My Life With T

Wheels in Motion

When summers fly, slow down to soak it all in.

During camp pickup on Tuesday, I told T I had a surprise. “We’re biking together tonight, because I got a bike too!”

T’s face lit up with a smile and he shared the news with his camp teacher and friends excitedly.

The hubby and I are frugal but this was a worthwhile splurge, because it means more quality time as a family.

Summers are so short and this one is just flying by.

The last two summers, I focused a lot on school practice – borrowing books and worksheets from T’s teacher that I worked on with T, in the hopes of reducing summer learning slide.

If it’s one thing I learned this past year, life is short, especially childhood, and I want to focus instead on building memories with and for T.

Part of that means accepting my wheels don’t always have to spin – and it’s ok to slow down.

This isn’t always easy to do as a special needs parent, as I’m always aware of the possibility of T falling behind as he gets older – and this creates pressure that feels overwhelming at times.

I’m taking an academic lite approach this summer: We try to read a picture book every night and I picked out light-hearted books from the library that T has been getting a kick out of reading.

And also mix in books with good messages.

We do a bit of math practice on weekends – to reinforce learnings from the last year – and if he’s curious about something, like black holes or how big the universe is, we look it up online.

We’re also keeping his swim lessons up and he’s making steady progress.

Most importantly, it’s about having fun and soaking up summer – like our recent Elora and Killarney roadtrips.

After dinner last night, T zipped through his reading practice and off we went on our bikes; the hubby’s bike comes next week, so it was just us two.

We first reviewed the rules of biking together – stay together, stay on the right side of the street, slow down and stop at every intersection.

It was a joy to bike around with T. The hour flew by as we explored all the side streets in our neighbourhood that we hadn’t explored before.

T has become confident with biking and I do see him paying attention to his safety.

I remember when I became a new parent and T was not even walking yet, I looked forward to doing things together like camping, roadtrips, outdoor hikes, watching horror movies.

Biking was never on this list – as it wasn’t something the hubby and I ever did.

But now, I’m so thankful we established this new routine – and the hubby and I are already looking up bike trails, near and far, that we can explore over the summer.

Because of FASD, life as a parent was not quite what I expected it to be; thanks to T, it is also more than I had ever hoped for it to be.

Return to Killarney

The hubby, T and I first visited Killarney, a beautiful and painting-like part of Ontario during our Northern Ontario roadtrip in Summer 2020 and it lifted our spirits during the pandemic.

So it was wonderful to return, thanks to my Aunt who organized a getaway – and we packed a lot in from Friday afternoon to this Sunday morning.

A Saturday morning 2.5 km hike through the woods that had wild blueberry bushes along the trail, which we picked and nibbled on.

My cousin – T’s Uncle J – and I took T out canoeing on both days.

T and I swam at the resort pool and we all sat by the scenic docks where T enjoyed throwing rocks in the water.

He made friends with a boy and they spent time stalking and antagonizing a water snake.

Our group consisted of us three, my Aunt, T’s Uncle J, his partner and their dog, and my cousin, who has Down syndrome.

I’m blessed to have extended family – this one in particular, who I grew up with since I was T’s age – who is welcoming of T.

There were several challenging moments during the weekend – tantrums, rude language, perseverating over my cousin’s dog, who gets anxious around T’s hyper energy.

On Friday night, as we were eating dinner by the dock, we repeatedly told T to not play with a rope used to tie to boats. He didn’t listen and he slipped off the edge and feel into the cold water.

So the hubby and I let him sit in his cold wet clothes while we finished our dinner.

This morning, T knocked through four “STFUs” within the first 10 minutes of getting up, thankfully in our cabin with just the hubby and I – and I told him to stay inside to calm down before joining the group for breakfast in my aunt’s cabin.

While they don’t fully understand FASD, they ask questions now instead of offering advice (one of my pet peeves) – although my Aunt did call him a rude child when he was having a fit; a deserved and fair comment.

They also empathize because of my cousin, the other T, who also has a disability.

FASD and Down syndrome are night and day – my cousin is calm, whereas T is a firecracker loose in a store filled with TNT – but the need for support, advocacy, empathy and patience are similar.

T is also caring of my cousin T, often watching out for her and giving her hugs.

We always budget double the recommended time for a hike, because my cousin T is slow, whereas T zips ahead then circles back to get us.

These moments remind me every disability has their strengths and challenges – and to be thankful for our many blessings.

As we were packing up our cars this morning, my aunt remarked that we show a lot of patience with T and I said we’re not always so patient and there are many moments when we lose our shit.

I then said the trick is to do our best to focus on the positives – and there are many – because otherwise, you lose yourself in the weeds.

And it was a very lovely weekend.

My favorite memory was on Saturday night, the hubby and I borrowed two bikes from the resort and took T on his bike for a nearly hour-long sunset ride, zipping through quiet country roads and streets.

It was the first time we biked as a family – the first in years the hubby and I biked – and the first time T had so much freedom of space to explore.

He listened well to our instructions to always slow down and stop at every intersection – and no accidents or busted lips this time.

I later told the hubby that long past the disregulated moments, these happy memories are what we will all remember fondly.

Lavender Haze

One of my favourite day trips was a pre pandemic weekend visit to the beautiful family-run Terre Bleu Lavender Farm when T was 4.

I find the farm grounds very calming and enjoying lavender ice cream on a summer day is a treat.

Lavender is known for its calming qualities. You may have seen this meme often posted on parenting forums. Yup, that’s me too.

Finding calm moments for self care is so important as a parent of a child with FASD – and it’s vital to take a pause from time to time and focus on compassion and kindness with oneself.

That was our goal with our recent Canada Day weekend trip to Elora – to get lost in slow, unwinding, hazy calm.

I find small towns like Elora, a 90-minute drive from Toronto, so charming and idyllic.

I often get lost in a hazy daydream thinking about how T would be better suited to small town life – less busy, things move slower, lots of outdoor space to run around and explore.

The hubby and I plan to retire in a small town one day. But that’s another daydream.

After tubing down the gorge, we headed to downtown Elora. We were famished and enjoyed a late lunch at a pub. I had yummy fish and chips – and T had a burger, woohoo.

No family outing would be complete without ice cream for dessert…

… and the obligatory encounter with a cute dog.

We went on a post meal walk through the beautiful downtown – with its charming patios…

… stone buildings …

… lovely old homes …

… cheeky independent book stores …

… walking trails …

… that lead to lovely views of nature.

One of the highlights of our visit was stopping by the Terre Bleu shop, which recently opened in downtown Elora.

The store sold all kinds of lavender-infused products, from oils to candles, to spices, honey and the yummy lavender ice cream!

Ever savy with marketing, the shop also had a lovely lavender photo wall and the visitors to the store took plenty of photos with it.

The sign above the door to the photo op really spoke to me: “Look on every exit as being an entrance somewhere else.”

The hubby, T and I have been dealing with, so to speak, revolving doors lately – either ourselves or helping T process losses – and this lavender-infused moment was a nice grounding moment for me.

A reminder that rushing rivers always lead to calm water.

Embracing His Inner Dennis the Menace

Half a year after we shared his FASD diagnosis with T, it has clicked with him.

On a recent morning, T wanted to play with one of our two cats, which is often a hit or miss event.

T stayed gentle and our cat finally went up to T to smell his hand then let T pet him.

T was thrilled. We praised him for being calm and gentle. Then T said, “I’m never calm and gentle, because my mom drank alcohol when I was a baby.”

That comment blew my mind, because it came out of nowhere.

We had told T about his FASD diagnosis last December and this was the first time he has brought it up with me. The hubby later told me T had brought it up with him a few days prior.

I was thrilled by this, because it’s a huge step in helping T piece together why things in his days happen the way that they do.

I reminded T his mother stopped drinking when she learned she was pregnant, because she would not do anything to harm him.

The hubby and I reminded T that while his disability is a reason for why he behaves the way he does, it’s not an excuse he can fall back on and that we have to work together to turn it into a superpower – and reminded him of the many gains he made by the end of Grade 2.

In the last year, T has embodied Dennis the Menace for better or for worse.

Dennis the Menace is a famous cartoon character created in the 1950s by Hank Ketchum, inspired by his son Dennis.

I remember watching this cartoon – see above – and amused by this boy who was mischievous, driving his parents and neighbours crazy, yet a good soul at his core.

So it was a pleasant surprise when I learned at an adoption workshop, prior to when T entered our lives, that Dennis was inspired by a real life boy who had an invisible disability, likely FASD.

I mused about this connection in a March 2020 post and it continues to be one of my most-read posts; it’s the first result when you search for “FASD Dennis the Menace” as I bet other caregivers are as intrigued by this story as I am.

I often use Dennis the Menace to explain to those unfamiliar with raising a child with FASD, because it succinctly paints a picture of a child who is endlessly energetic, inadvertently getting into mischief, and has a gift of driving his parents up the wall but still endears himself into their hearts.

I’ve never watched the 1993 live action film but my goodness does this kid ever remind me of T.

Like Dennis the Menace, there are many moments when T can be so challenging – like having a full blown meltdown at the park yesterday, because I refused to play with him after he kept speaking quite rudely to me.

But like Dennis the Menace, which my mom has referred to him on occasion as over the years, there is something about T that is inherently lovable that you want to root for him, no matter how much he’s pissing you off.

I remind myself it’s a disability – his behaviours are symptoms of a brain injury – and while it’s not an excuse, it’s a reason to try our best to stay patient and that T is good at his core.

Last Friday night, T and I went for a bike ride after dinner. T stopped his bike and hopped off when he came across a beautiful neighbourhood cat.

They were instantly smitten with each other and I let T enjoy this bonding moment with the cat, while three neighbours watched over them.

“I think you’re gonna need to get him another cat,” one of the neighbors said.

“And I think you’re out of your damn mind,” I wanted to say. But I didn’t. I just smiled and enjoyed this calm and gentle moment.

When Training Wheels Come Off

To kick off summer, T scored his first bloody busted upper lip after a biking accident.

But let’s rewind a week to the morning of the same day T marched in the Pride parade for the first time – when the hubby took him out on his bike.

The bike was a gift from his Ama, my mom, when he was 3. Last summer, he showed a one-day interest in trying to figure it out. Then moved on.

So a year later, it was a big deal when the training wheels came off.

T was reluctant at first, struggling as we all do with balance, but once he overcame his anxiety and figured it out, he quickly enjoyed it!

He even came inside the house looking for me so he could proudly tell me.

Every day since, T’s been going out on his bike, practicing.

We even took it with us to our overnight trip to Elora. Look at him zip here at Elora Quarry. We could not feel more proud.

As parents of a child with FASD, an invisible disability, we serve as his ongoing training wheels.

We’re his external brain to help navigate the world around him – advocating, educating, raising awareness, translating.

Thankfully, these training wheels also exist in community – like community supports, therapists – and in school, they’re the IEPs and most importantly, the Child Youth Workers and teachers.

The goal is to always move T towards independence, when we’re able to take off the wheels, but also understand that wheels may need to go back and stay on in certain contextes.

This is hardest part of the FASD parenting journey – it feel like our wheels are constantly spinning or the rubber is burnt thin but we still gotta keep cycling.

But it’s also incredibly rewarding when we experience the payoffs through T’s eyes.

Despite the ups and downs of the school year – some of which was beyond anyone’s control – T ended off on a high, with many successes, including an A on his report card (for science) and improvements across all subjects including B+ for gym, music and art, subjects he struggled with participating in during previous years.

We are so proud of him and most importantly, he is proud of himself.

And the areas he still needs to improve on – like emotional regulation, collaboration – we’ll keep the training wheels on… and burning rubber. 😆🤣

It’s important to teach T to get back up when he falls, figuratively and literally.

On Monday night, as I was preparing dinner, the hubby texted me to prepare wet paper towels to meet T at the door because he had fallen off his bike and was bleeding a lot.

In T’s words, “It looked like a murder scene!”

It wasn’t quite as harrowing as that, but there was a lot of blood on the pavement and T’s upper lip was busted up.

The hubby said T was hesitant to go back on the bike after his accident but after some gentle encouragement, he got back on like a pro.

And we told him we’re very proud that he did that!

He will continue to have many more falls, figurative and literal, and it’s all about getting back up and learning to avoid those falls in the future.

And to have a sense of humour about things.

T’s lips became quite puffy and I told him he looked like a Kardashian.

He didn’t find the joke as funny as I did.

Tubing Down Elora Gorge

Rushing river leads to calm water. As a parent of a neurodiverse child, I wholeheartedly believe this.

We celebrated Canada Day, and the start of the second half of the year, by tubing down Elora Gorge.

It’s family tradition to kick off summer break with a weekend adventure. This year, we picked Elora, a charming town 90 minutes from Toronto.

Tickets for tubing can be purchased from the Grand River Conservation Area three days in advance.

We showed T videos of other people tubing down the gorge, so he knew what to expect.

We explained that unlike a lazy river, this was a real river and the dangers are real. So he had to wear a helmet and lifejacket and stay seated and connected to one parent at all times.

We woke up early and arrived when the gates opened at 10 am to avoid the crowds – the crowd quadrupled on our way out three hours later.

It was a 15-minute walk from the registration area to the launch site and T was a trooper holding his tube… until he wasn’t. 😆

Once we arrived at the launch point, everyone’s excitement was palatable.

I made sure the hubby and T got in ok first then realized the river doesn’t wait. Oops. Bye hubby and T!

But we were quickly reunited.

We had a blast – the entire journey took about an hour and a half. 😊

Tubing down the gorge was a good reminder that when the current gets rough, resist the instinct to fight against it and to go with the flow.

Rushing river always leads to calm water.

In the stillness, look up…

… and around…

… and enjoy the view.

When the waves pick up again, hang onto each other and ride them out once more.

We are all headed towards the same finish line.

When we get to the inevitable end, take a moment to look back at the journey you experienced.

You’ll notice that what you feel the most are awe, amazement and gratitude.

Love Leads the Way

T marched in his first Pride parade and he did amazing!

I’m part of my work’s Pride staff group and it was wonderful to march with colleagues, family and friends for the first time since the pandemic.

It was important to march, because of increased attacks towards the 2SLGBTQ+ community.

It is horrifying to see the vitriol and hate in the US and Canadians are not naive enough to think that we’re immune to this.

T joining us was a last minute decision. I left the house in the early afternoon to join colleagues to prep our materials.

I felt very iffy about him joining us, because the parade can be overwhelming – with a crowd of over a million, loud music, hot weather, long walking. If T became disregulated, it’d be a nightmare.

On the other hand, I always wished for T to march and to not take for granted our liberties that are now under attack – and to explain to T that celebration and advocacy go hand in hand.

By mid afternoon, the hubby confirmed they were coming and I suggested he show T photos from previous marches and to explain what T would be doing, so he could be best prepared.

They arrived as our group entered the parade.

And you know what, this little guy did amazing.

He kept up with the group, waved his rainbow flag, gave out Mardi Gras beads and made it to the end of the nearly 3 km and 1.5 hour walk.

I chuckled when a group of parade spectators waved T down and wanted him to give them his mini rainbow flag. T gave them a high five instead and went on his merry way.

By the end of the parade, my colleagues and I had to do some cleanup and T became quite hangry.

So I apologized and ditched my peers so we could feed our tired and hungry child.

But it was minor blip in an otherwise perfect day.

When love leads the way, amazing things happen – and I will treasure this day forever.

Helpful Nutrition Tips for Raising Children with FASD

Garbage in, garbage out. How we nourish our body extends to our mind and spirit.

With thanks to our parenting support group, the hubby and I attended a webinar with a nutritionist that works with individuals with FASD.

Our 8.5 year old T is characteristically a picky eater – or as I learned through this webinar, a neurodiverse-appropriate term is “selective eater.”

The nutritionist summarized a few factors that affect eating habits for individuals with FASD – and I bolded the traits we see in T:

Sensory integration with food
Selective eating
Oral – poor swallowing or oral aversion
Fine and gross motor challenges with eating
Eating in excess is called Hyperphagia
Not eating enough
Not finishing meals
Medication can increase or decrease appetite

The nutritionist also reviewed general healthy diet guidelines:

Eat rainbow of colours for fiber, nutrients and antioxidants
Balanced meal of fiber, fat and protein
Focus on whole, unprocessed foods
Avoid additives, preservatives, food dyes, sugar
Blood sugar crashes can be the reason for anger and behaviours
Keep hydrating

Then she provided tips for caregivers:

Keep a food journal
Allow time to finish meals and allow messiness if it helps
Avoid distraction during mealtimes
Have emergency snacks to prevent blood sugar crashes
Include children in meal planning
Explore different ways to prepare food
Eating out
Foods high in omega 3, choline; antioxidant rich foods
Exercise
Emergency snacks

T has come a long way with his nutritional habits.

A few months ago, out of the blue, he decided he wanted to eat oatmeal for breakfast, which we pair with yogurt then his multivitamins.

This is a huge win as it replaced his sugary cereal.

Lunch and dinner can still be a struggle. We often cycle through the same 3-4 starch rich meals – but we try not to stress about it. If he wants pancakes for dinner, pancakes it is.

Fruit is a staple but veggies are avoided – even cussed at. 🤣

Multivitamins have been helpful and we’ve been giving him “Smarty Pants” gummies, which have choline, for a few years now – along with a separate Vitamin D gummy.

Meat is a challenge, but he gets protein through yogurt, milk and cheese – and McDonald’s chicken nuggets and hamburgers and Taco Bell if you consider that meat! 🤣

T recently ate not one, but two of these meaty beauties, in one sitting.

Recently, T wanted to try BBQ burgers and ate two meaty prime rib burgers from the supermarket – PC brand is the best. This was a huge win.

As the person who does the groceries, I’ve cut out sugary snacks, like Oreos, as well as juice, weaning T off them slowly, and that’s a win.

We recently took away the tablet during mealtimes so T can focus on his meal – and heaven forbid, socialize with us too. 😆

Perhaps an important ingredient is doing our best to role model healthy eating habits.

The hubby and I have been transparent with T about our health journey – and we openly celebrate the incremental wins together.

Since starting his diet in January, the hubby has reached 50% of his weight loss goal – and T tells the hubby he’s sad he won’t be able to cuddle with him when he’s not fat anymore. 🤣

I also have ongoing conversations with T about the importance of exercise – and why gym is part of my ongoing routine.

Slowly but surely, T will get where he needs to be.

As T’s fortune cookie from our recent Fathers Day lunch at Asian Legend – pictured at top – said: “You will make many changes before settling down happily.”

Yummy bowl of fish maw soup from our Fathers Day lunch at Asian Legend. One of the few unique food items T will actually eat.

Padam Padam

Life begins at 40 – and what makes your heart beat with new purpose?

Growing up, 40 seemed ancient and yet, I still feel like a kid in a candy store when I view and think about certain things in life.

Being a dad keeps my mind young and ages my body in triple time.

There are benefits about being older… I mean, wiser – because you take each step with your cumulative life experience and lessons.

I’m more decisive and don’t agonize over every detail as much as I used to.

Exercising a good work ethic is still important – and I expect it from others – but I focus now on working smarter, not harder.

I appreciate the opportunities to give back – despite my very limited time – including enjoying coaching others.

Work life balance is a top priority. If it’s one thing the pandemic years has reinforced, it’s to enjoy life and each other while we still can.

For the most part, I’m enjoying my 40s. It isn’t without challenges – like raising a child with an invisible disability.

When I think about the next phase of life, I am more excited than daunted about what lies ahead.

I hope I never stop wanting to grow and challenge myself – because I feel the best years are still ahead.

I look at one of my muses, Kylie Minogue, who in her mid 50s is having a charts resurgence with her infectiously joyous new song, Padam Padam.

I find the narrative around her perceived comeback interesting – as if artists (and women) of a certain age should just lie down and die.

I find the middle stage of life fascinating, because we can take everything we’ve spent years honing and put it to creatively good use with more precision, decisiveness and confidence.

But I also keep it real. Life these days is centered around T – all my free time is consumed by T.

Most days, I feel deep gratitude for this; some days, I desperately want a break.

But on this Fathers Day weekend, I look at our little kid and think to myself how lucky did we get when the universe matched the hubby and I with him as his parents.

What makes your heart beat and go Padam Padam?

Flowers

On a beautiful Spring Sunday afternoon, T brought flowers for his Auntie.

A few weeks prior, the memorial garden staff let me know her memorial plaque had been installed and with it, a vase for flowers.

At 8.5 years old, T has experienced a lot of adversity and loss the past year.

When I watched him sit on the grass next to the grave, looking at her plaque, I thought back to three years ago, when T first asked me about death.

I didn’t know how to answer it at the time and little did I know that T would get a first-hand experience in the near future.

Re-reading this post, I would still approach it the same way: with healthy openness and honesty.

Despite living with FASD, T is insightful and perceptive and, at his core, very caring; he can handle the truth in age appropriate doses.

Over the past while, when he wanted to role play a funeral, we would do so; when he wanted to talk about his Auntie as an angel sitting on a cloud, I’d listen.

We try to convey the message that death is a part of life and that’s why we have to enjoy life and appreciate each other while we can.

We let T know, a while back, the hubby and I have a plot in the same memorial garden.

We bought it a decade ago, after my dad passed. With our wills also done, it gives us peace of mind that we have things planned for T.

We also make it clear to him that we don’t want to move in anytime soon, but that it’s good to be prepared as parents.

After we visited my sister, we headed over to our plot on the other side of the garden.

I noticed during this visit that our future neighbour was born in 1883 and passed away 70 years ago!

“I’m going to be with you too,” T said.

“Oh no, this is for Daddy and I,” I said.

Then T got upset and said we were being rude.

I clarified that when he becomes a grownup one day, he will probably have his own family and may want to be with them instead of us.

“Well, they can all go in with us!” He said.

Sprint to the Finish

Friday was Track and Field Day. T crushed and won his races, including the 1500m and 800m.

Earlier in the week, on Tuesday, the hubby, T and I participated in the final session of the SNAP program, which we participated in to build skills to make better choices and co-regulate with T when moments get tough.

While the program added to our full schedules, we are thankful for the 13-week journey together.

We learned and relearned great tips and the tools are making a difference – such as the sticker chart we’re using to help T get through routines he struggles with, like getting ready for school.

Parents often roll their eyes at sticker charts. But it’s working for us. If it takes rewarding T with up to $5 a week to get through routines, it’s a steal!

It’s not about perfection for us but rather, it’s about focusing on steady progress forward.

The SNAP staff have been wonderful – and so have the other families – and the wrap up party was a nice way to celebrate us making it to the end.

There were cupcakes, chips, completion certificates, speeches and a visit from SNAP the Dragon.

Each child got a gift bag that included a stuffed SNAP the Dragon.

As the weather gets warmer, I’m feeling astounded the school year is nearing its end.

It’s been a year of ups and downs but I’m hopeful we will have a strong finish.

We’re so thankful for the supports we’ve had, including his CYW who has made such a difference and helped T made so many gains.

The excitement for Track and Field Day was palatable.

In the days leading up to Friday, and the morning of when I did school drop off, we reminded T it’s important that he tries his best and to have fun.

We reminded him to pace himself in the runs – to not burn out in the beginning, to take a steady pace, and then charge to the finish.

Trying hurdles for the first time. Reminded me of when I tried hurdles for the first time, also in Grade 2.

His CYW texted us excited photo and video updates throughout the day.

It was heart-filling to see T give every activity a good try, from shotput to hurdles and long jump.

He exceeded expectations when he won all his races, including the 800m and 1500m runs.

My heart felt warm hearing his CYW proudly cheering him on as he neared each finish line.

I could see the look of pride on T’s face as he made it to the end.

Life is often a series of starts, restarts, and endings – and with each end, a new beginning.

On this day, it was about strong finishes – a reminder of the many gifts this awesome boy has. I hope he sees and feels it too – and I hope others in his school do as well.

I hope T soaks in this positive energy and confidence boost – and that they springboard him to wonderful new beginnings.

The hubby aptly dressed T in his sporty Canada shirt.

Painting Faces

The unfiltered innocence of a child is to be cherished.

Life teaches us from an early age to put on a mask to navigate different scenarios and relationships – familial, friendships, professional, social.

It’s not about deception but rather to demonstrate emotional intelligence – including respect, collegiality, trust building.

Sometimes, it is a necessity when dealing with difficult news or challenging situations.

I cherish the relationships that allow me to truly let my guard down.

I feel that children are true blessings, because they haven’t been moulded by life experiences just yet.

Kids like our T, who are often impulsive in action and thought, amuse me at times with how filter free they are.

Last Friday night during daycare pickup, the staff told me about an incident that had happened between T and two sibling students.

When T and I were in the playground after, I was approached by the students’ father and I knew this was not going to be a pleasant conversation.

I won’t get into the specifics other than to say that both sides had a role to play – but I put on my listening face, because the father was escalated and I was looking to deescalate.

The father labeled T a danger, neglecting to mention the situation started when his child threw sand at T’s face, albeit unintentionally and yes, T could’ve responded with more grace, but I explained that he has a disability and impulsivity and regulating emotions are not his forte.

The situation really bothered me. I will be the first person to admit T is not without challenges. However, the dad took it too far with his judgmental response. Such is life for people with invisible disabilities.

But I refused to let it ruin our long weekend, especially after the amazing week T had in school.

So I did my best – and it was far from perfect later that evening! – to put on a happy face.

We had a relaxing and fun weekend planned, including the first school birthday party that T was invited to since the pandemic.

T was super excited since getting the invite two weeks ago and his CYW, the hubby and I prepped T in the days leading up to it.

We made sure to arrive early so T could calmly ease his way into the event.

T was shy at first but warmed up. He enjoyed playing chase and balloon tag with his classmates and other young guests.

The hosts organized an amazing party, which included a face painting station, an hour-long magic show and a delicious spread of Indian food.

T was reluctant to try the face painting at first but by the end of the second hour, he was having so much fun that he approached the painter and lined up and waited patiently for his turn.

He got a cute Minion on his forehead.

The hubby and I felt so proud of T for overcoming his shyness to have a great time.

We texted photos to his CYW who texted back to say that she was proud of T too.

During the magic show, T sat on the carpet in the front row and was fully engaged and participating.

The magician asked the kids if they believed in magic and as I looked at T’s face of unfiltered joy, I said to myself, “Yes I do.”

The Golden Spark

A single weed in a field of yellow can be magical.

It’s that time in Spring when dandelions create a magical golden carpet on park fields.

T and I enjoyed a nice walk on Mothers Day. The sun was shining and it was warm enough for T-shirts, shorts and crocs.

“Oh my God, stop taking stupid pictures,” T screamed, because he wanted to play with me.

Seeing the futility in his whining, he asked if he could borrow my phone. Then he snapped this delightful photo.

Then he yanked up more dandelions.

Like many others, I enjoy looking at NASA photos of fascinating outer space places like Mars.

But I also think living on Mars would lose its novelty quickly.

I bet Martians would find dandelion fields enchanting – and if they end up being hostile, allergies will kill them off.

It really is about perspective – and one thing that helps ground me is gratitude.

I often start my day with prayer and give thanks for things I’m grateful for. This often clears the fog in my head, redirects stress and gives a boost of energy to step into my day.

To be clear, it’s not about ignoring challenges or pretending things are all ok.

It’s about choosing a mindset on how to deal with the good, bad and everything in between.

When raising a neurodiverse child, it’s an invitation to take a deep breath.

To reframe a challenge as an opportunity to grow.

To try differently not harder.

To see the blessings when it’s easier to focus on the disability.

To find laughter in the absurdity.

And I’d like to share a few things from the past week that I feel grateful for:

For T’s CYW, who is a Godsend. Thanks to her, T is growing academically and socially – and finding the confidence to participate more in class.

For the bright colours blooming in our garden.

For the announcement of new Kylie Minogue music on its way. Already in love with the look and sound of her upcoming era.

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For moments when T wants to learn a new skill and help make his lunch.

For this delicious bowl of spicy beef and tendon noodle soup that I enjoyed at a Taiwanese restaurant, where we took Ma and my aunt for dinner to celebrate Mothers’ Day.

I am thankful for the moments – it’s often the small moments – that remind me that when you view ordinary things from a different lens, a single weed can be the golden spark that lights up the dark.

Forever Young

Dinosaurs go extinct when they lose touch with their inner child.

Raising T, a child with endless energy and a disability called FASD, can feel like I’m aging in double time – but it keeps me young.

Even when I’m exhausted by T, I am amused by his imagination, as he turns our home into his creative playground – one day a fort, another day a race track or a McDonald’s drive thru.

Playing with T energizes my mind and brings a different perspective to other areas of my life, be it personal or work.

I recently reflected about the importance of not losing touch with our inner child – and how we can keep that spirit alive.

In my early 40s, I still love my comics, childhood shows, horror movies, and video games.

I’ve tried with limited success to pass onto T my childhood interests – such as the Power Rangers. Despite the dinosaur themes, T has shown no interest so far. 😆

Meeting Amy Jo Johnson, the original Pink Power Ranger, in 2014. She also lives in Toronto and after losing a bet with a costar, she showed up in costume at Dundas Square to play her guitar.

It’s about building time for self care, including carving out alone time for yourself.

It’s about staying curious about what’s current and being open to trying things out.

It’s about doing our best to not let hardships chip away at our childlike optimism – while staying grounded and pragmatic.

Meeting the late Jason David Frank, who played the popular Green Power Ranger, Tommy, at Fan Expo in 2018. I can’t wait to take T to his first fan convention event. He will surely love it.

Two weekends ago, the hubby and I introduced T to the original Jurassic Park movie, which came out 30 years ago.

I remember watching it around T’s age and finding it scary – so this would be T’s first horror movie.

He loved it! Although we watched it over two days, after he stopped it during the intense T-Rex scene and chastised us, “Did you want to give me nightmares!?” 😆

After he finished the movie, we played Everest, this time we were taking a drive through Jurassic Park and were being attacked by the T-Rex.

Did you want to guess who roleplayed as the loud and destructive T-Rex?

At the Royal Ontario Museum last summer.

Being T’s parent teaches me so much about resiliency, especially when things feel hard, exhausting or overwhelming.

One of T’s strengths is his ability to bounce back from things – every day is a new day.

Whether that’s because he’s a child or because of his disability, it’s a good lesson for me to stay the course and keep the faith.

This past Friday, we received a lovely email from his teacher. Each student created a video related to a reading and writing assignment about dinosaurs.

This was T’s work. He did awesome! Hearing his sweet voice reading, and the growth in his skills, was a wonderful way to start the weekend!

These moments are what keep me going.

Hard Goodbyes

One of the hardest lessons in life is learning to say goodbye to good friends.

Two weeks ago, a bomb dropped in the middle of T’s day when he learned that his best friend – his one good friend at school – was moving and that his last day would be in two days that Friday.

His CYW texted us the heads up in the middle of our work day when she learned the news and we strategized on how tell T.

He ended up being told by his CYW and principal. My one request was to make it clear that his friend moving was not a result of anything T did.

The suddenness of the news shocked T and we felt his immediate despair. He cried himself to sleep leading up to the Friday.

As a parent, you absorb every high and low your child goes through – you experience their emotions like osmosis – and this was heartbreaking.

T is still processing the recent death of his Aunt and to layer this on top felt cruel.

There was nothing we could do other than to be there with him, listen and validate, and allow him to feel all his feels.

The hubby had the great idea to encourage T to draw a goodbye card for his friend, which he did with great enthusiasm the morning before.

The CYW also worked with the friend’s teacher to ensure they got to spend extra time together leading up to and on the last day.

On the big day, we all learned his friend would be staying for another week – 5 extra days – as his mother wanted him to end the month in one school and start fresh in May.

This helped soften the sudden blow and while we knew it was only delaying the inevitable, it gave T the gift of extra time to process this loss.

It is surreal to watch a child process loss; they rarely tell you but rather show you how they feel.

There were and are very challenging moments – irritability, anger, name calling, screaming – leading up to and after the eventual last day.

It is very hard not to take any of it personally – especially when I get the brunt of it rather than the hubby – but I remind myself this is not about me.

Easier said than done – trust me. There are moments when I lose my patience with T’s rudeness.

On the last day, last Friday, we were blessed with an activity the school had already planned – a visit by the community police.

This provided T with a much-needed distraction and he enjoyed petting the police dog and sitting in the driver’s seat of his car.

His CYW told us T was all over the place that day and understandably so – and he was in quite the foul mood at daycare after school.

That afternoon, T got to skip a period of class to attend his friend’s goodbye party.

His CYW sent us a photo she took of T and his friend sharing a goodbye hug.

I will not share this photo, as it truly felt like a sacred special moment – but the look of sadness and love on T’s face, his eyes closed and hands wrapped tightly around his friend, is equally heartbreaking and heart filling.

A few weeks ago, T coloured this page from an activity book he got from our recent trip to Mexico. I circled (digitally) in red the two boys that T decided would be him and his friend playing by the pool.

This experience with T made me reflect on the revolving doors of life – and it made me think about two polar opposite and extreme reactions.

On one end, we can hang on and try not to let go of loved ones and on the other, we can close ourselves off from others so we protect ourselves from experiencing eventual loss and pain.

As with everything in life, the truth really lies in the gradient in between.

The one constant thing in life is change. We say hello and goodbye to family, friends, colleagues, pets, homes.

We do our best to stay in touch but also recognize that some goodbyes are final.

So all we can do is to live in the moment, treasure each other while we can, and have the memories when a chapter in our lives close.

This is a hard message for an 8-year-old boy – one that struggles with abstract concepts and emotional regulation – to understand right now.

So this story continues.

The past weekend was gray and rain filled. T said the skies were crying because of his friend.

This kid certainly has my flair for the dramatics.

But Spring is in the air. The tulips are sprouting in our garden and our cherry tree (pictured at top) is in bloom. I’m going to enjoy them for the week or so days we get them every year.

Nature provides a wonderful mirror to reflect on our daily walks in life.

Unchained from the Rhythm

By recently plugging away from screentime, we’re finding more ways to connect as a family.

It all started a few weeks ago when T, in a disregulated fit, hurled his first F-bomb at the hubby.

We grounded him from his tablet for a week; which got extended into two.

I remember telling the hubby what the heck he got us into, because giving T his tablet was a way for us to get time to ourselves. Grounding him was also punishing us! 😆

So yes, it was a hard initial few days but we were pleasantly surprised by how good it’s been for all of us since we reduced T’s screentime.

He was calmer, less irritable, and he filled the time with play. And yes, it was more taxing on us, but the extra time together was wonderful.

The biggest surprise was T really took on drawing as a hobby, spending lots of time working quietly on his sketches.

I love watching him get creative – and he’s shown so much improvement in his drawing; fine motor skills is something the school and the Occupational Therapist assigned to work with him had been practicing with him.

So we dedicated a wall in our living and dining room as T’s gallery space. I love watching it slowly fill up – and so does T.

Maybe it’s a placebo effect or the novelty of drawing – but I like the correlated effect of reduced screen time on T.

So as T’s punishment period neared its end, the hubby and I decided that we’d use the return of T’s tablet as an opportunity to set new ground rules:

No tablet during school days
No tablet during meals
Only 1 hour of tablet each in the morning and in the afternoon; no tablet in the evening
Immediate timeout from the tablet for using inappropriate language

T whined about it at first, but we explained that we were making these changes, because T has shown such positive changes and that we would use the freed up time for other fun activities, such as more outdoor play and drawing.

He’s been receptive to the changes so far.

And we’re glad – because frankly, we could all unplug from the rhythm of screens, doom scrolling, social media, virtual worlds more and connect more with those in front of us and nature.

Last December, as a Christmas gift to myself, I finally deleted my Twitter after 14 years.

I’ve had enough of the doom scrolling, incivility and toxicity that has infected social media.

I only keep my Facebook to stay connected with family and friends – and don’t have other accounts.

And I don’t miss it one bit.

I often wonder about the digital world that T will grow up in – the innovations and transformations to the way we communicate and connect.

I hope that T will thrive in it safely and successfully; that it’d be just one aspect of his life, rather than something he’s consumed by.

The teen years will be interesting for sure.

All we can do is focus on the here and now and help develop good digital habits and nourish his days with moments unchained from the rhythm.

Meet the Parents

When the hubby and my parents first met each other 20 years ago, it started quite comically.

A few seconds into meeting, Ma started talking about the time she and her siblings drove by New Brunswick, where my in laws live, and didn’t think much of it because she didn’t see any flowers.

It was not meant in a bad way, just her usual Asian frankness. Over the years, my father in law would egg her on by sending photos of flowers to share with Ma. 😆

All jokes aside, we’ve been blessed to have loving parents who get along.

Whenever my in laws visited, we would get together with my parents – taking them to Chinese restaurants to try something different.

I remember when a dimsum server was wheeling beef balls around, my mother in law muttered, “That’s not what I think it is, is it?” 😆

Eight years ago, before T joined our family, Ma joined the hubby and I for our summer roadtrip to visit my in-laws at their cottage in New Brunswick.

The hubby’s parents took Ma and us on a boat ride to fish for mackerel. We all had fun!

I’m glad the hubby got to know my Pa before he passed away.

I chuckle thinking about the first time the hubby slept over, when I still lived with my parents. Pa opened the door and the first thing he said was the hubby was sleeping in my sister’s room. 😂

But the hubby won him over by always coming over with a lottery ticket for him. That charmer!

I often wish Pa lived long enough to meet T – the two of them would’ve adored each other, in the same way our remaining parents adore T and he adores them.

His Ama, Grammy and Grandad didn’t first grasp his disability, but they’ve all been open to learn and most importantly, they love T unconditionally despite his challenging moments.

On Tuesday, T walked in the house after school and asked, “Why does it smell different?”

I replied, “Because it’s clean.” 🤣

The hubby’s parents were arriving that night to stay for a few days – en route to home after snowbirding in the States.

We spent the weekend cleaning the house top to bottom. Even T helped – because he was excited to see his Grammy and Grandad, his first time since last summer.

It was therapeutic cleaning our guest room, as it was the first time someone was staying in there after my sister lived with us last fall.

As a special needs and working parent, housework becomes lower priority despite our best efforts.

We could’ve made a new cat with the fur and dust we vacuumed up from our guest room!

Early Tuesday night, T ran screaming excitedly in our bedroom, “They’re here, they’re here!”

T ran to the door to give them a big welcome hug.

It was nice to have them stay with us. The hubby was able to take the rest of the week off work but I was not, as I had just taken March Break off. But it was nice to give them alone time together.

T enjoyed playing with his grandparents at night and it was very helpful to have their help with making dinner for us while they were here.

We took T out of his after school program on Friday so he could spend more time with his grandparents.

We took them to Dragon Legend for dinner, so they could try out a unique buffet experience. Ma was supposed to join but felt under the weather.

After dinner, we went for a sunset walk around the neighbourhood.

The following Saturday morning, we all got up very early to wish T’s grandparents off as they left early for their long drive home.

T waved enthusiastically from our front steps as the car drove off, screaming “I love you!” at the top of his lungs.

Being Everest

Pretending to be a Siberian husky to my 8-year-old is something I never thought I’d treasure.

Any parent to a young child will likely be familiar with Paw Patrol, a cartoon about six dogs saving the day at Adventure Bay.

T has outgrown this show, but one character has stuck with him: Everest, a Siberian husky that first appeared in Season 2.

A day often doesn’t go by without him asking me, “Papa, let’s play Everest.”

Playing Everest is T’s code for “let’s hang out.”

It often involves pretend play, stuffed pets and building a fort. Frequently, he incorporates things he’s thinking about – like his Aunt’s recent death – into the play.

It could also be simply just us sitting next to each other and talking.

It amuses me to think of T imagining me being a husky. He often corrects me when I break character and says I’m a dog, not a human.

Playing Everest could take place indoors or outdoors at the park or playground.

We live in an old 1960s home and since moving in four years ago, we’re slowly saving up to renovate.

In the meantime, our unfurnished living room is an empty canvas for T to bring to life with his infectious creativity and endless imagination.

I once read that kids don’t ask you to talk about things; instead, they ask you to play with them. And this has always stuck with me.

I know T’s days are filled with ups and downs at school, on the bus and at daycare – and it is often painful for me think of about this.

So I try my best to make time to be Everest, even when I myself feel drained and need time to myself.

I treasure these moments, because I know childhood flies by and it won’t always be like this.

I especially value these moments, because these are the moments in each day when T is at his purest, kindest and joyful best.

It balances the moments when he can be moody or disregulated.

At a recent team building exercise at work, my colleague led a session about the importance of reflecting on the things that bring us joy.

Each person was asked to talk about one thing that brings them joy.

I chose being Everest and when I spoke about for the brief minute I had, I felt joy and gratitude.

As the Paw Patrol would often say, “No job too big, no pup too small…”

The Magical Yet

I didn’t get my driver’s license until my 30s and after failing the final road test twice.

When I finally got it, it was a good reminder that some things that may seem out of reach at first may not always stay that way.

As a parent of a child with FASD, I often think and blog about growth mindset.

The program coordinator at SNAP, which the hubby, T and I are participating in this Spring, shared a great picture book called “The Magical Yet” that speaks about growth mindset.

It reminds me to focus on effort not perfection, on the long term not a moment in time, and on growing not being static.

Just because you can’t do it yet, doesn’t mean you can’t one day.

I’m also a pragmatist. For me, it’s important to temper this message with the reality that there are many things that each of us will simply not able to be good at – neurodiverse or not – and that’s ok.

We tell T the most important thing to do is to have an open mind, give everything a good try, and have fun.

For me, cooking was something I was never good at growing up but I now enjoy as a hobby and therapy – and it’s been fun to grow my skills in this area.

Mapo tofu is one my fave dishes to make. Seemed hard before but hooray for online videos.

For T, participation in school is often a challenge.

Thanks to support from his CYW, and solid effort from T himself, he’s made positive gains this year.

In his daily communications book, we now often see updates about him raising his hand.

Last Thursday, our long weekend got off to a great start when his CYW texted us a heartwarming video of him in dance class.

She said that dance may be in his future and based on how awesome he was, she may be on to something!

I feel proud about the gains he’s making with reading, printing, and math.

Two and even three digit addition, with carrying, seemed daunting to try with him a year ago.

T has also shown more interest in drawing – and I love how he sits quietly by the dining table with his sketchpad while I make dinner.

Reminds me of how I entertained myself as a kid on Friday evenings while Pa worked.

Ocean Spray did not pay for this post. I was just trying to take a discrete photo. 😆

I love seeing the greater detail in his art and more importantly, him having fun with it.

When we have our challenging moments with T, I remind myself about his many gains and to focus on the magical yet.

Fighting Spirit

Body, mind, spirit. They are all connected and nourishing them means a stronger you.

Self care is as essential as oxygen to daily life as a parent of a child with FASD.

Last fall and the first few weeks of the new year drained my batteries and emptied my reserves.

I did not have the time nor energy to apply my go-to recharge strategies, such as exercise.

Every adversity in life passes then provides stillness for reflection and recalibration.

The recent losses in our family provided an important wake-up call about what truly matters and to nourish your body, mind and spirit.

I’ve always been mindful of my diet and exercise, and this year, the hubby’s come onboard the health train too.

The good news, as we’re finding, is it takes just a few tweaks to start seeing and feeling gains.

A Healthy Start to the Day

I got the hubby to switch to oatmeal with me – cutting out sugary cereal.

I bought ground flax seed and hemp seed from the bulk store and add a spoonful of joylessness to each breakfast.

We match this high-fiber meal with yogurt and banana – and twice a week, an added treat of smoked salmon.

Cut Back But Not Cut Out Carbs

We love rice and pasta so it’s not realistic to cut them out completely but we do carb less meals every other day.

We’ve been using the Air Fryer, a Christmas gift from my cousin, which helps increase protein-rich meals and reduce time for cleanup.

Make Better Decisions About Food

I do the groceries, so I decide what comes home.

With the hubby’s buy-in, I cut out our one weekly treat (candy or pop for him; chips for me). We also cut out juice and increased milk (I drink sugar free soy milk).

Maximizing Sleep and Outdoor Time

I’m a stickler for 8-9 hours of sleep – and 9-10 for T – and the hubby is making more effort to sleep more than his usual 6-7 hours.

Getting fresh air is important. We enjoyed a nice Spring walk with my family at Port Credit on Easter Sunday (above).

Exercise, Exercise, Exercise

I struggled a lot in the fall, because I could not find time or energy to go to the gym, as my late sister, through no fault of her own, kept me up at night as she struggled with declining health.

I try to alternate between cardio and weights every other day – with one rest day a week – as a healthy heart and body are important, especially now that I’m in my 40s.

Exercising regularly is one area I’m still trying to get the hubby to commit to, but he’ll get there!

Easter is about egg hunts and bunny fun – it is also about renewal and resilience.

T woke up on Sunday to find a surprise from the Easter Bunny. I love that he still believes in this.

We then had lunch at my Uncle’s home – and my Aunt made grilled lambchops; always a treat!

We then went for a walk at Port Credit lakeshore – and the fresh air and sunshine were soul soothing.

Since we made the few changes to our diet, fitness and sleep routines, the hubby’s reached 35% of his weight loss goal and I feel mostly energized again.

The daily life of a special needs parents can batter you down, so it is especially important for me to take care of my health, as I want to be as available and present for T as possible.

We’ve also used the recent changes as an opportunity to remind T of the importance of making healthy decisions and teamwork.

Life with T often provides humorous reminders about staying grounded and not to take things too seriously.

When I recently praised the hubby after a recent weigh in, I asked T if he was proud of Daddy.

T said, “Not yet, he’s still fat!”

But his warm smile told us otherwise.

After a long winter, the flowers are ready to emerge and bloom under the sun once again.