My Life With T

Love Sensation: There’s Nothing That We Can’t Do

Last month, I had the privilege to participate in the Legislative Assembly of Ontario to observe the second reading of Bill 106, an Act to proclaim Developmental Disabilities Awareness Week – proposed by MPP Billy Pang.

I’m a proud member of Surrey Place’s Family Advisory Council and the organization was one of several invited by the provincial minister to support and observe the debate.

As a caregiver, I see first hand how awareness helps improve lives and outcomes, to increase understanding, to dispel hurtful misconceptions and reduce harmful stigma, and to further inclusion.

“When I feel alone

I always wanna bring you near

Cause you bring a smile right here

You chase away my darkest hours

When we go walking

sunlight’s all around you

It’s all around you

And did I mention

You always bring me back

with your pure intention.”

It was my first time observing this procedure and it was wonderful to learn about our democratic processes.

I appreciate the rigour in which legislation is introduced, debated and passed.

At Queen’s Park, where the Legislative Assembly of Ontario meets.

I am also mindful and not naive to the political song and dance – and the symbiotic relationship between politicians, service organizations and citizens.

It is a necessary process and relationship.

As a voice within the ocean of caregivers, I want to help get the message across that awareness alone, without funding and support, is not enough.

But it is an important first step in education, advocacy, social connection, and necessary change to make the world a better place.

The Act needs to pass a third and final reading – likely over the summer – before it is passed. Fingers crossed!

This moment was a reminder of the importance of showing up as a community for those we care about most.

The community showed up to observe and support the second reading of Bill 106.

We’re now just 10 days away from the end of Grade 5 and the start of T’s summer break.

It’s been an interesting and challenging year – I’m ready to move on.

This year has reinforced to me that FASD is a little known and understood disability and that as T gets older, it will lead to further misunderstanding and challenges for him and us, as his caregivers.

But despite how hard, heartbreaking and soul-crushing it can feel on some days, I refuse to let it wear us down.

There’s so much good, light, and positivity to celebrate and to build on.

A wonderful reminder we see every week during T’s swim lessons. He starts pre-lifeguard classes this fall!

While T excitedly counts down to summer, I’m waiting with great anticipation for Madonna’s new album on July 3 – a thematic sequel to her beloved 2005 album “Confessions on a Dance Floor.”

She’s released three teaser songs so far, the latest being “Love Sensation.” Naturally, the song is on repeat during our drives.

“Let me guess,” T says from the back seat. “This song is called, ‘There’s nothing that we can’t do?’”

It’s a good guess, because it’s a line M repeats throughout the song.

As an adult, I am well aware that “nothing is impossible” is a fallacy. But it certainly doesn’t mean we shouldn’t give life our best try.

Together.

Because in the hardest moments, we tap into something deep within us that makes us feel that there’s nothing that we can’t do.

Together.

Get Your Child What They Need at an IPRC Meeting

We recently attended an IPRC meeting and took another step in readying T for middle school.

IPRC stands for Identification Placement Review Committee and it is made up of at least three school board staff, including a principal and psychologist.

The meeting has three functions:

Identification: To decide if a student meets the Ministry of Education’s criteria for an exceptionality.
Placement: To determine the most appropriate school setting to help the student succeed, prioritizing regular classrooms before segregated special education classes.
Review: To review the student’s identification and placement at least once every school year to see if the supports are still appropriate.

Following an IPRC decision, the school is legally required to create an Individualized Education Plan.

Nature is the remedy. We went for a family hike to the Bluffs after work on Friday. T mentored a younger boy on how to pick seaglass.

Prep work is key to success

We’ve never attended an IPRC meeting and I’ve heard horror stories that describe it as a battle, with parents often walking away unhappy.

We were lucky that T’s special education support in his school keeps a watchful eye on him.

At a School Services Team meeting at the start of the school year in September, she recommended that T get a psychological assessment from the school board ahead of the IPRC.

Although T already has a FASD and ADHD diagnosis, received from an external organization, playing ball with the board goes a long way.

We’re thankful that T got his assessment in December – as waits could be lengthy – and the psychologist provided a recommendation for an exceptionality of a learning disability and for T to be placed in a regular school with supports.

The hubby and I were thrilled, because the new principal – whom we are not fond of and the feeling is mutual 😂 – keeps trying to get us to put T in an intensive support program.

The IPRC meeting was only 20 minutes, so the hubby and I wanted to be super prepared.

I also got IPRC advice from T’s tutor and his psychologist, as well my psychologist.

“You can do all the talking,” the hubby said. 😂

T found two blue seaglass, which is rarer.

We went into IPRC Guns A-Blazing

Our meeting was held virtually and I had my notes ready on another screen.

In addition to committee members, we were joined by T’s principal and teachers. His special education support could not join us.

The committee asked us to start the meeting with our remarks and I covered a few points:

T has many strengths, including being bright, funny, caring and good in sports.
Because of FASD and ADHD, T struggles with executive functioning, regulation, focus, impulsivity and hyperactivity.
He is able to achieve success because of supports the school has put into place since JK. He’s had a challenging year, because of changes to supports; I held back from saying it was due to the new principal.
I summarized the recommendations from the board’s psych assessment.
I read a testimonial provided by T’s special education support – and shared feedback from T’s tutor and psychologist.

The board psychologist then detailed the findings from the psych assessment. Then the committee shared their decision:

Identification – Exceptionality of learning disability
Placement – Regular classroom with withdrawal supports and in classroom support.
Review – Once a year

T’s middle school will then create an IEP in alignment with the IPRC’s decision.

We were thrilled. This is what we wanted for T. I almost stuck my tongue out at the principal.

We went biking Sunday morning and visited the geese and ducks. T fed them raw oats from the bulk store.

The day after IPRC, we visited T’s middle school and met with his new vice principal.

She also introduced us to the special education resource, who would be a support for T.

Coincidentally, T’s class visited the school at the same time as us, as part of the transition process.

T side eyed us, as he walked by us. Some of his classmates recognized us.

We held back from overdoing the hello. We didn’t want to cramp his style. He was getting to be that age after all.

This school year has not been a favourite one for our family. I still feel uncertain about middle school – but, as always, we’re taking it one day at a time.

With a successful IPRC, that is one positive hopeful step forward for T.

Finding the I in Team

I recently had the blessing to travel for work and was away from home for four days.

It was my first out of province work trip. The 2013 conference at Buffalo, New York does not count, because I could see Ontario and Canada, across Niagara Falls, from my hotel. 🤣

It was an incredible two days in Calgary, plus two days of travel, as part of a national leadership program I’m so fortunate to be a part of.

Naturally, I felt guilt and worry, especially as departure day drew near. What if my plane crashed or something happened to my family while I was away? You know, everyday worries. 🤭

But I had a great time and allowed myself to enjoy the experience. I had a great time connecting with and learning with and from peers across Canada.

One of the meals I prepped for the hubby (chicken parm, his fave) to make single parenting easier.

Prepping T’s lunch fruit for while I was away. I’m very Type A, I know. 😂

It was the quietness in the mornings and evenings – time with just myself – that felt jarring. No trying to move a distracted T out the door nor the battle of wills to get homework done.

As I reflect on this trip a few weeks later, I believe it’s important for caregivers to take and enjoy rare opportunities for themselves – without guilt or worry – and to remember that caregivers deserve things that feed our soul too.

Parenting a child with FASD takes so much mental, physical and emotional energy; it is a marathon with very few respite, especially when our support system is non existent.

Teamwork is essential – and I feel incredibly blessed that the hubby and I have a good divide and conquer approach.

On the weekend before I left, I prepped meals to help make single parenting easier for the hubby – including chicken parmesan, one of his favourites – and tomato beef for T, which meant three less school lunches the hubby had to make.

Finding the I in teamwork is so important. So you have more of yourself to give back to family.

Absence does make the heart grow fonder – especially when there’s a two-hour time difference.

While I enjoyed the break, quiet time, and going out for dinner with adult peers, I missed my family.

I came home with renewed energy, perspective and appreciation for the hubby and T – and a clearer head and motivation to keep forging ahead on this FASD caregiving journey.

I spent two days at Calgary’s beautiful central library. My goodness, what a breathtaking building and impressive plethora of programs and services.

Our Adoption Journey: 10 Years Later

On April 28, 2016 – seven years after we started our adoption journey – we received the call that we were matched with T.

I still remember that unexpected day: the hubby and I got an email from our social worker, who asked if we were free for a call that night.

We only heard from her sporadically by email if we had been shortlisted for a child. There were heartbreaking close calls and we eventually gave up and adopted two cats the prior summer.

My brain told me this was different but my heart told me to temper my expectations.

At around 7 pm, we were told that we were matched with not one, but two children. Not shortlisted but successfully matched.

It was a difficult choice and we didn’t have much time to decide – and our hearts led us to T.

On May 2, we met T for the first time, at the home of his foster parents, who took incredible great care of him in his first year of life.

It was love at first sight.

It was a whirlwind two weeks – of getting our home baby proofed and turning our guest room in our tiny condo into his bedroom, of notifying my work of an unexpected 30-week adoption leave, of sharing the news with loved ones.

On May 12, he moved in and we became a family.

The last 10 years are a blur.

Flashes of diaper changes, a turd in the bath, baby time and music therapy programs, walks in the park and hikes in the woods.

Adventures through building forts, camping, March Breaks in Mexico, summer roadtrips and visits to T’s grandparents’ in the East Coast.

The proud exhilaration of the many firsts: steps and dashes; words spoken, read and written; kindergarten and grade school; loss of baby teeth and the addition of braces; swim lessons.

The upcoming final days of Grade 5 and his seven-year stay at his primary school.

Our spare bedroom transformed into T’s bedroom. That was an intense weekend of prep work!

I’ve learned about life through the FASD caregiver journey.

When T was 3 and having a disregulated moment, and I was visibly struggling, a relative asked me if I regretted adoption.

I still quite viscerally remember how that statement made me feel.

I held back from saying what was on my mind and took the high road.

There’s no sugarcoating it: FASD is a challenging and lifelong disability.

Parenting T is not easy. We have many stressful moments. Each age and stage bring new challenges.

But I would do it all again.

Love does not cure a disability, but it gives fuel to keep going.

To try differently not harder.

To build a community of supports.

To speak up and demand better from bureaucracy when it feels uncomfortable to do so.

To focus on T’s many strengths and to believe in the emerging science around neuroplasticity.

I am thankful for our experiences and lessons.

I am a different person today – and our family has grown immeasurably.

But at the individual and collective core, it is anchored in love, laughter, adventure, and hope.

I’m grateful to God for the opportunity to be T’s Papa, to the loved ones and supports in our life, to the hubby for walking this journey together.

And to T. Out of billions of souls, he somehow found his way into our lives.

This seems just like yesterday, when his steps were still unsteady and needed support.

Cooking for the Soul: The Sacred Sunday Meal Prep

Sundays are for self care and cooking is my therapy.

With headphones and dance music on, I get lost in an uninterrupted hour or two of prep for the week ahead.

Caregiving for T, a child with FASD, needs me to stay organized.

With work and school during the week then chores and T’s extra curricular activities on weekends, I am intentional about this sacred time to recharge.

Cooking is a simple way to feed my soul – and my family.

Prepping meals for the week ahead saves me time, now that I’m in the office three days a week – and usually tired when I get home.

It also saves money, as I only buy what we need and I’ve cut out buying lunches when I’m in the office; I pack leftovers instead.

Home-cooked meals are also often healthier.

I’m thankful for moments by myself, focused on an activity I enjoy. So I can reinvest the renewed energy back to T.

I protect this sacred time and tell T to buzz off when he tries to bother me 🤣 – unless he asks to help, which he sometimes does. 😇

Here are some recent cooking therapy adventures – some inspired by a Korean cookbook gifted by a dear friend.

Chia Siu (BBQ pork) – It was so delightful to demystify how to make this!

Galbitang (Korean beef short rib and radish soup)

When Bloggers Connect

In our 7th year as blogging friends, I met up for lunch last week with Linda from Wandering Canadians.

It was our first time meeting in person – we work within the same downtown area – and it was lovely to learn more about her, what got her started on blogging, and her blogging process.

She commented on my blog first in 2020, when I blogged about our Northern Ontario roadtrip during the pandemic summer, pictured at top.

I’ve since been inspired by her travel adventures around the world over the years – most recently with a newborn!

I am thankful for Linda and the blogging community. You all have become a part of my life – and bless me with inspiration, entertainment, connection and friendship.

Thank you for being a part of life with T! 🥰

I can’t believe this amazing roadtrip was 6 years ago!

I was touched to receive a recent shoutout from a fellow blogger.

Ganga from Special Mom’s Blog nominated me for the Sunshine Blogger Award.

I enjoy and am inspired by her life as a caregiver for her son and their many adventures in nature and with cooking.

Thank you, Ganga! 🥰 I enjoyed answering your thoughtful questions.

What is the reason behind your blogging journey?

I started my blog, in December 2019, to do my part to raise awareness about FASD – which I still feel is little known and understood.

The blog has become an escape for me – and it’s a joy to connect with bloggers around the world.

I’m touched when people reach out by e-mail to say thanks for writing. It reminds me we can all do our part to shine light.

Do you share your blog with your friends and family? Are your family and friends supportive of your online presence?

My family and friends are aware of my blog – including my late Ma.

My loved ones understand my intentions and some also follow along. Even T is aware of this blog, although he couldn’t care less! 😊

In recent years, I also learned that colleagues stumbled upon my blog, as part of research related to their work. That made me smile.

Podcasts and Youtube are more popular now. Do you think you will shift platforms and abandon blogging?

I would love to create a podcast spinoff of my blog, with T when he’s older.

He is quick-witted, funny, and so creative. Such a personality, heart – and yes, mouth!

I would not abandon blogging. Writing is how I express myself.

Pictures are a great add on. Do you think without pictures blogging would be boring?

Pictures are essential to blogging and help tell a fuller story.

I’m careful to not share identifiable details of T. But enough details so that you get a sense of his spirit.

The first photo I posted of T on this blog. It just wonderfully captures his spirit.

Are you a big screen or a small screen person? Given a choice of music or sports on small screen what would you watch?

My iPhone is my third limb. 🤣 I consume the news, entertainment, socials, etc. through it.

I choose music. I love how the industry has thrived in the vertical media age.

Are you a cook or a person who loves to eat?

Cooking is therapy and I look forward to Sundays when I meal prep for the week. It keeps life organized and helps me unwind.

I’m not a foodie and I eat to live, not live to eat. I enjoy simple hearty meals.

How do you find time to blog and comment on other bloggers?

The blog community is a part of my life. I look forward to time each day – on my commute to work, at the gym, or before bed – to catch up.

I find it harder now to post, with work and caregiving, but aim to post weekly.

I have a long list of blog ideas that I hope to get to. Life provides endless inspiration – but not endless time and energy! 🤣

Do you think our future generations would love to read our blogs? Since everything is digital maybe fifty or hundred years from now.

I muse about how future archaeologists will make sense of our era. With digital media, our artifacts will be at a scale larger than ancient times.

What is your best blog post?

I have a few favourites but the top one is “Sharing a Child’s Diagnosis with Them.”

It is consistently visited through Google searches and it feels good that my experience can help others seeking this info.

NOFASD Australia also shared it on their socials. I felt honored by this shoutout from a respected organization on the other side of the world.

Finding Grace in the Special Needs Caregiving Journey

We celebrated Easter with chocolate for our son but for me, it’s more and more about finding grace.

As I get older, I find the Easter message of forgiveness and reconciliation so compelling, especially as a caregiver of a child with FASD.

Underlying this message is the importance to give grace – to others and unto yourself.

We had planned a lowkey Easter with T. It started off pleasant enough – with a fun night out to watch the Super Mario Galaxy Movie on Good Friday.

T woke up in a crabby mood on Saturday and – while I should know better by now – triggered me and I was not going to let a snide comment about the fried egg I made for his breakfast slide. 😂

It ruined my mood and I kept to myself in my room most of the day.

Bless T’s heart. He did everything to make up for it – from coming into my room with treats throughout the day, to tidying up his toys in the living room, to poking his head in to say, “Love you.”

But I needed more time.

T whined to the hubby and the hubby explained to T that while he is able to get over things quickly, others often need more time.

Michael Harris, an FASD advocate with lived experience, wrote an excellent post about the tired that often comes with caregiving – especially during harder moments when your mind is processing the whirlwind of frustration, anger, guilt, sadness, anxiety, tiredness and so on.

Grace with others and with yourself is important.

Easter Monday was a calm transition from an otherwise relaxing weekend back to our routines.

T helped with my meal prep and grocery run, and did reading with me. Then in the evening, he got ready for bed in record time and with no fuss.

I took bedtime to acknowledge the disregulation – his and mine – earlier that weekend.

I told T that life with him feels like a rollercoaster at times, but so long as he’s sitting next to me, we can enjoy the fun highs and get through the chaos and drops together.

I gave him a hug and kiss then we went to bed.

Last week, we had a sunny afternoon and so T and I played for a bit in the park after daycare pickup before heading home. I love these moments of calm and exploration with him.

Choose Your Own Adventure

We spent March Break in Mexico, explored an adventure park then celebrated my 45th birthday.

For the fourth year, we stayed at the same resort in Cancun. I prefer to try new places, but T loves it there.

In February, the resort made national news for an outbreak that made many travellers sick. Coupled with escalating gang violence, it was an antsy month leading up to our getaway.

We chose informed optimism over worry. The violence was 20 hours away. Norovirus could happen anywhere; and it might’ve been what I needed to lose my last 10 pound goal.

So with barf bags, adult diapers, probiotics and electrolytes packed – in case we got sick – we headed for 8 days of fun in the sun.

We were blessed with a wonderful time together.

We slept in, swam in the lazy river and pool, went down water slides and ate ice cream. T visited the trampoline park and I got alone time at the gym.

T remembered the three feral cats who lived on the resort and spent time with them every day – naming them Oreo, Cookie, Brownie.

T took tuna from the buffet to feed the cats.

The hubby and I enjoyed dinners by ourselves and were able to leave T in the room with his tablet; he ate beforehand.

We also did a full-day excursion at XPlor Adventure Park in Playa Del Carmen.

I wanted to visit Chichen Itza, one of the 7 Wonders of the World, but I knew T would not enjoy it.

I had also booked us for T’s first scuba dive, but it was cancelled the morning of, because of high winds. So we went to XPlor instead.

T had a great time!

The park had many activities and you choose your own adventure.

T tried and braved his first zipline: 5 with me and the last one on his own – into a waterfall!

Ziplined through a waterfall and into a cave.

We then explored an underground river by foot and by raft.

After a delicious Mexican lunch, we drove around on an ATV through woods and caves.

I will remember this trip as the one where I saw many signs of maturity in T.

He looked after his own luggage and himself. Sure, he had outbursts and disregulated moments, but we generally had an amazing time together.

These are wins that seem small to others – but moments of pride and gratitude for us.

On our last morning, while we waited for the airport bus, we took a final view of the resort.

As we stepped off the platform, a younger boy on a motorized wheelchair made his way up the ramp.

T watched him to make sure he was ok.

“I like to keep an eye out for other kids with special needs,” he said in his earnest matter-of-fact way.

I smiled and told him he has a good heart.

Two days after we returned home, we celebrated my 45th birthday.

It was a Monday and my first day back to work. I was assigned an urgent deadline right off the bat, so I was feeling a bit harried that evening.

But I still enjoyed the hubby’s homemade cake – which had an amusing T moment (see below).

During bedtime, my thoughts were on my work. But I took the moment of silence before sleep to give thanks for the time I enjoyed with my family, for another year of life, and for the privilege and blessing to choose my own adventure.

To choose light over darkness, love over hate, hope over fear, laughter over worry, trying over fear of failure, gratitude over regret.

To choose things that nourish my mind, body and soul – especially family and loved ones.

To choose to fully embrace life with T, knowing it’s not always smooth sailing. But the journey is filled with love, laughter, joy and adventure.

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A Dream for Spring

We’ve had a busy few weeks that culminated in a School Services Team (SST) meeting the past week.

The hubby and I both feel that T’s main teachers – he has two, who do half day each – don’t understand how to work with him.

It doesn’t help that he lost his CYW support in late September, after a strong start, nor do we have the most positive relationship with the new principal.

Kids pick up on energy and it’s no wonder T has had challenging moments, including disruptive behavior, the past few weeks.

In the fall, we provided consent for the school board to conduct a psychological assessment, because we felt the outcome could provide an additional tool to advocate for supports when T moves to middle school this fall.

The board psychologist was a pleasure to work with and she presented her findings at the SST meeting: T meets the criteria for a learning disability.

In case you’re wondering, here’s a primer on the difference between a learning disability and intellectual disability.

The crucial part of the assessment is that T has many wonderful strengths and the data supports him to continue in a regular classroom with supports.

This was wonderful, because the principal keeps pushing us to place T in an intensive support program, which we feel does not align with his learning profile, strengths and potential.

T’s tutor also agrees with the assessment.

I feel more strongly now that some administrators try to put kids into intensive programs, because they don’t know how to support kids like T, and try to take the path of least resistance.

And that does not sit well with me.

Our next step is to attend an Identification and Placement Review Committee meeting, where board staff will review T’s profile, hear from us then make a recommendation for T next year.

The psych assessment will be crucial data to support our advocacy for T at the IPRC.

So I feel positive for the Spring ahead.

After a long winter, it’s a beautiful weekend in our city. The sun is out and with double digit temperature, the giant piles of snow are melting.

I’ve made peace with the fact that T’s teachers are not going to jive with him.

So we’re focusing our energy to help T finish his year on a positive note and to prepare him for the big transition this fall.

There are many strengths and progress to build on.

T connects with his tutor, who supports and challenges him. He now reads grade-level novels.

T’s making awesome progress with swimming and having fun with soccer.

His disregulated moments are still brutal but I also see glimmers of emotional resilience and maturity.

T had his fourth monthly session with his psychologist on Friday. It was the first session that I felt him coming out of his shell. I heard loud table banging and thought it was going off the rails, but they were roleplaying and having fun.

Progress, not perfection, is all I dream of, hope for and strive for with T.

It is therapeutic hearing the stream of melted snow flow into the sewer.

8 Running Horses

At the start of this Chinese New Year, I thought about family traditions passed down.

As a kid, Pa would get up early on CNY to make fried rice cakes and I’d wake up to its tantalizing aroma. It was a simple sweet treat deep with sentiment and intention.

I thought about family dinners – a spread of meats, veggies, soup and noodles, enjoyed together.

I do my best to share these traditions with T. T never met Pa. They would’ve amused each other.

When Ma was decluttering before she moved back to the Philippines, I kept a few items: priceless photo albums, a few trinkets that reminded me of my parents, and a painting of the 8 horses.

In traditional Chinese art, the 8 galloping horses or “Ba Jun Tu,” symbolizes courage, strength and perseverance.

The imagery also represents life’s eight aspirations: happiness, health, education, progress, career, marriage, children and recognition.

This was a gift from my Aunt – Ma’s sister – and hung in the living room of my childhood home then the living room in Ma’s apartment when she downsized after Pa’s death.

For over 30 years, it hung quietly as the backdrop for countless get togethers – many of them long forgotten in my subconscious.

Today, it hangs over our dining room table, along with the hubby’s replica of the Bluenose, a Canadian ship featured on our 10 cent coin – a blending of our two families and cultures.

Life moves on and we create new traditions, while honoring what came before us and moulded us into who we are today, as we shape what T can become one day.

T sitting in his stroller in front of the Bluenose II, in Lunenberg, Halifax. He was only 2! 🥰

February 15 is the day T’s adoption was finalized in court.

So every year, we celebrate our Forever Family anniversary in between Valentine’s and Family Day.

This year, we celebrated each day consecutively over the long weekend. Then Chinese New Year immediately after.

T woke up on Valentine’s to chocolates, hearts and Lego, a nice start to a chill weekend.

The hubby had to work over the long weekend, so I kept T busy. We redeemed coupons to enjoy an hour of free jumping at the trampoline park on Saturday, watched a movie on Sunday and enjoyed a quiet Monday at home.

On Chinese New Year, which happens to be the year of the fire horse, I gave T a red envelope, a tradition of wishing good luck, health and prosperity.

T has started the Wimpy Kid novels and loves them. I’m proud of how much he’s growing in his reading skills.

Life as a House

Our T turned 11 earlier this month. How do we have an 11 year old?!

At this age, it’s all about Lego – an activity that he and the hubby enjoy doing by themselves and with each other.

T has long displayed an aptitude for STEM activities, building and figuring things out with marble runs, like Gravitrax, or using things around the house – chairs, pillows, cushions, boxes – to build forts.

His tutor, Ms Karen, says he’s very creative and when he’s interested, he demonstrates focus and perseverance.

I think he has a wonderful and creative imagination.

The past few weeks, he’s gotten up early on his own or shown no protest when we wake him up, so he could work on Lego.

He received Lego house sets for Christmas and his birthday from us and his grandparents.

I like that Lego teaches him to work through frustrations – although there are random moments when a loud scream or table bang would rattle the silence, because he’s stuck on a step.

In fairness to T, these Lego sets are for users 18+ – so he’s doing a great job following the thick manual of instructions on his own.

Life is like a house – built one brick at a time, on a blank foundation.

There are perceived norms we try to follow and moments when we get stuck in frustration.

The biggest lesson in the last 10 years as a family is to focus on progress not perfection.

I love seeing T’s progress with his Lego projects.

A house is a container. It’s the moments inside that animates life with memories: of birthdays, camping trips and roasting hotdogs by the fire, of roadtrips, and so much more.

We’re on the cusp of T’s teen years and I dread what I anticipate will be challenging times.

As T’s aptitude with Lego reminds us, focus on the strengths and build up from them. They’ll provide the foundational support for everything else.

T’s 11th birthday was lowkey.

He was disappointed we didn’t do a party, like we did the year before.

We explained parties are expensive and that his 10th birthday was a milestone year. We’ll do another one when he turns 13 and 16.

The night before his birthday, he sulked and vented about not getting a party nor decorations in the house, as in previous years.

I gave him a reassuring hug before he went to bed and said things will be ok in the morning.

He woke up to balloons taped along the stairway, outside his room, leading up to our foyer closet – with a happy birthday banner and our traditional large shiny number balloons – an 11 this year.

We had pizza and opened presents in the evening and enjoyed a small “rehearsal” cake, just the three of us, as it was a school night.

Later that weekend, we had lunch with family and enjoyed his “real” cake; a Slither-themed chocolate cake with buttercream icing.

He loved it.

The Doppelgänger

T’s beloved Moo Moo has been with him over half his life.

He regulates T and has accompanied us on countless roadtrips and on vacations across Canada and the Caribbean.

Years ago, the hubby and I bought an exact replica, in the event we ever lost Moo Moo. He hides in my closet, still wrapped in its original plastic.

I came across him, while we spent this snowstorm Sunday cleaning our messy home.

One cow is worn down, tattered and dirty; the other is shiny new.

One has years of lasting memories that stir joy and smiles; the other is void of context and meaning.

T’s favourite gang of stuffies travel together. Ladybug has been with him since he was a baby.

It’s like life as a FASD caregiver.

On many days, I feel worn and tattered; but boy, are there a lifetime of memories that make me smile, laugh and immensely grateful.

Treasured moments, hard-earned successes and humbling lessons that can never be replicated.

Life is experienced – and if we’re lucky, it’s experienced together with loved ones.

Thanks for this reminder, Moo Moo. 💕🐮

Playing with a younger boy in the plane seat in front.

The Ring Bearer

A wedding and a death. One weekend. A young couple unite. A family bids farewell to its matriarch.

Ma would’ve celebrated her 85th birthday this week.

As T and I visited the cemetery last weekend, I thought about my unexpected journey two years ago, across the world from Toronto to Manila.

An emergency holiday visit to cheer up a mother grieving the loss of a daughter became 10 days of celebration, worry, and an unexpected goodbye.

Ma was in the hospital when I arrived, a few days after Christmas. She had a fall at my uncle’s home and was refusing to eat.

The surmountable situation took a turn when she got pneumonia and COVID and was moved to ICU.

In the background were New Years celebrations and the lead up to my cousin’s wedding.

40 years earlier, I was the ring bearer for my uncle’s wedding.

I was 3 and chickened out because I was scared. 😂 Thankfully, my cousin saw the task through.

40 years later, I was back at the same beautiful church; an unexpected guest at my cousin’s wedding, the youngest son of the same uncle, Ma’s youngest brother.

It was a joyful reunion of Ma’s six younger brothers and sister and their families – with gatherings leading up to the big day.

Delicious Filipino food at a family dinner the night before the wedding.

Now that Pa and Ma are gone, I understand and appreciate the weight that caregivers bear for their children – often unspoken pressures and worry.

As we get older, there is a transition where roles reverse and we become the bearers for our parents.

That weekend, I bore the biggest decision I’ve had to make on Ma’s behalf.

After the wedding ceremony, Ma’s family hung out at a Starbucks before the dinner reception.

Ma’s siblings – uncles and aunts whom I looked up to all my life – and I had a family meeting. The eldest brother let me know that they support whatever decision I make: to take Ma off life support measures.

I felt in my heart that Ma was hanging on, because she didn’t want to ruin the wedding.

I also reminded them that Ma always said her biggest fear was to be suffering and intubated.

I had a corn beef pandesal, a local offering at Philippines Starbucks.

The dinner reception was lovely. Time spent with family over delicious food, gorgeous decor, and touching speeches.

It felt surreal to be away from my own family, the longest I’ve been away from T – and to celebrate this beautiful day, knowing that in a few hours, I’d be at the hospital making a hard decision.

The following morning, after verifying with the doctor that they were only prolonging the inevitable, I returned to ICU with my uncles.

Everyone had a moment to say goodbye to Ma, who was unconscious.

Another family had gathered in the space next to Ma’s, mourning their loved one, who had passed away a few minutes earlier.

I signed legal documents then took a moment to say my last goodbye to Ma.

Life is a circle and it was my turn to bear the weight for Ma; to represent her at my cousin’s wedding and to help her go in peace.

An illustration of a photo of Ma and T, which T placed in his room, on his bookshelf next to his clock.

At my cousin’s wedding, there was a little ring bearer who was carried down the aisle, screaming and crying, by his parent.

I smiled at him. “You’re doing great,” I said silently in my mind.

Being in this world without your parents is a strange feeling – the buck truly stops with you now; it feels both freeing and lonely.

I bear the hard weight now for T until he is old enough, one day hopefully, to carry the load.

It’s a reminder to enjoy his childhood and the gift of this short life and our loved ones that we’ve been so blessed to have.

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?!

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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:

No smartphones before high school.
No social media before 16.
Phone free schools.
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.

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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.