My Life With T

The Exceptional Caregivers Life

I’m excited to share that a podcast I worked on has launched!

The Exceptional Caregivers Life features real and compassionate conversations about the highs and lows of caring for individuals with disabilities and complex needs.

Created by Surrey Place’s Family Advisory Council and hosted by members Liz Phipps and Wendy Robertson, our podcast features stories of successes and challenges – of finding joy, hope, humour, respite and community to keep going on a journey that is often hard, exhausting and isolating.

Our pilot season features lived experiences with caring for individuals of all ages with autism, down syndrome, fetal alcohol spectrum disorder, Emanuel Syndrome, medical fragility and other complex needs.

Listen to our trailer:

Listen to Episode 1: Finding Your Community

Free time is almost non existent in my life, but volunteering for the Family Advisory Council the last two years has been rewarding.

It’s a way to give back to Surrey Place, an amazing organization that has helped our family and T with incredible services since he was 18 months old.

And it’s a way to do my part to advocate.

I took a behind-the-scenes project lead role for the podcast because I saw it as a creative challenge and a great way to help advocate for T, FASD and the disabilities community.

Stories create awareness, empathy and inspire action. I am hopeful our podcast will do our part to contribute to the larger whole.

It was a joy working with fellow council members to brainstorm ideas and outline episodes, with production company Lead Podcasting on recording and post production, and with Surrey Place’s marketing team on the communications plan.

I also appear on a later episode this season, “Feeling Gratitude in Your Hardship.”

I learned a lot through this project – and got to exercise my journalism and communications muscles.

But the core reason I took this challenge on was T.

Every bit of awareness and advocacy for FASD goes a long way. I’m just one person but I know every contribution makes a difference.

I hope you tune into our podcast and if you do, let us know what you think! 😊🙏

Awards Season

We all need recognition sometimes, as it boosts confidence, motivation and self esteem.

It’s Sunday night and T is taking a bath while I’m relaxing with the Oscars.

They just handed the first award to Kieran Culkin for Supporting Actor and he gave a joyful speech.

Oscars night has changed since my 20s when friends would come over to watch it together.

I thought about my dear late friend Jenny, who was one of those who came every year.

In my 40s, it’s a solitary experience, because I’m passed out by 9 pm. Good thing for PVRs!

There’s something fun about watching the Oscars and seeing people win and be lauded.

When I was in my teens, I’d daydream about winning for Best Screenplay and would practice my speech in the shower.

There is something affirming about being recognized for a job well done, especially if that recognition is from your peers.

The hubby proudly displays my Grade 9 Math Trophy at home and points to it when he wants to get out of doing math homework with T. 😂

When I think of T, a bright, kind, funny child with learning difficulties because of ADHD and FASD, I wonder what the academic journey holds for him.

I worry about how challenges and frustrations may erode his confidence and self esteem.

Thankfully, with the right supports in place, T has experienced successes despite ongoing challenges.

We celebrate his wins – like his first A on his report card – because all of us, especially children, need to hear ongoing positive feedback.

On Friday, amidst a busy day at work and the shitshow at the Oval Office, the hubby and I received lovely photos from T’s child youth worker.

T received a recognition award for demonstrating the character trait of Fairness.

The photo showed him holding his certificate, standing in front of a large TV with a description of the award up on the screen:

“Fairness begins with a genuine sense of equality – treating everyone with respect, playing by the rules, and keeping an open mind whether we’re working or playing together. When we nurture this sense of fairness, we help create a classroom community where each person feels valued and balanced opportunities are shared.

Throughout this month, certain students have stood out for their strong sense of fairness. Their honesty, empathy, and considerate actions have ensured that all classmates feel respected and have equal chances to succeed.”

Oh, what a proud moment for us. We asked his CYW to tell him how proud we are and we made a big deal when he got home that night.

His certificate is now up on our fridge.

The truth is that us caregivers also need these wins, because it can be an exhausting journey.

But most of all, it’s about wanting to see our kids shine and feel good about themselves.

Judging by the big handsome smile on T’s face, as he holds his certificate of recognition, he is feeling pretty good about himself! 💕🙏

Pictured at Top: Climbing a tall structure at an indoor adventure park at his classmate’s recent birthday party.

Full STEAM Ahead: Nurturing Creativity and Curiosity in Neurodiverse Kids

It turns out our sweet T has burgeoning skills other than driving me batshit crazy.

I say this with love and fondness. 😇

I recently watched the documentary “I’m Tim,” about the rise and tragic loss of EDM artist Avicii, whose upbeat music T and I enjoy.

It struck me how supportive his parents were of his creative pursuits from an early age.

STEAM (science, technology, engineering, arts and music) has gained significant traction in education in recent years.

It resonates with me, because of its pragmatic nature and focus on hands-on learning and creativity – which align with T’s style of learning.

Repetitive worksheets? A struggle for T to complete.

Hands-on learning through building, experimenting, creating and play? He gets fully engaged for lengths of time, impressive when you consider his ADHD and FASD diagnosis.

It’s also nice when T finds productive ways to get off screentime, which brings out the disregulated worst in him.

T’s very supportive Child Youth Worker at school, who’s been with him since Grade 2 – he’s now in Grade 4 – has gifted him sketchpads and T often gets in a drawing mood for hours.

Get your mind out of the gutter and keep scrolling.

The hubby and T recently both got into Legos.

My cousin, T’s Uncle J, gifted him a Super Mario Bros piranha plant Lego set for Christmas.

It’s a 540-piece set recommended for 18+ builders and my first reaction when T opened the gift was, “Are you trying to kill us?”

I imagined hundreds of Lego pieces thrown all over our home and T having meltdowns out of sheer frustration.

But it ended up being a wonderful perfect gift. T surprised us with his focus, working on it over a few days over the Christmas break.

The kid was so excited to show us the finished product and all the hubby and I heard, as he was walking up the stairs, was a loud crash.

Yup, the poor guy dropped the plant and the petal top shattered into pieces.

Oh the meltdown! 😂 Oh the “I fucking hate Lego” screams through the tears. 😂

But thankfully, the nice thing about Lego is that they can be rebuilt.

We thanked T’s Uncle J for this thoughtful gift by sharing a pic of the rebuilt finished product.

This melted bead art set was a gift from the hubby and I, as I learned on Christmas morning when T opened it. 😂

Similarly, I had visions of beads strewn all over our home. But it’s something T enjoys working on in daycare and he enjoyed working on it at home.

His designs are quite creative!

Screaming at me for snapping this photo of his unfinished art. 🤭

This Marble Run build set was a gift from T’s Grandad and Grammy – and it’s very cool.

T wanted to open it on Christmas Day, so I opened the box and sorted all the different parts.

Then quickly lost motivation to figure it out and wanted to take a nap instead. 😆

But this kid figured it out all on his own and regularly spends time constructing his own marble run courses, without help from the manual.

I love seeing the creative courses he comes up with.

I love seeing him fix his course, through trial and error, when something doesn’t work as planned.

It really is the best kind of learning and he is so engaged.

This was a recent course he built that the hubby and I thought was really cool.

The FASD caregiving journey teaches and reminds me everyday to take a strengths and interest based approach to learning with T.

He is bright and capable. Yes, he has and will always have challenges with learning.

But learning happens in all forms and magic happens when we find the things that truly pique our children’s interests and build on their strengths.

Lean on Me

Who we lean on during the hard times. That is the definition of family.

A few days after T’s birthday party, I got quite sick. Fever over 40 and after a day sitting in Emergency, I was prescribed antibiotics for pneumonia. Yes, twice in less than two years. Fun!

During the four days I was bed-ridden, the hubby took good care of T and I.

Even T laid off the profane language and sarcastic name calling. He was a sweet pea.

As I started to get better, I joked with T, “Are you still going to be nice to me when I get better?”

I could see he was having a crisis of faith. He said quite earnestly, “I don’t know!” 😆

We had a snow day on Thursday, absolutely walloped by snow, and schools were closed.

The hubby and I worked from home and at the end of the long work day, T gave me this lovely art he had created while I was working.

It cheered me up and I gave him a hug.

I often think about how much the three of us lean on each other.

True, the hubby and I do a lot of work to support T. But T also plays an important role in being our support system too.

T has been talking about his mom the past few weeks.

He is aware that she is unhoused and that she’s battled – and may still be battling – addiction.

He told us he wants to take care of her and that if he were to meet her, he would throw away all her alcohol and drugs.

“I will give her nutritious food, like milk, yogurt, carrots.” He said it with such conviction I couldn’t help but smile.

Children have such an innocent view of the world and I want to treasure these moments before T becomes an adult in the blink of an eye.

This past weekend, in addition to a second snowstorm, we celebrated Valentine’s Day on Friday and Family Day today and sandwiched in the middle is the anniversary of when our adoption was finalized in court.

I love that this annual tradition will always unfold in this symbolic sequence for our family.

At Age 10, We Threw Our Son his First Birthday Party

Our little guy is 10!

10, double digits, how is this possible?! It was just yesterday that he was learning to walk, we had just started potty training and I was counting with one hand the number of words he could say.

T had his first-ever birthday party on Saturday at Skyzone Trampoline Park.

I’ve often felt guilty that we never got to do a proper party for T. The pandemic then my sister and mom’s deaths at the start of the last two years made it hard to plan one.

This year, the hubby and I were determined to make it happen.

We were nervous no one was going to come, as we’ve read heartbreaking stories of neurodiverse kids being devastated during birthdays.

So we let T know to hope for the best and to be ok if it was just the three of us celebrating.

Things worked out amazingly!

T celebrated with 18 kids from school, daycare and his foster brother. With parents, his foster parents, grandparents and us, there were nearly 40 people celebrating T’s big day. 💕

Saturday started off with swim lessons.

His grandad joined us and it was nice for him to see, for the first time, T in action. We learned that T was moving up to Level 7 in the Spring. 💕

SkyZone ended up as the perfect venue. 1 hour of play at Noon then pizza, nuggets and cake at 1. Then everyone had to GTFO.

I loved seeing the kids sitting, eating and chattering amongst each other. It was nice to meet them and their parents.

Prior to the party, we spoke with T about being a good host and to spend time with each guest.

My heart filled with gratitude as I watched T smile bashfully and with appreciation, as the room sang Happy Birthday.

He stood between the hubby and I and held our hands as I said a few words of thanks. Then I asked T if he wanted to say anything.

“Thanks for coming to my party and celebrating with me,” he said.

T wanted a Sprunki themed cake; it’s what’s in with the kids these days.

After everyone left, one of his friends and his dad stayed behind for another hour and a half.

This Grade 4 student was new to the school and a kid that gets along very well with T.

Speaking with his dad, I learned the kid has ADHD and dyslexia and his older brother is autistic. The classmate is on an IEP and medication.

I openly shared T’s diagnosis and our journey and as I watched our kids play together, I felt that they were brought together for a reason.

T received a lot of presents, even though we asked parents not to bring presents.

As I watched T open them at home, I thought to myself that every child deserves at least one amazing party in their childhood.

So we soaked up the moment and the excess and smiled with gratitude.

I spent last week looking at old photos and so many fun memories and adventures from the last nine years. Each stage had moments I wish I could bottle up forever and tough lessons that made me a better person.

Parenting is not easy. Layer a complex diagnosis such as FASD on top and some days can be very challenging.

I am thankful for our son and every moment spent with him. He’s made our lives richer and meaningful. I look forward to the memories and milestones in the decade ahead! Puberty, stinky armpits and feet, birds and the bees, adulthood. 🫣

Happy 10th birthday, T! We love you so so much. 💕

Cooking for the Soul: Thirds

2025 is the year of lean. This includes leaning into activities that bring me joy and comfort, like cooking.

The hubby and I also want to be leaner with our food expenses.

While we are budget conscious, we can do better at eating out less and getting Uber Eats takeout, which we do out of convenience in our busy lives working and as special needs caregivers.

Cooking is a hobby I picked up during the pandemic and it’s one I still enjoy when I have time.

I get inspired by bloggers and influencers – and have a long list of recipes I will never get through.

One of T’s New Years goals, as he told his teacher before the break, is to learn how to cook.

I had suggested to T that we’d start a weekend cooking club so he can start working on his goal.

He’s helped out numerous times in the past, but he has yet to take me up on the cooking this year.

I’ll keep trying!

Helping brush egg yolk on a strawberry rhubarb pie at age 5, in the early days of pandemic lockdown.

In the meantime, here a few of my recent cooking therapy adventures, which have brought me enjoyment, comfort and momentary respite from the daily grind. 😊

I like to cook with ingredients I’ve never used and fennel was an item I always walked by the supermarket and didn’t know what it was.

This chicken fennel barley soup was comforting to make! I cooked it soon after The Heart of the Matter ladies’ engaging podcast chat about soup. I encourage you to listen!

I saw this Persian cucumber salad on an Instagram influencer’s feed and had to make it.

The flavour combination of cucumber, avocado, dill, lemon juice, fresh feta and toasted walnuts was refreshing.

Served with roasted chicken thighs.

We eat salmon once a week, as fish is lean and healthy. I usually air fry it as it’s time efficient on busy work and school nights.

I made this simple salmon fried rice as I wanted a change! 😅

This crispy pork carnitas was so simple to make!

I’ve just started to explore Mexican cuisine and look forward to trying beef barria ramen soon.

I couldn’t find pickled red onions in the store so I topped our tacos with leftover feta in our fridge.

I haven’t made gochujang chicken in a while and the hubby was craving it and I had leftover gochujang in the fridge.

It was a simple and nice pantry dinner!

Sichuan boiled fish is a dish I’ve wanted to make for a while. It looks fancy and I love spicy food. It was fun to demystify this dish by making it.

I used tilapia but you can also use haddock, cod or catfish.

I love sundried tomatoes and made baked sundried tomato chicken for dinner tonight.

If you have a favourite recipe or enjoyed making a recent recipe, please share it in the comments! I’m already hungry and dreaming up my next cooking adventures! 🤗

His First Real Sleepover

A weekend in December gave T his first taste of a beloved childhood tradition.

As a parent, I wish for T to enjoy all the common childhood experiences, such as camping, birthdays and sleepovers.

He had his first “sleepover” two summers ago at his grandparents’ cottage. He slept in a tent outside with his Aunt and cousin, while we slept inside.

We recently reconnected with his foster family, after a four year break during the pandemic.

His foster parents kindly offered to take him for the weekend, when T’s extra curricular activities winded down.

They took such great care of T in his first year of life before we adopted him and we gladly took them up on their offer, as it also allowed T to spend time with his foster brother – both of them pictured at top at ages 1 and 3.

Sleepovers were a fun tradition for me when I was T’s age, spending summer and holiday weekends with my cousins.

There are precious memories associated with sleepovers and I was glad T was going to experience this.

As his foster family live an hour away, we met up halfway with his foster dad and brother at a hardware store parking lot.

His foster dad gave us a few garbage bags of hand me downs T’s foster mom packed for him.

Nothing suspicious at all about three men exchanging a young child for garbage bags in a parking lot. 😂

His foster dad told us to relax and not worry.

I joked out loud, “We’re changing our names, address and phone numbers after you leave.”

The boys were excited to meet up.

As we watched their car drive away, I felt sad, because the hubby and I had never been separated from T the same time like this before.

But we also recognized this was a rare gift of respite and time to ourselves and we were going to take full advantage of it.

We went to the movies – Wicked, awesome and Ariana Grande is Oscar worthy – then dinner.

It felt strange coming home to a quiet house and not having to struggle with T at bedtime. But boy did I miss him so much.

Despite vowing to take full advantage of a night off, I passed out shortly after 9! 😂

It was equally strange waking up the next morning without T.

“It feels weird not being called a fucking bitch or to shut up during breakfast,” I told the hubby.

We had an entire morning of quiet relaxation. I savoured my coffee, reading, relaxing. Then shortly after lunch, we made plans by text message to meet up with his foster family for pickup.

I jokingly replied to their first text, “Who is this?”

T had a great time during his short visit. His foster dad took the boys to the movies, Moana 2, then they played at home.

His foster mom said T did great, had fun, was very polite, helped tidy up and the boys played well.

She asked what his new liquid medication was and without skipping a beat, I said, “Holy water.”

It’s called Amantadine, in case you thought I was serious.

We said we’ll plan to do this again and we thanked them for this wonderful experience for T and for giving us a break.

When we got home, T told the hubby that he had a lot of fun but he felt bad for leaving quickly and not saying bye and giving us a hug.

So he stood on the couch and gave his daddy a big long hug.

It was nice to be missed by our T. 🥹

Window to His Soul

Art is healing, inspiring, a form of self expression and for caregivers, a glimpse inside their children’s thoughts.

Before Christmas break, T’s teacher sent home his fall school work, which included his journal.

This past week, I started reading his daily journal entries and they are a delight.

I remember my very first journal, a yellow notebook Mrs Smith gave me in Grade 3, and we had 15 minutes every day to write in it.

Journal writing became a favourite activity, through to Grade 6, and I easily filled the pages.

It helped me discover an early love for writing and I keep those worn journals in storage.

In contrast, writing has never been an interest for T, so it’s nice to get a look into how he expresses his thoughts.

I love this one above about him wanting to be a doctor (typos edited):

“The job I want to have is a doctor. I want to be a good person and save people. So they’re not in danger. So they’re not sick. So they feel better again. I want them to feel healthy and so they are healthy. I want people to have a long and healthy life with their friends and family.”

I read the above on Tuesday, the day before Ma’s 1-year death anniversary. She’s always wanted a doctor in the family – and maybe her 蔡安禄 (T’s Chinese name) will make her wish come true. 😊

Then there’s this lovely one below, titled “Helping Others” (typos edited) showing us his caring heart:

“I can help someone by standing up for other people that are being bullied by others. If someone is pushed down, I can help them up. If someone is hurt, give them some ice and tell a teacher. If someone is alone, play with them or talk or even tell what’s wrong or also walk with them too. I can also help if they are sad. You can help them feel better by telling about their feelings that will make them feel better.” 🥹

This one below (typos edited) about what he thinks is the hardest job in the world made me smile.

“The hardest job in the world is a fisherman, because they have to wake up very early and go to sea. They have to catch thousands of fish to sell it to stores. They have to sell enough fish to pay their bills and to pay their boats. They have to also pay their workers.”

Glad to know T understands basic economics! 😆

I am diligent about keeping T’s work over the years – writing, artwork, tests, etc.

They are priceless and capture moments in time and his incremental growth.

Looking at his journal entries made me think about the pandemic years of virtual schooling when I nearly institutionalized myself when teaching T how to print letters using an app called Handwriting Without Tears (oh, there were many tears) and the year after when he started to learn to write simple sentences.

T’s penmanship needs improvement. Is he writing at grade level? Probably behind. But we are moving at his pace – and that’s ok.

Like an archaeologist tracing the evolution of society through uncovered artifacts, T’s invaluable school work helps us trace, celebrate and preserve his journey and growth – and gives us motivation and hope about what are yet to come.

Photo at top: T’s melted bead art created using a bead art set received for Christmas. More about this in a future post.

Finding A Big Brother Mentor for Our Neurodiverse Son

This is a tale in two parts and one tail.

One of our goals for this school year is to help T build positive peer and social relationships.

These are often cited as challenges for individuals with FASD for reasons that include dysmaturity, regulation and impulsivity.

As kids with FASD get older, research has shown they often want to fit in and this could make them susceptible to negative influence.

I can see this emerge in T. His teacher and CYW tell us he is well-liked in school but maintaining friendships can be a challenge.

So we want to get ahead of these issues.

On a school night in late November, we welcomed a volunteer from a dog therapy organization whom we first met at a family event in 2023.

I had reached out to the coordinator to see if T could be matched with a mentor for monthly visits.

The young volunteer lived nearby and he has a young Yorkie named Rocket.

This visit to our home was a test run to see what the chemistry would be like between T and Rocket.

The hour-long visit started off well with T calmly playing and petting the dog.

As the hour progressed, T got increasingly excited and tried to get Rocket to chase him, and the poor pup withdrew and became quiet.

We could tell this was going to be a one-time visit and sure enough, the coordinator let us know a few days later she will look for a different match.

I shared a few suggestions: find a dog that is calm tempered to contrast T, weekend visits as T is often “done” at the end of a school day, shorter visits, and if possible, find an FASD-aware volunteer.

Such is the life of special needs caregiving. You try things – some work, some don’t – and you move on.

In early December, the hubby, T and I met with a coordinator from Big Brothers Big Sisters, a leading mentorship organization for youth 9-17.

I had submitted an application at the suggestion of T’s CYW and we were asked to come for an in-person intake meeting.

It was the end of a school day and T was a bit testy but I didn’t mind, because it was good for the coordinator to see T’s entire self.

He started by interviewing T for 30 minutes.

He asked T if he knew what a mentor was going to do with him.

T replied, “He’s going to spend time with me, so I don’t have to bother my parents.” 😂

He also asked about T’s interests and T maintained his endearing candor.

Favourite school subjects: “Math and recess.”

Most important people to him. He pointed at the hubby and I. 💕

The coordinator then interviewed the hubby and I in another room, while T played by himself.

We spoke frankly about our hopes and goals and the ideal mentor, including someone who is FASD aware.

At the end of the interview, we went back to the other room and T had tidied it up on his own.

What a nice impression to leave off on.

A week later, we completed a mandatory online orientation session and were then advised we are officially accepted into the program!

And now, we wait for T to be matched with a mentor, which could take a few months to a year.

Ideally, we can begin the mentorship during T’s Grade 5 year this September, which will be his final year in his present school, the pivotal transition to middle school.

If we are matched, we would commit to a one-year mentorship and T would meet independently with the mentor for two hours every week.

These initiatives take a lot of admin work and can feel draining to do on top of work and our other extra curricular activities.

But the hubby and I see the value of mentorship on T’s longterm development and it’s why we persist, experiment and hope for the best.

T participating at a horse therapy program hosted by Surrey Place’s FASD Caregivers Program at the CARD Stables in late November. The owner said T has noticeably improved since his first visit the year prior.

Photo at top: T playing with a new kid at a horse therapy program organized by Surrey Place in late November.

Visiting the Real Life Schitt’s Creek

We kicked off 2025 with a daytrip to the real-life Rosebud Motel from Schitt’s Creek, located in Orangeville, an hour drive from Toronto.

The drive was relaxing. The highway and roads were quiet and there was light snow further north.

Schitt’s Creek is a beloved Emmy-winning Canadian comedy series that ran from 2015 to 2020.

It tells the story of the wealthy Rose family, who lose everything after their business manager embezzles the family business. They relocate to Schitt’s Creek, a small town they once purchased as a joke and the show chronicles their humble new life living in a motel.

I started watching the show after my interest was piqued when its final season swept the Emmys in 2020, winning best show, writing, directing and all four acting categories.

The show’s amazing cast, remarkable character growth and dry humour got me through the early pandemic and I highly recommend it to everyone.

The motel in Orangeville was used for the show’s exteriors. It is currently closed but judging from the fresh tire tracks on the parking lot, there were other recent visitors!

The show’s interior motel scenes were shot at Pinewood Studios in Toronto, where other shows such as Star Trek: Discovery were filmed.

The real motel interiors are tiny compared to the Rose’s accommodations.

The photo below is the immediate interior of the office, vastly different from Stevie’s reception desk!

We didn’t go inside just so we’re clear!

This is one of the interior rooms.

And this is the rarely seen rear side.

The motel has received many visitors since the show gained popularity and here was a recent message scribed by a visitor (not us!).

A few days prior, T and I drove to the town of Goodwood, an hour drive from Orangeville and 30 minutes from our home.

Located all at one street intersection were the real life locations of the Rose Apothecary…

… Cafe Tropical, closed and vacant…

… and Bob’s Garage.

On the fourth corner of the intersection is a lovely restaurant and bakery, where I picked up a sausage roll for myself and a chocolate brittle for T to enjoy on our drive home.

It’s been interesting to learn about the show’s filming locations.

It turns out my family used to live down the street from the fictional Elmbridge Manor, one of the venues David and Patrick looked at for their wedding in the final season.

The real life venue is called Graydon Hall Manor, located in North York, Toronto. My family lived in an apartment down the street and my elementary school, Rene Gordon, is a five minute walk around the corner from the manor.

The surrounding neighbourhood is anything but country roads and is much more modest than the fancy manor would suggest!

For those curious about what David and Patrick’s wedding would’ve looked like at the manor, here’s a photo from a wedding the hubby and I attended in 2011. It was a beautiful ceremony, although no Moira officiating with a long blond wig!

Schitt’s Creek, at its heart, is about a family that takes an unexpected detour in life and the humbling lessons, remarkable growth and unintended hilarity they experience.

The show resonates with me as a special needs caregiver because I can relate to what it’s like to have things not work out as imagined and growing from these circumstances with hope, humour and heart.

We took a different route home from Orangeville, driving through a 30km stretch of country road, enjoying the calming scenery of snow-dusted evergreens and fields.

Taking in the detours felt like the right tone to set our intentions for this new year ahead.

You’re Never Fully Dressed Without A Smile

Christmas was full of relaxation and melancholy.

We kept plans to a minimum – family dinner on Christmas Eve and dinner with friends tonight – and otherwise, lazy days at home.

On Christmas, I opened my eyes at 7 am and T’s head was poking through our door like a ferret. I quickly shut my eyes, but it was too late.

So we all got up to open gifts. I love that T still gets excited about Santa.

He asked to put out carrots because Santa is fat and 1,050 years old so he needs to be healthier.

“Yes, Jenny Craig,” I said, the reference going over his head.

The hubby got me wireless headphones I’ve been wanting for my commute and workout. I also got this awesome custom Funko from a colleague.

T got toys and clothes from family, friends and his CYW. It never gets old watching him open gifts.

His grandparents got him a cool marble race track builder, which helps him exercise STEM skills. He’s so good at figuring these things out.

My goal for the holidays was to recharge. Lots of sleeping in, binging shows (Squid Game Season 2 is excellent) and spending time with T.

Yesterday morning, I took T to the dentist. I always find it ironic how calm he is during teeth cleaning which is pure sensory overload.

The hygienist praised him for being excellent and let him play with the suction tube while she went to get the dentist.

You’d think this kid was at Club Med by how relaxed he was. 😂

With a smile good as new, we set off to run errands; the first stop was the bookstore.

I told T to sit on a chair near the entrance and gave him my phone to play with.

“What if someone kidnaps me!” He shrieked and the older man sitting next to him looked at me.

“Don’t worry, they’ll return you very quickly.”

The holidays have been a season of lighthearted fun and heavier reflection.

I gave myself the space to acknowledge the recent losses and to not grin and bear the harder feelings.

Because they pass.

I allowed myself to embrace the joy of the season, because smiles and laughter are healing.

Earlier this month, we enjoyed T’s school’s annual holiday concert. This year’s theme was broadway.

T was part of the opening number, standing at the front row, singing “All Aboard for Broadway.”

Dressed in a white shirt with his hair combed nicely to the side, T’s smile was infectious. I was so proud of his confidence.

T’s class appeared again midway through the show, singing “You’re Never Fully Dressed Without A Smile” from Annie.

The number opened with a skit and T was one of the students who had a solo speaking part – at the 1:41 mark. He spoke clearly and with a smile.

Stationed in the second row, T then did a great job singing and dancing – even brought out jazz hands.

It brought a huge smile to our faces.

Lazy Weekend

I’m on staycaytion the next two weeks and my goal to do nothing got off to a wonderful lazy start.

I stayed in PJs all weekend and binged Abbott Elementary – hilarious and highly recommended.

I told T he’s going to daycare during the break and he better not screw me over by getting sick again.

He had a weekend free of his tablet, the primary source of his disregulation, cuz I wanted respite from a screaming child.

He had to like, you know, use his imagination or whatever 9-year-olds do when they don’t have Internet.

I emerged from my cave during the last hour of daylight to visit loved ones who had an even quieter day: Pa, Ma and my sister.

I tried to guilt T to come with me by speaking in Ma’s Filipino accent – “T, Ama misses you.” – but it was -17 out and he wanted to stay in the warmth.

It didn’t stop him, however, from coming out dressed only in shorts to shoosh me away with his hands while I waited in the driveway, hoping he’d change his mind.

“Love you!” he screamed and waved as I drove off.

I’m approaching Christmas with mixed feelings.

Christmas 2022, Ma came over for hotpot lunch. My sister, who had Stage 4 cancer, was in a lot of pain so we took her to Emergency. She never came home and I spent New Year’s Eve planning her funeral.

A few minutes into Christmas 2023, the hubby booked me a last minute flight to Manila after I FaceTimed with Ma, in the hospital, and my gut told me I had to see her.

I spent New Years 2024 signing forms to admit her to ICU, which she never left.

I want this Christmas to be super boring.

A cemetery is a reliably uneventful place and I appreciated the quiet visit with family. I think of them often.

I took the long walk back to the car so I could circle the pond. I thought the other lonely residents would appreciate a visitor too.

I noticed a tree wrapped in Christmas lights and I thought of Pa, who loved Christmas.

Then I heard an old man chanting in Mandarin. I looked all around me, thinking I’ve lost my damn freaking mind, then saw the small sound-emitting Buddha figurine on a gravesite, half covered in snow.

Then I bought a turkey for the hubby to make on Christmas so I don’t have to cook for a week. 🤭

Laughter is the best medicine. Binged through the first two seasons this weekend. Two more to go!

The Scarecrow

What are the urban legends we tell to keep people in line?

On a recent Sunday grocery run with T, as I parked the car, he said, “There’s an owl on the roof.”

I love that T notices things that we normally miss.

There indeed was an owl on the roof of the supermarket, pictured above.

T wanted to take a closer look and I realized it wasn’t moving.

T borrowed my phone so he could zoom in with my camera – he took the photo above – and indeed it was a fake owl!

So I told him it was like a scarecrow.

“But it’s not a human and is not made out of straw,” he refuted.

I thought about how scarecrows manifest in our lives as caregivers.

We’ve been struggling in the last while with T’s disregulated moments – when the verbal aggression and meltdowns happen that seemingly flip the moment upside down.

It got to the point I had to fake call the police to get him to calm down.

Yes, these YouTube videos exist and they are gloriously entertaining.

T would stop his meltdown and come begging us to cancel the call.

The first time we did this, the hubby and I were in stitches, dying of laughter.

Yes, I’m aware we’re not winning a parenting award, but we did it out sheer exasperation.

But the hubby and I made a pact to not have to resort to this again, because it’s not effective.

The FASD brain is not wired to understand consequences.

Challenges with impulsivity, regulation and executive functioning mean this will be an ongoing challenge and we’ll need to use different strategies, including modifying T’s environment.

So it’s a work in progress. Life is a work in progress.

We focus on the wins and let go of the moments – and the guilt and regret – of when you could’ve done better in the heat of the moment.

Celebrate the wins, like T gaining self-help skills as my companion during our Sunday grocery runs, one of my favourite Papa and T bonding rituals.

Earlier in November, our family went for our annual flu and Covid booster shots.

T proclaimed beforehand he will be brave. The year before, the entire pharmacy heard his profanity-laced meltdown and he had to be held down by the hubby and several staff.

Just our luck, it was the same pharmacist this year.

But T kept his promise, he didn’t make a fuss as she rolled up his sleeve. Needle in and out in the blink of an eye.

While T was waiting for his shot, an exasperated mother was trying to calm her daughter down.

As they walked in the room for their shot, T turned to her. “Hey, good luck,” he said in solidarity. 🥰

Didn’t calm the child down, but he tried! Nothing is more soul soothing than a meltdown from a child that’s not mine. 😂

Fears can be conquered, we just gotta give our children space to move at their own pace.

It’s like this brave pigeon below that figured out something was off with the owl.

Don’t mess around with Toronto pigeons. They’ll eat your children if they have to.

Now there’s a thought.

Hide and Seek

We’re wired for connection and time with people can be healing and open our minds.

I was delighted to be invited back to The Heart of the Matter podcast to speak with Wynne Leon and Vicki Atkinson about finding community.

Connecting with Wynne and Vicki is always a joy. Our chat reminded me about recent talks I attended by the CEO of a social connection movement about the importance of community connections in combatting the loneliness epidemic.

I’m blessed with amazing family, friends and colleagues, so I don’t consider myself lonely.

But parenting a child with FASD can feel isolating at times and the antidote to isolation is human connection.

I am thankful for the amazing community in our city and online, because I am reminded the hubby, T and I are not on this journey alone.

Connecting with others helps us do our part to spread kindness in an increasingly polarized and uncivil world.

As I shared with Wynne and Vicki, I recently deputed at a town hall hosted by our school board’s Special Education Advisory Committee.

I was called to speak first and after I did my part, I stayed and listened to other parents depute and advocate for their children and communities.

We were strangers to each other, but we stayed till the very last parent deputed an hour and a half later, to support each other and to show the board we were united.

The aforementioned social connection CEO shared this thought provoking “Worlds Apart” ad by Heinekin with my colleagues and I.

This ad reminds why I do my part to raise awareness about FASD, because it is only through connection that minds and hearts can be opened.

Perhaps the most important connection to nurture in my life is with T.

I’m making a big effort this fall to widen T’s community connections and I’ll share amusing stories over the next few posts.

The past while has not been without challenges and there are moments when I wanted to retreat within myself – and I am grateful for the moments the hubby shouldered the load, because I can see the wear and tear of the challenges on him.

But hard times always pass and we get through them by connecting with others.

One of our dearest friends came over recently for a movie night and it’s been ages since we enjoyed junk food and a cheesy movie together.

Today was our first Sunday without soccer lessons, which are done until the new year.

So I took it easy this morning. As I sipped my coffee and cleared out my work inbox, T crawled across our dining table and placed his chin on the top of my laptop.

Someone wanted my attention. 😂

So I called work a day and we spent a chunk of time playing hide and seek.

He’s getting good at finding hiding spots!

Then T and I went for our Sunday grocery run.

“Do I have to go with you?” he asked me.

“You don’t have to, but it would be nice if you joined me. I always enjoy and appreciate your company,” I said.

Then he smiled and put on his coat.

We have a ritual where T likes to stand at the front of the cart while I push him. He imagines we’re on a train and narrates our journey from one station to another as we gather our items.

It’s silly fun that brings out the warm fuzzies that hide in the shelter of the heart.

Miss Americana, Taylor Swift

T and I celebrated the hubby’s birthday with a night out at Taylor Swift’s highly anticipated Eras Tour show in Toronto.

We had purchased the tickets, nosebleed seats, last Fall and were lucky to get them at face value.

The hubby’s sister visited us for his birthday week and it was nice they got to spend time together and she joined us for the concert.

None of us consider ourselves Swifties, but we enjoy listening to her songs on our drives and the massive buzz in the city was inescapable.

The hubby made friendship bracelets for us, which we all proudly wore.

Our show was on a Friday night and a PA Day, so T was both more relaxed and we also didn’t have to worry about the day after.

We took public transit and T was a bit overexcited on the subway, but we all expected it.

If the hordes of fans dressed up for the show didn’t help with wayfinding, the signage at Union Station certainly did!

Rogers Centre got into friendship bracelets too.

After a wonderful opening set by Gracie Abrams, the main event started around 7:30.

And boy, did the stadium filled with 50,000 fans just simply lose it from the opening song, Miss Americana and the Heartbreak Prince, and didn’t let up till the end.

For nearly four hours, Swift sang through fan favourites that spanned all albums from her 17-year career and the crowd was under her spell.

I see and get the Swiftie appeal now. The joyous energy of fans singing and dancing along was both deafening and positively infectious.

T enjoyed most of the show and thankfully, we remembered to bring his noise buffering headphones after forgetting to do last time.

There were moments when the show became too much for him, so he played on the hubby’s phone, or sat on my lap and asked to be hugged, or hugged the hubby. By the last hour, he curled up on his seat to sleep, covering his face with his jacket.

November is a surreal month for me.

Three days before the show was my sister’s birthday and this was the 2nd birthday we’re observing since she passed away. Three days after the show was the one year anniversary of my dear friend Jenny’s death.

Sandwiched in the middle was the hubby’s birthday and it was a joyful celebration – a reminder that hard times pass and to fill our lives with as many positive memories as we can.

I am grateful we got to experience this special evening with T.

Toronto is the 2nd last stop in Swift’s 2-year, 149-show tour that spanned 5 continents – and we caught the 8th last show of this historic tour.

I only took 1 video during the show and it was of a sweet moment when T was fully engaged with “Style,” his and my favourite Taylor Swift song.

People often remark what a handsome kid T is. I captured a wonderful candid photo of him on the subway that I won’t post but will describe with Swift’s poetic lyrics:

“You’ve got that James Dean daydream look in your eyes… we never go out of style, we never go out of style.”

Win as a Team

Watching our 9-year-old T enjoy soccer lessons reminds me of why we work as a team.

T is halfway through his first round of lessons and it’s been a fun Sunday morning family routine.

The hubby and I signed our soccer fan up for these free lessons offered at a City-run recreation centre to help him build social connection, to learn how to play well with others and to have fun.

It’s amusing watching the kids play, because as a whole, they can all benefit from honing their team work skills – disability or otherwise!

Kids kicking the ball aimlessly or not passing and playing together. I chuckled when one of the goalies left their post so they could try to score a goal on the other side themselves! 😂

There are a few kids who are quite good and during a recent game, they all ended up on the same team.

T watched them play another team and when it was his team’s turn to play this well-coordinated team, he said out loud, “Our team is cooked!” 😆

And as he predicted, the other team won – although T scored his first-ever goal during this game and I cheered quite loudly!

On the drive home, we told T it’s important to work as a team and that means spreading out, each person playing a role, passing the ball and keeping an eye out for an open teammate. Because when one person scores the goal, the entire team wins.

Like soccer, teamwork is essential for families, especially one navigating complex special needs, such as fetal alcohol spectrum disorder.

It’s crucial the hubby and I work together, especially during challenging moments, because this life is exhausting.

Working as a team includes dividing roles at home: I do groceries with T and cook, the hubby cleans; I do math homework, the hubby does French; we take turns driving T to swim lessons on Saturday mornings; the hubby does school drop off, I do pickup on days I work from home. And so on.

When one of us is having a hard time with T, often me, we tag out and the other covers. It’s like guarding our goal posts, the reserve of energy and sanity required to get through this wild ride.

Just like dysfunction can ruin a team’s chances, caring for loved ones with FASD can cause family dysfunction and chaos that feel destabilizing.

I can see why relationships are tested by this caregiving journey and I have even more compassion for those doing this on their own.

But you dig deep and remind yourself why you want to get through these moments – the child that you love – because when you play as a team, you win as a team.

During T’s most recent soccer lessons, he’s taken up the defender role, staying close to the goal post, and we noticed he is passing the ball more and looking for an open colleague first.

One of his teammates scored a winning goal and he cheered loudly with a big wide smile. But not as loudly as his Papa cheered.

The Simple Life: Exploring Village Historique Acadien in New Brunswick

Less is more. Tight knit community connections. Want not, waste not.

These were thoughts that came to mind when we stepped back in time during a visit to the Acadian Village in New Brunswick in August.

Le Village Historique Acadien is an historical reconstruction that portrays the way of life of Acadians between 1770 and 1949.

Our immersive experience through over 40 buildings was enhanced by great weather, although it was quite buggy at times.

Our leisurely walk started with the oldest simplest homes.

It was remarkable to see the living and dining quarters all in one tiny room, often for large families, many of whom slept on the floor.

Later homes had separate bedrooms, but often shared by multiple family members.

I noted to T how lucky he was to have his own room and a comfortable bed to sleep on.

I noted other things we take for granted today, such as not needing to chop and store firewood to warm the home – nor needing outdoor cooling rooms, as we have appliances.

Having said that, if there was a zombie apocalypse, this village is where we’d hide out!

I recalled with a chuckle the last time the hubby and I visited the similar Black Creek Pioneer Village in Toronto.

We walked into an old mill and a young staff member, dressed in period millworker clothing, was browsing the Internet on his phone. 😂

“We have a time traveler in our midst,” I mused.

What made the Acadian Village experience so fun was all the staff were fully engaged in their roles.

From the school teacher who ran the single classroom for all grade levels…

… to the man who worked at the newspaper…

… to the general store owner.

Not surprisingly, T enjoyed seeing and interacting with the farm animals most. 💕

I enjoyed seeing the village crops that grew and were used for the homes and onsite restaurant.

Check out this old-fashioned outdoor oven. I’d love one of these!

Around lunchtime, the home owners prepared and ate lunch, and visitors could watch them do so the old fashioned way using beautiful cast iron.

Our stomachs started grumbling, so we enjoyed lunch at the onsite restaurant, with simple meals prepared to mimic the past.

The more modern homes in the latter part of the walk were beautiful, such as this stone manor with its dreamy kitchen and dining room. Love it!

As we crossed the charming covered bridge that served as a transition from past to present, I was moved by the simplicity of life back then.

Despite the lack of modern luxuries we enjoy such as digital technology, there was value placed on hard work, using up and not wasting limited resources and the importance of family and community to thrive together.

There were important lessons to be learned here for T and it’ll be interesting to see what he thinks of this daytrip one day.

Story of My Life

I made it home just in time for a special unexpected bedtime routine with T.

With thanks to the hubby, I had a rare weeknight out to support colleagues at an event.

As I texted the hubby on the subway ride home, he let me know it was a rougher night; T was very disregulated and had aggressive meltdowns.

But thankfully, he had calmed down when I got home to put him to bed and unexpectedly, he asked to read two books at bedtime.

We had not read at bedtime in a while. He picked two board books we kept after a recent declutter: Toronto ABC and Canada ABC by Paul Covello.

T had long outgrown these books but they were books we read countless times over the years.

With his head rested on my shoulders, we took a trip down memory lane, as T pointed out where we had been together over the years.

Like Toronto’s Distillery District, where they host a charming Christmas market every year.

Or taking the ferry over to Toronto Island, where T went on his first amusement park rides and I have a vivid memory of him enjoying ice cream under the shade of a tree.

Countless walks at Nathan Phillips Square, including after a recent event to support FASD Awareness Day.

The memory of T’s first time at Pearson Airport at age 1 looking at an airplane as we waited to board a flight to visit his grandparents in New Brunswick for Christmas.

“I’ve been here. The ROM!” T shouted as I turned the page.

“Yes you have,” I said, reminding him he’s been with his class and his cousin, A.

T should be for T but in this case, it was the CN Tower, where he bravely walked on the glass floor and I watched from the opaque floor nearby.

The many visits to the waterfront, where my late sister lived.

How quickly time flies from when T first visited at 15 months old on a stroller.

And the Zoo, which he visited for the first time with my late Ma. I had to pause and look at this photo below for a moment.

Last Wednesday, the entertainment world was rocked by the sudden death of One Direction boyband member, Liam Payne.

I’m not a diehard fan, but have memories of their hit song “Story of My Life” playing during family roadtrips over the years.

What struck me most was how young he was and the tragic circumstances that surrounded his death.

In the back of my hubby and my mind is the fear of T being an adolescent with FASD going down a path of mental health and addiction challenges, as Payne reportedly struggled with.

Statistically, the odds put T at risk. Challenging evenings such as the recent one certainly don’t put us at ease.

The day after Payne’s death, the hubby and I accompanied T to his cross country meet.

He and four schoolmates made it to round 2, where T would compete with the Top 40 Grade 4 boys from four quadrants that competed separately in round 1 – his first time in the second round.

The hubby and I already had the day off so I was able to attend T’s meet for the first time since he started doing cross country three years ago.

The bad news is T did not finish in the Top 20 and didn’t advance to the final city-wide race.

He was disappointed but it quickly wore off. However, he did very well still! 40th place and only 20 seconds behind the 20th place. That’s amazing!

I cherished being there that day, to see T play with classmates and random dogs, to see him ask for good luck hugs from the hubby as he waited at the starting line, to see his face light up when we screamed and jumped as he ran past us at the cheering line mid route, and to be there for him at the finish line.

Like a book or a cross country race, our life story has a beginning and an end. These are certain.

The middle is less certain, despite educated guesses, statistics, hopes, fears and fleeting successes and challenges.

And that’s what makes life so worthwhile.

Running for Life: “I’m Not a Quitter”

Thanksgiving is quieter and simpler this year.

Two years ago, I hosted dinner for Ma and my sister; the latter had just moved in with us after receiving her terminal cancer diagnosis.

Last year, Ma was at the Philippines for an extended visit and I don’t remember if we even did anything for Thanksgiving.

So much has changed in just two years.

Life doesn’t stop and we keep moving, because we want to get as much from this journey before the finish line.

The start of a new school year means the start of cross country season.

For the third year, T signed up for the cross country team.

He enjoys running and the daily practice runs at school are good for him.

At the beginning of October, his school participated in the first cross country meetup of the year.

He did well in Grade 2 but not so well last year.

We reminded him to pace himself, to keep running and to make a hard sprint at the end.

The hubby took the day off and volunteered as a helper, so he got a front row view of the race.

T did great! 28th out of over 100 boys.

Even better, he qualified for the next meetup, the first time he’s advanced to the next round, mid October!

We are all so thrilled and proud of him!

Every morning, I play Wordle.

For the last two years, faith has been my opening word.

It’s something I reflected on through my family’s adversity. How do you keep going through challenges and have faith everything will be ok?

The lesson I’ve learned is things don’t always turn out ok. But despite things not turning out the way you hoped, you will get through it.

On September 27, 2024, after over two years, faith paid off.

This past Tuesday, T’s school hosted their annual curriculum night, where parents got to visit the classroom.

It was nice to tour T’s classroom and to see the strategies his CYW have put in place to help him be successful.

They are currently dealing with task completion and negative attention seeking behaviour – so we’re strategizing to find ways to help T.

Present day me is responding more calmly than me two years ago – so it’s nice to see my growth! 😆

T’s class were asked to write a letter to share with their parents that night and this was T’s lovely letter for us. 💕

Thanksgiving is quieter and simpler this year.

It’s just the three of us and the hubby is preparing a small cut of turkey breast and homemade stuffing; T is helping me cook Hong Kong Tomato Beef.

Later this week, the hubby and I will cheer T on at round two of the cross country meetup.

It’d be amazing if T made it in the Top 20 so he could advance to the final round: the city-wide championship.

Regardless of what happens, the experience in itself is the blessing.

It’s not always easy being T’s parent, but he’s the reason I run for life and don’t quit.

As we help him continue to process his FASD diagnosis, we remind him it’s not the finish line that matters – but the process and journey of practice, persevering and not giving up.

On this Thanksgiving Day, these are reminders that there is so much to be thankful for.

Sports as Social Medicine for Neurodiverse Kids

On the last Sunday morning of September, T woke up excited for his first soccer lesson.

T loves soccer and his CYW suggested enrolling him into lessons.

Sports is often therapeutic for neurodiverse kids, like T who has FASD and ADHD, to help burn off energy and to regulate their mood.

I also see social benefits in sports.

One of our hopes is that soccer lessons will also help T build teamwork skills and social connection, two areas of need.

T was so pumped for his lessons that he went to practice in the field behind our home before we headed off to class.

We ran into a neighbour whose son once kicked his ball into our backyard.

His son practiced kicks by the goal post on the other side of our fence for hours in warm weather.

The dad told T to keep practicing because his son is now in university in Portland on a soccer scholarship. 💕

A minute before T’s first lesson started, he blurted out that he forgot to put on underwear. 😂

But the class went well!

There were about 20 kids, mostly boys and 1 girl.

They started with warm up jogs then practice drills of soccer skills and then spent the last half of the class playing in randomly assigned teams.

Each team got to play twice.

Despite losing both his games, T had lots of fun and almost got a goal in.

He took the losses in stride, and I’m glad, because sportsmanship is a good skill to learn!

As we watched him play, the hubby dreamed out loud about T going to medical school on a soccer scholarship while working towards his first gold medal for diving in the Olympics.

I just wanted him to make it to the end of class without his shorts sliding off. 😆

After the game, we celebrated T’s first lesson with lunch at Dumpling King, where T finished a plate of his favourite pork dumplings.

The second class this recent Sunday also went well.

T’s team won the second of their two matches.

Even though T didn’t score the winning goal, we both cheered out loud when the ball went in. I may have screamed excessively loud. 🤣

I loved watching T’s eyes light up, hands thrown up in the air and big open smile and cheer.

I hope he learned that when he plays as a team, everyone wins together.

As we left the recreation centre, T asked to slow down so he could say bye to one of the kids.

As our car left the parking lot, he asked to roll down the window so he could say bye to the kids.