Playing the Cards You’re Dealt

Focusing on what you can control in challenging situations can lead to positive outcomes.

When I was in high school, I loved to play a card game called Big 2. Also called Chinese Poker, it has similar game play as poker; 2 is the highest card, followed by Ace, King, Queen, Jack then 10 to 3.

I will never forget one game with 3 friends when my hand of 13 cards had no power card and my highest card was a 10. I played with what I had and surprised myself with a win.

I thought about this game while I watched last week’s episode of the sitcom Abbott Elementary; the teachers set up a temporary school at a shuttered mall because their school closed due to an unexpected ruptured furnace.

In this imaginative start to a continuing story arc, the teachers turned an awful predicament into a magical situation for the kids. I mean, who wouldn’t love the idea of a mall school?!

Radical acceptance recognizes that while pain is part of life, by accepting the facts of reality, it can avoid turning pain into suffering.

I learned this term last fall and it describes how I try to approach life as a special needs caregiver.

There are facts I can’t control – FASD is lifelong; T has challenges with regulation, executive functioning, impulsivity and focus; judgment from others; T losing his longstanding CYW support.

I can focus on the cards in my hands: T’s many strengths; the champions within his school and our community; my ability to advocate and speak up.

I’m speaking from my lived experience and recognize that every experience is different.

Grieving is part of my journey. I experience sadness, disappointment, frustration, anger and worry when my house of cards comes tumbling down through setbacks and challenges.

I try to not get stuck in these moments and focus on what I can control. It allows me to move forward.

T learning to play “Nine Squares” with Grammy and Grandad. He won the first three games! 😂

Last Spring, T’s teacher let us know he was behind in his reading comprehension and was assessed at a Grade 2 level in his Grade 4 year.

I felt all those lovely feelings of I’m not doing enough.

The hubby and I looked into a tutor for T and Ms Karen has been a godsend.

She started T on chapter books last summer and yesterday, T finished the 20th and final book in the Bad Guys series, ahead of his March Break goal.

Ms Karen gave him a gift and told him he’s her first student to get a reward for finishing a reading goal.

Considering he wasn’t a reader a year ago, and still needs encouragement to do so, we’re very proud of T for reaching his milestone! 💕

There are many other things we still need to work on with and for T – the cards in our figurative hand that don’t come across as the strong cards.

But we’ll hopefully get there with persistence, patience, creativity and humour.

Guiding a Neurodiverse Child through the Anxious Generation

My overall focus for the new year is health and wellbeing.

This extends to T, who moves to middle school this fall, the first step towards adolescence.

A parent’s worry never ends and mine is exacerbated by his FASD diagnosis.

Research shows that adolescents with FASD are at high risk of negative peer influence, impulsive behaviours and mental health challenges such as anxiety and depression.

I get triggered when incidents occur.

T is having a good year at school. But we’ve also had challenges, including the loss of his longstanding CYW (which I’ll detail in a later post).

The schoolyard is host to challenging interactions – some instigated towards T, some by him.

Before Christmas break, T was sent to the principal’s office for kicking a kid and when the principal spoke with him, T had negative self talk and said, “I have no friends, because I’m a jerk.”

These moments crush my heart as a parent. I allow myself to process the complex emotions. Then I focus on things I can control.

T has friends and peers enjoy playing with him. I’ve seen this myself and other adults have shared this.

But self esteem and self perception are inner conversations and battles that caregivers are often not privy to but should be attuned to.

Over Christmas break, I started to read sociologist Jonathan Haidt’s 2024 book, “The Anxious Generation: How the Great Rewiring of Childhood is Causing an Epidemic of Mental Illness.”

Cheerful read, I know. 😂 But it’s a topic of interest and importance; personally as a caregiver and professionally in my work in AI and digital literacy.

Haidt argues that phone-based childhood – and access to social media and virtual elseworlds – has contributed to a rise in mental health issues in adolescence, including anxiety, depression and self harm.

He calls for four reforms that support a healthier childhood in the digital age:

  1. No smartphones before high school.
  2. No social media before 16.
  3. Phone free schools.
  4. Far more unsupervised play and childhood independence.

Mental wellbeing is a journey

We had a quiet New Year’s Eve at home with hotpot. Selective eater T had macaroni. 😊

I don’t make specific New Year’s resolutions, because it causes stress and pressure.

I do have broad goals and wishes for each year – and good health and wellbeing for my family is at the top of this year’s list.

I’m aware that wellbeing is a process – of consistency and practice, sorting through the noise and finding things that work for your context, and being gentle with oneself when you stumble.

One of the best decisions we made last year was removing tablet use from T – which has significantly reduced his moodiness and disregulation at home and in public.

This is consistent with Haidt’s findings.

As T enters adolescence, I know there’ll be increased pressure to give him a phone. It’s something we’re going to resist.

We maximize opportunities for physical activity and connection – like swim or soccer lessons, family hikes or playing together, one of T’s favourite pastime with me, his “Everest.”

As T gets older, we try and give more unstructured time – like biking by himself or leaving him to his own whims, device free, at home.

Before the holidays, T started to meet with a psychologist that works with neurodiverse children. She is FASD aware and her research focuses on children and social connection.

We did two sessions in December and will meet monthly moving forward.

She was referred by a trusted peer and I’m very thankful that my work benefits cover this service.

I let the psychologist know our priority is to help T build emotional resilience – as he enters and journeys through adolescence.

It’s too early to know whether this will take flight. If it’s one thing I know in this caregiver journey is that there will always be more questions than answers, but it’s important to keep seeking answers and to try and try again.

Hotpot at home was a nice way to ease into 2026!

The Season of Connection

If I told you I hate Christmas, you would understand.

Christmas 2020: Ma was in the hospital after suffering a stroke. It was the pandemic winter, no vaccines, only one visitor allowed. I visited her daily, stressed out I was going to get her sick or that I was going to get COVID and bring it home.

Christmas 2022: After having Ma over for lunch, we took my sister, who had terminal cancer, to the hospital. She passed away four days later.

Christmas 2023: In the early hours of the day, I booked a last minute flight to the Philippines to be with Ma in the hospital. She was suffering from grief and didn’t want to live. She passed away two weeks later; seven weeks after my close friend, Jenny, passed away after a battle with cancer.

But I don’t hate Christmas. I love what the season means for our 10-year-old and to experience the wonder of the season through T’s eyes.

The past few years have made me value the true meaning of Christmas: connecting with loved ones.

The first weekend of school break, we met up with T’s foster family for bowling and lunch. It’s lovely to see the bond still strongly present between T, his foster parents and brother.

On Christmas Eve, we had dinner at my uncle’s and I noticed how much smaller the party was. I felt my mom’s presence, as if she was still in the living room couch, dozing off as she often did.

T’s favourite Uncle J kept him company, including showing T my uncle’s guitar – pictured at top.

I noted to myself the party size was going to become even smaller the next few years – and to enjoy each other while we can.

I emailed Jenny’s mom a Christmas greeting, as the holidays are hard for those grieving loved ones, and she asked if I could send her photos of Jenny. It made me sad to think about her loss but also made me happy to fulfill her request.

A few days later, we had my uncle’s family over for lunch at our home.

This year, more than others, I’m acutely aware of the gift of time spent together over material things.

I’m looking forward to catching up with friends during my time off work, while T is in daycare or back at school.

For my team at work, in lieu of the usual gift card, I took them out for a holiday dinner – as we are often so busy at work that getting to enjoy a meal together is wonderful.

For my school friends, I made a donation to the Surrey Place, a charity near and dear to my heart, in lieu of cards and chocolate – which my calorie conscious friends often complain about. 😂

But there’s still one person for whom opening presents are something to look forward to.

On Christmas morning, T’s school alarm woke us up early.

Watching T open the gifts from us, his grandparents, our family and friends, his tutor and CYW, and “Santa” felt soul-nourishing.

The part of me that didn’t grow up with gifts felt that T was being spoiled but I also knew this was fleeting and to enjoy his childhood.

After opening gifts, T had chocolate Whoppers for breakfast with TV, the hubby curled up with his gift, the novel Heated Rivalry, and I went back to bed and slept till 3:30 in the afternoon.

I could not have asked for a more relaxing holiday season and I feel thankful for the moments of connection with loved ones, T and myself.

I hope you all enjoyed a wonderful Christmas and holidays as well. 🎄💕

A Moment to Shine

T co-emceed his school’s holiday concert on Thursday evening and did a great job speaking and performing in front of 200 guests.

His teacher let us know the week before of this role and we were thrilled for him!

She said he was doing a great job and asked us to practice with him. He didn’t know who Dolly Parton was nor how to pronounce her name.

I reassured T’s teacher that he’s the son of two gay men. He’ll know who Dolly Parton is.

On the morning of the concert, I gave T a hug before I left for the office. He was having his breakfast and he said he was worried.

It was quite endearing to hear him express nervousness and I reassured him that he was going to be great.

“You would not have been asked to be emcee if your teachers didn’t believe you could do it,” I said.

I arrived at school early to ensure I was near the gym door. Before the show started, there was a large crowd and I felt like I was at a Black Friday sale waiting for the doors to open.

Thankfully, the hubby and I got a seat in the front row, in front of of the podium.

T and his co-emcee welcomed the guests.

“Our theme this year is friendship, because winter is the perfect time to celebrate kindness, teamwork and looking out for each other,” T said.

He spoke with clarity and confidence. We were so proud. 🥰

All the Grade 1 to 5 students opened the show with Bruno Mars’ “Count on Me” and I already felt tears in my eyes.

T did a great job introducing all the successive numbers, including the Grade 3 class’ performance of Dolly Parton’s “A Friend Like You.”

T sat on my lap, in between speaking, to watch the show and I felt gratitude during those moments.

Gratitude for teachers that build him up, for the joy in my heart and most importantly, for this moment for T to shine.

In his closing remarks, T noted that “our students had shown that friendship, kindness and community make the winter season truly bright.”

And boy, did our little guy shine brightly.

Here’s an edited clip of parts from the opening and closing remarks of the show. T is heard first in the clip.

Birds of a Feather

Humans, like other animals, naturally seek and thrive through social connection.

A flock of birds, a school of fish, a pack of wolves, and so on – we’re created to be social beings born into a family and socialized into communities.

I reflected on this during a brisk, late afternoon, bike ride with T to feed ducks in a pond.

Earlier in the day, we walked down to the pond next to the recreation centre, after his soccer practice. T enjoyed watching the ducks and they were not shy about approaching him.

I suggested to T that we could come back later on our bikes and feed them bread; I had saved up a stash of end pieces, because I’m the only one who eats them and I rarely eat bread! 😆

It was so nice to explore new trails in our neighbourhood. T was super engaged.

He couldn’t resist stopping by an off leash dog park and was not shy about approaching families to ask if he could pet their dog.

It made me happy to see the family enjoying their afternoon together and to welcome T into their circle for a few moments.

We biked past other families enjoying an afternoon walk and I smiled thinking that this is what spending our limited free time is all about.

The past few weeks have been a challenging one for our family, as we navigated the stress of the unexpected situation at school (I have a positive update on that soon).

Quality family time suffered, because of the stress and exhaustion. Thankfully, as I always believe, rushing river leads to calm water.

The golden hour sun cast a peaceful glow on our visit and I loved watching T break bread and throw the pieces with abandon at ducks and geese.

We then went to the other side of the pond to share the love with the other ducks and geese.

The spontaneous outing cleared my head and I know it calmed and regulated T too.

As I watched the ducks and geese, living their simple lives, with connection and contentment, I wondered how life got so hectic that these moments of connection with T were parked aside.

This was a needed reset.

Before we got back on our bikes to head home, I gave T a hug, who reciprocated with a tight squeeze, and I thanked him for a fun outing.

When we got home, he took a bath, while I made his favourite Hong Kong tomato beef stew for supper.

Update: A kind reader, Pete, shared in the comments that feeding birds bread is actually bad for them and can lead to a deformity called angel wing. I’m glad to have learned this and I’ve also shared this with T. We will look for alternatives next time T wants to visit and feed the ducks.

The Loving Hearts of Grandparents

T’s grandparents were in town to celebrate the hubby’s 45th birthday – and it was wonderful to spend family time together.

They arrived Wednesday night and T was so excited to see them.

Friday was a PA Day and the hubby and I took the day off work. We took Grammy and Grandad on their first visit to the charming and festive Christmas Market at the Distillery District.

T was overexcited and his hyperactivity was too much for everyone.

Despite that, Grandad got him cotton candy. The wonderful thing about grandparents is they love to their grandkids no matter what.

The hubby and I are fortunate to have great in-laws in our respective parents.

We get along and they love and accept T despite his challenging moments.

I’m so comfortable with them that when T has a meltdown or is disregulated, I don’t feel the same anxiety or stress as I would with my family.

The one exception is Ma, who loved T without judgment. I thought about her as I watched T spend time Grammy and Grandad.

I miss Ma a lot and the pain of her loss hits me at unexpected times. The world does feel lonelier without our moms.

I am thankful T gets to spend a substantial part of his childhood with grandparents on both sides; only Ma’s mother was alive when I was born and she passed away when I was 6.

I see through T’s eyes and experiences that a grandparent’s love is unique and the relationship between grandparent and grandchild is special.

This illustrated portrait of T and Ma sits in his room, something he specifically placed.

I wish the hubby’s family lived closer, as T responds well to them and their unconditional love is so good for his self esteem.

So I always welcome time spent with them and prioritize our annual two-week summer roadtrip to visit them in New Brunswick.

I often remind the hubby to enjoy his parents, as their time together is finite and fleeting.

The rest of the weekend was lowkey.

The hubby’s parents and I played many rounds of our favourite card game Five Crowns.

Grandad joined T and I for his Saturday morning swim lessons and Grammy joined us for T’s soccer practice on Sunday.

T had math tutoring with Ms Karen Sunday afternoon and she raved to Grammy and Grandad about how well T is doing. I could see the pride on T’s face felt.

On Saturday night, I took the family to Dragon Legend buffet for the hubby’s birthday dinner.

It felt like we just celebrated his 40th during the pandemic but alas, five years just flew by.

Then we enjoyed a white chocolate cake at home.

T came up with the cake topper message and his heartfelt words were on point: “We love you, Daddy!”

Thriller Night

T enjoyed trick or treating with friends this year.

Halloween fell on a Friday and we stayed up later without worry of school or work the next day.

T dressed up as a child being abducted by an alien and I chuckled at his grandparents asking who the alien was when we sent them a photo.

Halloween is one of T’s favourite times of the year and he helped pick out the pumpkins and emptied the guts before the hubby carved them.

Two younger friends invited T to go trick or treating at their neighbourhood.

For two hours, we enjoyed walking around and I loved watching T running around excitedly from door to door with his friends to collect candy.

Some houses went all out with decoration. I just love when parents get into the groove all for the enjoyment of other children.

It was a cool autumn evening and it was awesome seeing so many families out. This is what community is all about.

The hubby stayed home to give out candy and by 7:45, we ran out of candy and he had to post an apologetic sign on our door.

As I laid on my bed later that evening, about to pass out, T walked in and gave me a hug.

He said he had a lot of fun then burst into tears, saying this was the first Halloween without our cat Lanaya, who passed away in the Spring.

I could tell he was processing a lot of emotions and it just came pouring out for him.

It felt bittersweet knowing how much fun T had. It’s not often that kids like T get invited for fun outings and so I was so happy he had this night out to enjoy himself.

This in itself was the best treat I could’ve asked for.

A Strong Sense of Justice

At a parent-teacher interview a few years ago, T’s Grade 1 teacher said T has a strong sense of justice.

Despite the challenges we navigate with T, his general sense of right and wrong, and doing the right thing and speaking up when he feels he or others are wronged, gives us hope he will be ok.

Two Sundays ago, in the midst of feeling ongoing stress from still-unresolved challenges with his school principal, the hubby and I were startled by T who came home from the park crying.

“Someone stole my bike!” he said, in tears.

T had left the bike by the playground and went playing by the field and climbed trees – and when he came back, the bike was gone.

I was originally quite annoyed by T’s lack of awareness, but that quickly turned into anger that someone would steal a bike from a child.

T’s bike means a lot to him. He goes biking every day to regulate himself and it brings him a lot of enjoyment.

It made me sick and feel violated that this happened in our safe neighbourhood.

The following evening, after work and T’s tutoring session, we created a poster that had the message below and included the photo above:

  • BIKE THEFT ALERT
  • On (date), our son’s bike was stolen from (park name), while he momentarily stepped away to play in the field.
  • Please watch your belongings.
  • Shame on the thief for stealing from a child!

I let T know that the chances of someone returning the bike was very low, but it was important that we speak up about our injustice and try to hold people accountable for their actions.

T was just as fired up as I was.

We went for an evening walk and put up the poster near the park.

A week later, also on a Sunday afternoon, T ran inside the house excitedly, “Someone wrote a note on the sign! They have the bike!”

We walked outside with T and sure enough, there was a message.

The hubby wrote his number down on the sign and received a call in the early evening.

We met up by the sign – and I was ready to call the police if it was a scam. A man who lived across from the park said he took the bike because it had been unattended for a while.

I didn’t want to question the truthfulness of his story. Regardless of the real reason he took and returned the bike, it’s been returned.

So I asked T to thank the man.

I was thankful that T was reunited with something that brings him so much joy – and that our efforts to speak up were met with a sense of justice.

The following day, as I drove T home from school, he went on a rant about how Mondays are the worst day of the week.

“There are still 4 days of school left!” He said with conviction. “How come there are only 2 days to relax but there are 5 days of school and work?”

After pausing, he told to me to ask God about his complaint.

Something tells me that God has bigger injustices to deal with at this time!

Living in a Virtual World: An Escape Room with a Twist

T had his first virtual reality experience, which ended with a meteor destroying Earth.

On Saturday evening, we took T to check out VRCade and we tried their popular VR escape room: Space Station Tiberia.

For the unfamiliar, here’s a primer:

  • Virtual reality involves wearing a headset that fully immerses you in a 360 degree digital environment where you can explore and interact with the environment through the use of the headset and handheld controllers.
  • Escape rooms are immersive games, played in groups, that involve solving puzzles using clues embedded in the room – with the goal to exit the room within a time limit.

The hubby and I have previously tried VR and escape rooms separately but this was our first time trying a VR-based escape room.

This was T’s first time trying both – and he looked bad ass in the gear.

Space Station Tiberia was so fun.

Players are placed in a broken down space station and must work together to power it back up and destroy a meteor headed towards Earth – within 40 minutes.

Here’s the game’s trailer:

There are three separate rooms that have to be completed one after the another.

My favourite was the second room, which had an extraordinary view of Earth, and you have to power the ship’s main controls.

We made it to the final room: the outside of the space station. We had to figure out how to power the ship’s laser gun and use it to destroy a fast approaching meteor.

You can imagine trying to do an escape room with a child with ADHD and FASD who was trying VR for the first time. 🤣

He didn’t really work with us on the puzzles and instead busily explored the environment, picking up virtual objects and throwing them at us.

But he had a lot of fun, which is all that matters!

The hubby and I were both impressed with how life-like the experience was. We felt like we were up in space and I took the time to walk around and look all around us, including “down” at the gigantic view of Earth below.

The outing provided much-needed distraction from recent challenges at school. I’ll share an update later. T is innocent but is impacted by sickening BS caused by an incident that didn’t even involve him!

So while I believe real life is always more interesting than virtual life, I can see the appeal of virtual escapism from time to time!

So I know you’re wondering, did we survive?

Well…

… the puzzles were very tricky. 🤣

As the final 60 seconds counted down, the hubby frantically tried to solve the puzzle, still missing six battery cells to power up the laser gun; T probably hurled some batteries out towards space. 🤣

T and I knew we were dead and made peace with our fate.

We walked towards and stood at the edge of the space station. I wrapped my arms around him and he hugged my arms and we enjoyed the view of the meteor rapidly approaching us. 😂☄️

Creating Space for Something New

“The park is fading away,” T said with sadness during a recent bedtime, as I was tucking him in.

He said that several mulberry trees had been chopped off over the late summer.

Earlier in the summer, the trees provided great enjoyment, after the hubby and T noticed a group of seniors picking wild mulberries from the tree.

Over the following days, T and the hubby – and I joined in later – filled containers full of the fruit.

The hubby made a jammy syrup with them then I used the syrup to dress roasted porkchops.

I told T the trees were likely cut down to deter the two wild coyotes that have been living in the area and feeding on the mulberries.

Then T recalled the tree that had been cut down by his daycare and the tree in our neighbourhood that fell during a windstorm.

As we know with kids, sometimes there’s a deeper meaning behind their words.

I reminded T that change is a part of life and it means we lose people and things. It’s sad when it happens and change is a hard part of life.

I then said that change can also be good, because when something goes away, it creates space for something new.

One of the hardest parts of caregiving is helping your loved one – who is still developing their emotional and coping skills – to understand the harder abstract things in life.

It can especially feel hard when your own emotional capacity is maxed out.

As with anything in life with T, you do your best and take it a day at a time.

T started his Grade 5 year, his final year in this school before he moves to middle school.

We are very fortunate he’s had a very positive start to his school year, thanks to his CYW and structure his CYW and the school have put into place.

When I picked T up for daycare on Friday, the staff told me that T was briefly upset that afternoon.

He told her this was his last year in his school and a school he had spent more than half his life at.

Oh, that felt heavy for the end of a long week.

Change is hard and change is inevitable.

This is a big year for us as we try to advocate for the resources and look for the best options as T moves to middle school next year.

I have more questions and uncertainty than answers.

But I know one thing is for certain. Change is coming and it will create space for something new in our lives.

Regrouping: Finding Resilience in the Caregiving Journey

A subtraction worksheet drove me into a meltdown with our neurodiverse 10-year-old.

I had an early start to a typical Tuesday work day, followed by a two-hour evening meeting of a Family Advisory Council that I volunteer with. After the meeting, I was hungry, brain-dead and just wanted to crawl into bed.

But math homework with T awaited. It was past 8, nearing T’s bedtime and we were both done.

The work looked simple. Four 3 digit by 3 digit subtraction questions. T’s teacher wanted him to use base 10 blocks to explain how he used regrouping to complete the questions.

Base 10, what? Here they are, in case you were, like me, wondering what they are.

I didn’t have the mental reserves left to figure out whether these worked like Jenga or Tetris. This was not how I was taught subtraction and I figured that T had done 3 digit subtraction in Grade 3 and the work should be a cinch.

Nope.

It was like he was encountering this math for the first time.

My reaction could’ve been better. After 15 minutes of my boiling frustration and tears and blood-curling screams and swearing on T’s end, I put the work away and told him we were done.

I e-mailed his teacher to say that we did not finish the work and would have to try another day.

I did not sleep well – thinking about how frustrated I was that we were back at square one with concepts he had learned two grades ago. I also felt guilty that I reacted the way that I did.

Regrouping is a process in subtraction where you cannot subtract a smaller digit from a larger one and have to “borrow” from the column to the left.

Regrouping is also the action of reassembling, typically after being defeated.

With a few days of hindsight, I admit that I got defeated in the worst cringe-worthy, guilt-ridden, shame-inducing way.

Parenting a child with a disability, such as FASD, amplifies the difficulty, stress and exhaustion of caregiving.

There are many moments when I don’t have reserves to borrow from and so my responses are rarely my shining best.

Sometimes, the best response is to let things sit, set them aside and try again with a refueled tank.

The following evening, I reminded myself about how to regroup using base 10 blocks by watching a short YouTube video (see below).

It’s amazing how doable something looks when you’re rested and have a clear head. Oh yah, I’ve done this before, I realized.

I was able to explain the concept to T and worked through a question together with him.

I always tell teachers that T is a bright kid and picks up concepts quickly – if he’s able to focus.

T then worked through the other questions, no meltdowns nor tears, and got to enjoy tv time before bed as a reward.

His teacher sent home a worksheet for the weekend, which he worked through nicely this Sunday morning, after we slept in past 9 am.

I reminded myself that he had spent a whole summer not doing math, so this was also him regrouping on his past learnings.

He will pick it back up.

Part of regrouping means forgiving yourself.

If you’re a caregiver, special needs or otherwise, feeling like crap for how you handled a situation: let it go and start each day as a blank slate.

To clear my head after our Sunday homework, I exercised, ran errands, put away the laundry and dishes, and meal-prepped for the week.

Then I went biking with T. He left 10 minutes before me and when I arrived at the park, he was picking up garbage using a large plastic bag he found.

For the next hour, he walked around the park and filled up and emptied the bag into a large garbage bin three times.

“I want to protect the planet,” he said.

Watching him, with my hands in my device-free pockets, breathing in the fresh air and gazing at the trees start to change colours, was refueling.

This was a good day to regroup and to refuel for the inevitable moments in the week ahead when I will need to borrow from my reserves.

When we got home, T watched tv before dinner and I made a big batch of chicken soup.

From One Caregiver to Another on FASD Awareness Day

September 9 is recognized annually around the world as FASD Awareness Day and to raise awareness of fetal alcohol spectrum disorder.

This year, I was honored to be part of Surrey Place’s FASD Day event this recent Sunday.

The hubby and T also attended the event and T spent most of the event playing with another boy he has become familiar with through events hosted by Surrey Place.

During the panel, I was asked: “What advice would you give a caregiver new to the FASD journey?”

Here’s a video of my response (watch on Instagram):

We were also asked to each prepare short remarks before the panel. Due to time, the moderator did not prompt us to share them.

So I’m sharing them here instead. 😊

“Hi, my name is Ab., my pronouns are he/him and I’m the proud father of an amazing, bright, funny, kind 10-year-old boy with FASD.

I’m also a member of Surrey Place’s Family Advisory Council and thank you to today’s organizers for inviting me to be a part of this event.

It was nearly 10 years ago that we adopted our son after a 7-year journey through the CAS system. We didn’t know too much about FASD at the time.

I’m very thankful to our family doctor for referring us to Surrey Place after learning of our son’s medical history. We received a prognosis of at-risk FASD at 18 months and a formal diagnosis at age 7.

There were many tears and fears along the way, because of all the things my husband and I quickly learned and experienced about FASD.

But there were even more fun and happy memories. We are very thankful for our son in our life and do our best to live life with hope, humour, heart and adventure.

FASD Day, to me, is about raising awareness of a little known disability that impacts more Canadians than those with Autism Spectrum Disorder, Cerebral Palsy and Down Syndrome combined.

And yet, is often a source of misunderstanding, negative stereotypes, stigma and shame. As a caregiver, that is unacceptable to me.

And that is why we’re here today as a community – to raise awareness and to reframe the conversation about FASD.

I work in public libraries – and as my colleagues and I know and understand, especially during these uncertain times, knowledge is power.

In one way, knowing about our son’s prognosis and later diagnosis was hard in the beginning. Today, it provides us with a powerful tool to engage the world.

We just finished the first of week of Grade 5 and I can’t help but feel extra nostalgic, because this will be our son’s final year in his school after 7 years. The school feels like a community.

The schooling journey has not been without its challenges or meeting people who just did not get FASD.

But our son is able to experience successes and positive outcomes, because of an FASD aware and supportive environment thanks to his diagnosis and the supports the school has provided, including our son’s amazing Child Youth Worker.

I will never forget how, in his Grade 3 year, his teacher invited one of Surrey Place’s FASD Coordinator to speak to his class about children of all abilities.

We all know that FASD is a lifelong condition. But we can make life better by changing the environment around our children and individuals with FASD.

One step, one person, one community, one story at a time.

I want to end with a story. In April, we introduced our son to a tutor.

Her name is Ms Karen and our son’s first reaction was “Aren’t Karens mean?”

But she’s lovely. A retired teacher who has two adult autistic sons. She just gets it. She works with our son once a week to build his reading interest, stamina and confidence – an area of growth identified by his teacher.

Over the summer, she introduced him to The Bad Guys chapter book series. Our son loves them – I mean, who doesn’t love a main character who’s a gassy farting piranha.

Earlier this week, he crushed his summer reading challenge goal to finish not 1 but 5 chapters books. We could not be prouder.

I share this small win with you, because as this community that’s here today knows all too well, our small wins really are big wins.

That these wins are made possible when our children are surrounded by people who are aware, support them and who believe in them.

These are moments that feel rewarding, meaningful and that fill our hearts and give us the motivation to keep going during the harder times.

And that’s the message I want to share on this FASD Awareness Day. Thank you.”

As I shared with my fellow panelists after, the FASD caregiving journey can feel isolating. So I am thankful for community and to people who get it.

What a great day and event.

Good Things Are Worth the Wait

2 siblings, 2 generations of cousins, and T’s 1st summer tall enough to go on the biggest of the big roller coasters at Canada’s Wonderland.

The hubby’s sister and her daughter, T’s beloved cousin, A, visited us over Labour Day weekend.

They were in town from New Brunswick to watch the Dua Lipa concert on Labour Day and spent the preceding three days with us.

On Saturday, we headed to Canada’s Wonderland, the first time the cousins went together since 2022.

T was now finally one inch past the minimum requirement – 4 feet and 6 inches – to go on the two biggest rides: Behemoth and Leviathan.

The latter ride opened in 2012 and the hubby and I never got to go on it because of T.

The 10+ year wait was worth it. The ride was amazing!

Named after a mythical sea creature, the 1.7km long coaster reached a top speed of 148 km/h after a whopping first 80 degree drop from 93m high.

My cousin and T’s uncle J also came with us.

As our coaster made the steep ascent up the first hill and the only thing keeping us safe was a seatbelt and lap restraint, I started to question my life choices.

As our train made the skin-crawling turn downwards, I felt the scream rise to my throat.

It was then two minutes of uncontrollable screaming and laughing. Then it was done.

T was stunned speechless for a short moment. Then said he loved it!

Good things in life are worth the wait.

A 7-year adoption journey to be matched with T.

T saying his first words, finishing his first chapter book, learning to ride his bike and to swim.

There is no set time for when the good things can happen or be experienced.

This is certainly true on the FASD caregiving journey.

I remind myself – especially during the hardest moments – we’re moving at our own pace.

When the thrills come, take the moment to enjoy them – because it ends in a flash.

We arrived at 9:45 am and left at 9:00 pm.

The last ride we went on was Alpen Fury, which newly opened in July.

Billed as the fastest, tallest and longest launch coaster in Canada – and holding the current world record of 9 inversions in a single ride – the hype was real.

We waited in line for 2.5 hours. T was very restless and fidgety – and we unfortunately did not give him his evening medication – and his disregulated state tested all of our patience.

But we got to the end of the line – after the sun had set – and oh my goodness, believe the hype. The ride was absolutely incredible!

It was like riding a rocket and there were even moments our bodies lifted off the seat as we twisted and turned at a speed of 115 km/h.

By the end of the ride, our group of 18 riders clapped and cheered. T said it was the best ride he’d ever been on.

And just like that, summer break has also come to an end.

I wish all kids, caregivers and educators a great back to school – God help us all – and happiness, growth, fun and success in the year ahead.

Despite what my face says, I loved Alpen Fury! 😂

Digital Detox: Letting Our Neurodiverse Son Enjoy a Screen-Free Vacation

As I showered before departing on our roadtrip, the hubby asked if we should reconsider not bringing T’s tablet with us.

“Don’t you dare,” I said. “You create your own misery.”

Like the time at the airport earlier this year when the hubby gave T his tablet to pass the time after I told him not to and it led to a traumatizing meltdown before we boarded the plane when the hubby tried to take it away.

Experts recommend limiting screen time for children, no screen time before 2 and two hours a day for 10 year olds like T.

Excessive screen time is linked to problems including aggression and addiction.

Layering on FASD and challenges with regulation and impulsivity, the tablet brings out the worst in T.

We’ve struggled the past year with moments when he swears excessively or rages when he loses an online game – and aggression when we tell him it’s time to put it away.

A few months ago, the hubby and I decided to take the tablet away completely. It was a hard decision, because it’s something that keeps T entertained – and let’s be real, it gives us needed breaks.

But it’s been a great decision.

T fills his time playing with his toys. He goes outside more and spends time with us. He can still watch tv, which for some reason does not disregulate him.

The aggression and challenging behaviours that stemmed from the tablet have greatly reduced – although they persist in other ways.

When we went on our Lake Superior roadtrip in July, we decided to leave T’s tablet at home.

We were worried about what our downtime would look like – because T’s restless energy is endless – but it worked out beautifully.

For our recent two-week visit to New Brunswick, it was a great decision to leave his tablet at home.

T participated in meal time conversations instead of demanding to have the tablet at the table. No power struggles or meltdowns.

He played with his cousin during the first week she was there.

Picking wild blueberries in the woods, which their Grammy made into a delicious cream cheese pie.

Spending hours playing on the beach…

… picking seaglass…

… digging up buckets full of live crabs and quahogs during low tide.

T also went for long bike rides with the hubby and I, with ice cream rewards at the end.

T didn’t ask for his tablet once and the hubby and I didn’t miss the challenges it creates.

T still got to watch tv on his own and enjoyed movie nights with his cousin and grandparents. But it was kept to a minimum. He was having fun doing other stuff.

Yes, there were other challenging moments – but in the grand scheme, it was a wonderful getaway full of warm memories.

On this recent Wednesday, we got up at 3:30 a.m.to watch the Perseid meteor shower.

T saw 1, I saw 2 and the hubby saw the most with 3.

We also saw two planets – the two dots to the right of T’s head – which we confirmed were Venus and Jupiter.

I admittedly also need to reduce my own screen time use. Digital detoxing is one of my active goals and the small steps I’ve taken, which I’ll write about in a later post, have made a difference to my wellbeing.

Looking at the stars and distant planets – with the soothing sound of waves in the water in the silence of night – reminded me of the wonder we can experience when we take the time to look up.

Full Moon at the Bay

We celebrated our 16th wedding anniversary this weekend, halfway through our two-week visit to T’s grandparents in New Brunswick.

It was peak full moon – sounds about right 🤣 – and we enjoyed a morning barefoot walk on sandbars during low tide.

The breeze, cold salt water, soft sand and gentle waves were soothing.

We are very fortunate that T’s Grammy and Grandad live by the water and that our two-week visits in August are a summer tradition.

Low tide at the bay is mesmerizing during a full moon, with the receding water revealing more of the shoreline and you can walk on the shallow waterbed and look for treasures of the sea.

We dug up a bucket full of large quahogs and T has become quite good at finding them.

The hubby, with his parents’ help, made a delicious seafood chowder for dinner.

The hubby figured out a trick to find large quahogs – and once he taught us the trick, we dug up quite a haul!

T excitedly ran up and down the damp sand of the receded beach, searching for small crabs.

He found over 30 crabs hiding in the sand, only getting pinched once by a rightfully unamused crab.

T started lecturing the crab for not listening to him.

Someone not listening to instructions? I can’t imagine what that’s like.

The crabs were too small to eat, so we released them back in the water.

A full moon reminds us that most things in life, like the tides, are larger than us.

What’s within our control is to take things a day at a time, to focus on the big picture, to count our blessings, and to live with hope, humour, heart and adventure.

I’m reminded of these lessons every day as a parent; to see a complete child rather than get stuck on the complex symptoms of FASD.

For the joys, adventures, lessons and challenges we experience together with T, I am grateful.

Sarang Kitchen: A Restaurant For Minds of All Kinds

Delicious Korean fried chicken with a side of inclusiveness for neurodiverse people and dogs.

That was the impressive, yummy and heartwarming experience we enjoyed at Sarang Kitchen, the first social enterprise and restaurant in Toronto that welcomes and employs neurodiverse people, including autistic individuals.

I’ve been wanting to visit this place since it opened in 2023 and now has two downtown locations. The hubby, T, a good friend and I recently visited for dinner after a Saturday outing at the city’s newly-opened Biidaasige Park in the waterfront.

As we approached the entrance, I knew right away this was going to be a special experience.

A patio sign advertised sensory-friendly hours daily before 9 pm – with calming music, reduced lighting, a sensory room and sensory boxes, including fidgets and noise-cancelling headphones.

The restaurant had bean bag seating in addition to regular tables and chairs.

Our selective eater T had a McDonalds Happy Meal beforehand and spent most of our visit playing with the sensory boxes.

This allowed us to enjoy the delicious Korean fare, including our starter dish: beef bulgogi fries.

The three of us split a platter of fried chicken and squid, with three chicken flavours: salted egg, black truffle oil and spicy garlic. Yum, yum! 😋

Dogs are welcomed inside and the restaurant has specific menu items for dogs!

Sarang is a Korean name for girls that means “love” and “affection.” It shows in the thoughtful customer experience.

T can get quite fidgety in public places and he was calm and regulated during our entire visit.

This is a model that other restaurants should follow. We’ll definitely be back! 💕

“Every Day is a Blessing”

T snuck up on me while I was reading on the couch and with a mischievous grin, he said earnestly, “Every day is a miracle.”

I still chuckle at this exchange and I also see the wisdom, intended or not, in his innocent words.

Yesterday morning, I attended the funeral of a family friend and watched with sadness as his wife and adult children mourned his unexpected loss.

Yesterday evening, as I was heading out to the park with T, our neighbour approached the hubby and I and tearfully let us know her partner, who had been sick for the past while, was diagnosed with terminal liver cancer.

Every day is indeed a blessing.

I try my best to be mindful of this when I have a hard time with T in our life with FASD.

Moments of disregulation and defiant behaviour.

Off-the-cuff comments from judgmental people who don’t understand this invisible disability and biting my tongue to not rip their heads off.

Shortlived moments of doubt, guilt and exhaustion – and wondering whether I’m doing enough.

When things feel overwhelming, it is grounding to think of the here and now.

Today.

Every day is a blessing.

That is what’s so wonderful about children like T. Maybe it’s the FASD and the blank slate of a new day. Maybe it’s just his personality.

He lives in the here and now.

Every day is a blessing.

I was recently looking at photos from our Northern Ontario roadtrip. It feels like a lifetime ago.

I found a series of photos from Old Woman Bay where I was playing with the reflection of the water.

“Hey T, look at this, there’s two of you,” I said showing the photo of him on a sandbar.

“Can you imagine if there’s two of you?” I said. “I think I’d kill myself.”

I looked at him with a serious deadpan look. Then we both smiled and laughed knowingly.

Every day is a blessing.

Exploring the Beauty of Lake Superior Provincial Park

For five years, I’ve thought about this beautiful drive through Lake Superior Provincial Park. This summer, we went back and explored.

In 2020, we did an amazing roadtrip to Thunder Bay and I regretted that we only drove through Lake Superior; it was the middle stretch of a 14-hour return drive to Sudbury. 😝

This breathtaking view below as we passed by Old Woman Bay has stayed on my mind.

Earlier this July, on Days 4 and 5 of our roadtrip after departing Timmins, we explored Old Woman Bay, Sand River Falls, Agawa Bay Pictographs and Nokomis Trail on one long stretch of hikes.

T loved the adventure and I will treasure these memories with my family forever.

Old Woman Bay

Old Woman Bay is scenic sandy beach populated with driftwood.

Looking towards the horizon, the face of the Old Woman named Nokomis (Ojibway for Grandma) can be seen within the 200-metre standing cliffs.

We spent an hour quietly exploring the sparsely visited bay, absorbing the beauty around us.

T bravely went for a dip in the cold water. It was refreshing to say the least!

Overnight at Wawa

Wawa is a town in Algoma County, with a population of 2,700 and is located 3.5 hours from Timmins.

Wawa is Ojibway for wild goose and there are several large goose statues throughout town.

We stayed overnight at High Falls Motel and Cabins. I wish we had more time to enjoy our quaint cabin but it was a place to sleep and recharge.

Hiking the 5k Nokomis Trail

On Day 5, we stretched the 3.5 drive to Sault Ste Marie into a long adventure with a series of hikes.

First up was Nokomis Trail, its entrance located on the other side of the highway from Old Woman Bay.

As wonderfully detailed on this post by fellow blogger Wandering Canadians, it is a moderately difficult 5 km hike.

It took us 2 hours to complete and it was worth it. Nature is so healing for T. He is in his element and has so much fun on hikes.

Now here’s a funny story I’ll never forget.

T had been constipated since we started our trip and hadn’t 💩 in five days.

Of course, he needed to 💩 at the peak. Must be the uphill hike that moved his bowels.

As the hubby took the photo of me below, T screamed from the bushes, “Are mosquitoes going to bite my ass?” 😂

Thankfully, the hubby had the foresight to pack wipes!

I told T there will be a wild blueberry bush growing where he generously fertilized the Earth.

And here’s the hubby and a post 💩 T taking in the beautiful view of Old Woman Bay below.

The walk back down was filled with just as much fun adventure; the rocks a parkour course for T.

Chasing Sand River Falls

After our hike, we drove 30 minutes to Sand River Falls and was it worth the detour.

A young couple from Michigan snapped this photo. I thanked and wished them a Happy 4th of July.

We enjoyed a nice rocky hike that took us deeper into the woods and river from what could be seen – and what a site – from the road.

T loved the rocky hike.

And so did the hubby!

And yes, we’re a family that hikes in crocs!

Finding History at Agawa Bay Pictographs

Our third and final stop was 10 minutes away.

The Agawa Bay Pitcographs is one of the largest collection of Aboriginal pictographs in Ontario.

There is an 800m loop trail, with a steep staircase, that leads to the pictographs and features unique geological features.

There is a steep staircase carved from rock and steep cliff faces that are part of the pictographs – and make the hike a sweaty but worthwhile experience.

Once we arrived at the pictograph, it can be viewed from a rock ledge below the cliff.

A metal chain was supposed to be bolted all along the ledge but it had mostly been missing during our visit.

So we let T go as far as the chain went, pictured below, despite his temperamental insistence. We warned him that if he slipped into the lake, he was on his own!

There are 35 pictographs along this cliff that represent real and mythical animals – and here was one of the ones we saw.

A Satisfying Adventure!

We ended our long day of adventure with the remaining 1.5 hour drive to Sault Ste Marie – and T contently slept through most of the way.

There were a few spots we had planned to visit that we skipped, including Katherine Cove and Pancake Bay, as we were tired and wanted to relax in an air conditioned room.

This means we’ll have to come back one day!

I’m already daydreaming of a fall colours weekend trip, including the Agawa Bay Tour Train and chasing the Northern Lights in Algoma. 🥰

For now, we have our lasting memories. 🥰 Please enjoy this short video I compiled of our Lake Superior highlights:

The Hours: Lessons from a Windswept Pine at Killbear

The windswept pine tree on sunset rocks at Killbear Provincial Park is beloved by visitors.

Over 100 years old, standing on rocks over 2 billion years old, it has witnessed many untold moments.

I’m thankful that we are a part of each others’ passage in time, from the hubby and my first visit before T was born to T’s first visit at age 1 to our recent visit at age 10.

During one of the long meandering drives in our recent roadtrip, T asked what 10 years are called. I said, “A decade.”

10 decades? “A century.”

10 centuries? “A millennium.”

10 millennia? “Ask Google.”

Life unfolds like that, doesn’t it? Slow at first, like a single snowflake. Then it amasses into a snowball. Then the snowball is barrelling down a hill, accumulating size and speed.

Hours become days, days become weeks, months and years. Years and decades blend into each other.

During one of our of recent hikes in beautiful Lake Superior – photos soon – I thought with sober clarity that, at 44, I have statistically experienced more than half the summers that I will in my life.

As a child, summers felt like forever – I hope this is how it feels for T – but this summer is flying by.

At some point, hopefully not too soon, I won’t be able to enjoy rigorous hikes.

I’m not being morbid. I am simply being present to what I want to prioritize in life and the things I don’t want to waste valuable time on.

This shifting mindset is one of the gifts that this decade in my life continues to bring me.

Killbear holds a special place in my heart and for my family.

That was why we ended our week-long Northern Ontario roadtrip with a stop at Killbear, en route from Sault Ste Marie back home.

Killbear’s beloved windswept pine is now sadly in decline; even T is sad when he speaks about it.

But aren’t we all in eventual decline?

The trick is to fill our hours with joy, connection and adventure.

That’s what brings meaning to life – and why a single tree from among hundreds has captured the imagination of generations.

It’s tradition for us to take a photo of T with the tree during each visit. I hope to print, frame and put these up in our home when I have time (ha!).

This was our first visit and first camping trip with T, in 2016 at age 1, a few weeks after we adopted him. He was still getting used to walking.

This was a year later, in 2017 at age 2. How I miss the short pudgy toddler years.

Returning to Killbear during the 2020 pandemic summer at age 5.

At age 8, this was the first time we saw and learned about the tree’s declining health. It was sunset and the rocks had a magical reddish glow.

Lastly, for now, our recent visit two weeks ago, at age 10, we were heartened to see the tree still there.

The title of this post was inspired by Philip Glass’ haunting score for one of my favourite movies, “The Hours,” adapted from Michael Cunningham’s Pulitzer Prize-winning novel.

I thought about this score and the novel’s message when I was looking for music to accompany my related Instagram post. It was a very fitting score!

Canada Day Fireworks in Timmins

We kicked off T’s summer with our annual family roadtrip and headed back to Northern Ontario.

I planned this 7-day trip in April. As the days grew closer, the excitement was palatable in our home.

On our first day, on Monday, we drove 4 hours from Toronto to Sudbury, making a pitstop at Killarney.

We arrived during a thunderstorm, so our plans for a hike were kiboshed and we headed to Sudbury.

The weather cleared, so we visited the Big Nickel. The only other time we were here was in 2020. What a difference 5 years makes in T’s height!

We then enjoyed a hike at Kivi Park, where we saw a wishing tree. I made a wish related to family.

On Day 2, we drove 4 hours from Sudbury to Shania Twain’s hometown in Timmins.

We made stops along the way, including a hike along scenic Onaping Falls and AY Jackson Lookout.

T is in his element in the outdoors. The rockier the hike, the better for our aspiring parkour artist.

Nature is so healing for all of us.

We hiked past a shatter cone, “a rare geological feature only known to form in the bedrock beneath meteorite impact craters or underground nuclear explosions.”

T thought it was very cool!

We arrived at Timmins in the mid afternoon and relaxed at our hotel. The hubby took T swimming at the pool while I napped.

In the evening, we joined hundred of locals and visitors at Gillies Lake for Canada Day fireworks.

It felt special enjoying this holiday away from home but also within our province.

We explored the Timmins area on Day 3, including a hike along Grassy River to High Falls.

The sound of waterfalls cleanses my mind…

… and so does an unexpected peck on the cheek from an overstimulated child who knows he’s getting on his Papa’s last nerve.

I am so grateful we have these roadtrip traditions to look forward to as a family.

Summers are short, so we pack them in with memories.

On Day 4, on Thursday, we headed off from Timmins to Wawa, to explore beautiful Lake Superior Provincial Park.