family stopped doing because of his diagnosis? Were there any activities you picked up?

As said earlier, lots of things had to be re-looked at, from education to day-by-day intervention and activities. While we still do stuff like most families, i.e. go shopping, sight-seeing, taking part in outdoor play or events that are family-friendly (like SSO [Singapore Symphony Orchestra] performances at the Botanic Gardens or family fiestas and carnivals), we also have to carve out time for (speech, occupational, etc) therapy appointments and sessions. We also do stuff at home that helps with his motor skills development and drooling, on top of the usual school homework and other school-related stuff like packing bags for occasional field trips, signing approval forms for this and that, etc.

Did your plans or hopes for your son’s future change?

To a large extent, his diagnosis did make it very clear to us that Caleb will need more help growing up in a society where people with special needs form a minority (although that is gradually changing as there’s now an upward trend with more people young and old being diagnosed with special needs). Things that the majority in society take for granted like how to earn a living, find a life partner, etc will now require more planning and thought for us, since his life journey won’t exactly be typical in light of his special circumstances. Also, the ultimate worry is as to whether he’s able to continue on to live an independent and fruitful life when his parents are dead and buried. These are unavoidable realities that we agonise over and will continue to agonise over in the years ahead.

What is a regular day for your autistic child like?

During school term time, mornings will be spent in school. Then it’s back home by half past one for lunch followed by a bath and some self-play time. This will then be followed by homework (if none from school, then my wife and I will usually prepare some simple English, Math or drawing exercises for him), and home occupational therapy (OT) time. OT at home will usually take the form of arm muscle strengthening exercises like “wheelbarrows”, as well as fine motor skill activities like inserting coins into a piggy bank with a tiny opening. There will also be outdoor frisbee and football play time if the weather is good before dinner and a half-hour TV time. Post dinner will be followed by baths, clearing up the room of messy toys before settling down for some reading time before he goes to bed.

What do you regularly do to help him grow and thrive?

Whenever we can, we encourage him to read and learn new things, through books and exposure to outdoor events or indoor stage performances of different kinds. These help open up his world to new sensations and experiences that will hopefully expand his capacity to embrace diversity and not stick merely to the few things he likes, as it’s typical for most kids with autism (as in they only like a few things). We also don’t agree with giving our kids (including my son with autism) too much screen time as we subscribe to research that proves over-exposure to screens daily alters the brain structure negatively.

Which three toys/books/shows/educational materials does he enjoy the most, and what is it about them he enjoys?

Caleb loves Awbie (an iPad-enabled coding game from the Osmo series), his Duplo set of construction pieces as well as his collection of cooking and superhero toys. He loves the colourful images on the iPad screen that respond when he assembles the code pieces, and the opportunity to build skyscrapers and be a pretend chef or superhero. Other than Awbie (which we restrict him to playing for just 30mins once a week), the rest he gets to play for up to an hour nearly everyday when he has his own play time.

Which three toys/books/shows/educational materials does he want nothing to do with, and what is it about them he dislikes?

He dislikes long-form reading materials with minimal or no pictures. He’s not fond of balloons as he’s always afraid they might suddenly burst (he’s sensitive to sudden loud sounds). He also doesn’t take well to live shows/films that have large crowds, loud sounds and pyrotechnics (like live band concerts), or darker themes and treatment (like “Kubo and The Two Strings”) .

Which place in Singapore does he enjoy the most, and why? And which place does he dislike the most?

He loves the downtown skyline, especially that of Marina Bay Sands and the office buildings at Raffles Place. His favourite vantage point to watch these would be at the promenade beside Esplanade—Theatres on the Bay. He likes unique architecture and their shapes and silhouettes/lines.

What is a bad day for your autistic child like and what do you usually do to help him (and yourself) get through those difficult moments?

That would be any day he throws a tantrum or has a meltdown because he didn’t get what he wanted. No different from other kids I suppose, but with him, it can take a lot longer than most to calm down. I remember one Saturday afternoon his tantrum was so bad we had to physically restrain him. And as he grows bigger, that can prove a huge challenge! But thankfully he doesn’t really have many such days and generally once he calms down, he’s alright. The key to managing is to stay with him throughout the tantrum or meltdown to ensure he doesn’t accidentally harm himself by tripping over, or banging into furniture.

What about a good day? What is that like for him (and yourself) and what, from your experience, usually enables that to happen?

When he gets plenty of time to do the things he loves. That usually comes as a “reward” after he’s done what he’s supposed to do like homework, etc. Of course the “rewarding method” doesn’t always work, and it shouldn’t be the only way kids get to do what they want. Cos after a while, it becomes too “forced” and doesn’t really help the child see that doing stuff like homework and occupational therapies is also worthwhile and deserving of their time.

What do you wish more neurotypical adults knew about children with autism?

Many times co-morbidity exists in children with autism. That means that apart from autism, they will also have other conditions and challenges such as attention deficit, stimming (i.e. wildly flapping their arms), and acute sensibilities related to one or more of the 5 senses. In my son’s case, sounds and noises in the background can be too loud for his hearing to bear e.g. fireworks, thunder, furniture/construction drilling or hand-dryers being used in public toilets. So it’s important for any adult to know that if you have met a kid with autism, that’s just one kid you’ve met. He/she doesn’t represent all kids with autism cos no one kid’s autism traits are exactly like another’s, so don’t generalise even though you might be tempted to.

But perhaps top of the list for me as to what adults should know is that autism is a life-long and invisible disability. There are a few schools of thought which assert that autism is “curable” but insufficient evidence exists to support such claims. Neurotypical adults need to pause for a minute each time they encounter “odd” behaviours displayed in public by seemingly “normal-looking” kids or adults, and ask themselves before reacting if this person might have autism or some similar disability. That might explain any meltdowns or temper tantrums displayed. Try to show understanding or offer to help if possible.

But most of all, don’t stare in disapproval or disparage the parents/caregivers for failing to discipline the kid or the adult for his/her own inability to self-regulate. They’re doing the best they can, and the last thing we should do is cast judgment without knowing the full context of what’s really going on. This is counter-intuitive unfortunately, as human nature (especially in many parts of Asia with our more reserved and conservative history and disposition) is, by default, judgmental. But it begins with awareness, which when exercised long enough, can lead one to be more accepting and ultimately more inclusive.

Following from the earlier point, we as a society need to acknowledge, accept and even embrace the reality that people come in all shapes and sizes, and that “different” doesn’t always mean “less”. I like what A.J. Liebling once said: “Cynicism is often the shamefaced product of inexperience”. Everyone should step out of their comfort zone once in a while to experience and encounter people different from us. Everyone should show a little kindness, a little empathy and a little helpfulness more often. All these can go a long way to help make special needs and disabled kids/adults feel included. They too can positively contribute to society if given half a chance so let’s give these special folks that chance!

What do you wish more neurotypical children knew about children with autism?

That having a friend in school who acts or behaves differently from the rest is no reason to make fun of or bully that kid. These “special” kids just have different ways of interacting with the world, and if we just take a bit of trouble to understand and accept them (and render help if needed), we may be rewarded with a really fun playmate, and a precious/loyal friend for life.

What’s the best advice you’ve been given with regards to parenting a child with autism, and what is the worst?

Best: The best one I heard recently is that when it comes to choosing a school to best help the child learn, the question isn’t whether that should be a mainstream or special needs school. Rather, the question should be which learning environment at the point of consideration is the one this child will best learn and develop in.

Another advice that proved really helpful was taking deep breaths during tense moments. When things with my kid go out of hand, that’s the time to take several deep breaths, counting slowly to 10 each time. I’ve tried it, and it really does help “bring down the blood pressure”!

Worst: Any of the following useless advice (or similar) that essentially says: “Oh your kid’ll be alright…”, with no clear explanation as to how this person knows that for a fact. Or “…everything will work out fine”, without defining what that “work out fine” looks like. Or “don’t worry too much”, even though we all know that suppressing and ignoring any genuine feeling is rarely helpful in the long run (actually, in my humble opinion, worrying isn’t a bad thing if it leads to concrete and fruitful action that will help a child). In short, any advice given superfluously because the speaker actually wants to cover up his/her embarrassment of not being genuinely interested or lacking knowledge about what to do is just plain unhelpful. Better just to listen attentively, and say nothing.

Lastly, what advice do you have for parents whose child has only just been diagnosed with autism?

Grieving is a given. And since grieving is an absolutely necessary, normal and often iterative/non-linear process (you will invariably oscillate over time between grief and action), don’t resist it. I’m speaking especially to fathers, who typically bottle up their grief, sometimes without even realising it! It’s more than okay (and I dare say even critical) to embrace the grief and to weep. It will help you move along in the process towards affirmative action that will help your child have as meaningful and fruitful a life as possible.

Begin to increase your engagement with your child, and prioritise your daily time to include either more quality and quantity time spent with him/her, or more time to investigate/research more about his/her condition, and what possible intervention methods can help. And of course to apportion time to intervene; don’t just leave it to therapists, domestic helpers or teachers! Know that there’re no short cuts and cookie-cutter methods that will work, but the committed involvement of a parent is the most important ingredient. This is because every intervention method must be tweaked to suit your child, as no two autism children have exactly the same symptoms. Hence, never “outsource” everything to “experts” because the parent is the true expert of his/her own child and his/her needs.

Very important: treasure your child as a special gift from God, and love him/her unconditionally, no matter how things pan out in his/her life journey, and no matter what relatives, friends and society say, especially if what they say is negative and unhelpful. Along the way, rope in the neurotypical sibling too (if there’s one or more), and let him/her know that you love them just as much too, and how their role as a support and fellow caregiver to the special need sibling is very important for the family to enjoy many good years together. The neurotypical sibling, who isn’t envious but feels secure in knowing that his/her needs are also being well cared for by the parents, can prove a formidable ally in helping your special needs kid develop well.

But most of all, don’t lose the marriage! Both parents need to stay united in this journey, and to take time away regularly to connect in order to keep the sanity and sanctity of the marriage intact. Your marriage is a non-negotiable anchor your child needs every step of the way. Take time to “date” each other regularly too, but also take time to do stuff individually that you love (self-care), so you can return to helping your child with a rested mind and renewed resolve and rigour.

Kelvin is now a full-time stay-home dad who lectures part-time occasionally and is working on more intervention sessions in the form of art and music therapy for his son. You may follow up on his son’s progress at his blog, kelvinsmusings.home.blog or share your own experience with raising autistic children using the comment box below.

Other Answers by Kelvin Seah:
Why I Became A Stay-At-Home Dad, and How

Photographs courtesy and copyright of Kelvin Seah. Interviewer: Sy
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