Being able to receive and apply feedback, as hard as it can be to hear sometimes, is key to growth.
In February, halfway past the Grade 3 school year, the hubby and I had our teacher conference with T’s teacher, CYW and the school’s special education coordinator.
We discussed T’s areas for improvement: reading, writing and social skills.
He’s reading at a grade 2 level. He does ok with decoding but needs to work on comprehension, reading stamina and to move away from picture books to chapter books.
I was a bit bummed, because we work hard on reading and I thought he was doing ok. But I’m also not surprised they’ve noticed his poor working memory, which supports reading comprehension, as it’s common for individuals with FASD.
A special needs parent needs to collaborate with teachers and service providers, and their child, to maximize their child’s success.
That includes keeping it real and being open to feedback that may seem critical, because often the intentions are to help.
We focus on the big picture, because it can be so worth it.
Like with T’s first term report card, received prior to the meeting. Bs and B+s – based on his Individualized Education Plan – and we’re proud of his progress!
An A on his recent math test! 🥰
During the meeting, his teacher said they will send home beginner chapter books to practice with T.
Reading practice with T can feel quite painful, because it is not a preferred activity.
We persevere because we know it’s a foundational skill and we believe in him.
During our recent March Break trip, we packed a beginner chapter book – “Tornado” by Betsy Byars – and read one chapter a day, using play and pool time as incentives.
I paused on every page to ask comprehension questions.
Some days were hard to get T to focus, but he finished the book on our vacation and read and answered questions well!
T’s first-ever completed chapter book! An appropriate title for our hyperactive kid!
We shared the happy news with his teacher and CYW when he got home.
We’re now working through his second chapter book, slowly building a routine to read one chapter during bedtime.
Like with everything else in life with T, it’s a work in progress.
T does steadily well on weekly spelling tests and once got a perfect score. I try to focus on these positives when we stumble.
On Easter Monday, T and I visited Pa, Ma and my sister at the cemetery and T read the latest chapter of his book to his Ama, while we both sat on the ground in front of her memorial site.
Just my luck, it was the longest fucking chapter in the book! He got unfocused at some points, but he finished and I told him Ama was proud.
His audience understandably didn’t offer much feedback. 🤣 But in life, you also do things because the feedback of your inner voice tells you it’s the right thing to do.
An overzealous adult crossed the line with our neurodiverse son and awoke the Papa Bear in me.
While waiting at the airport for our early morning flight home after our March Break trip a few weeks ago, T was disregulated.
He didn’t get a lot of sleep and he was short tempered, hyperactive and mouthy.
During these situations, the hubby and I try our best to ignore the behaviour, while fully aware all eyes and ears are on us.
We gave T fair warning that if he didn’t stop with the colourful language, which he would say out of frustration with the game he was playing, we would take his phone away.
And so we did. He got mad and started swearing loudly and smacked the hubby.
A woman sitting in front of us then yelled loudly at him, “Hey kid, this is not a playground!”
The hubby got up with T and they walked away to try to deescalate somewhere less crowded and noisy. As the hubby walked away, he told the woman, “Your comments are not helpful.”
The woman then looked at me in disbelief but instead of backing her, I said to her, “He has a disability and he is escalated right now.”
Then she snapped back, “I’ve fostered kids before so I know all about kids like this.”
I didn’t back down, because she should’ve known better then.
“His brain is on fire,” I said. “He is in fight or flight mode. I know these situations are hard for everyone – believe me, this is hardest for him. Comments like yours only add fuel to the fire.”
She saw I was not backing down, so she swiftly ended the conversation grumpily, “Well, you’re very tolerant.”
She then turned her body away from me and towards her travel companion next to her. She typed messages on her phone that she silently showed to her companion.
So I squared my shoulders and body towards her for the duration of the wait for the flight. Two can play the let’s-make-things-awkward game.
I was livid, because she crossed a line.
People can think what they want about T, judge silently or even speak to the hubby and I and tell us he’s being a brat or we’re being bad parents.
But to directly yell at him, when she was not part of the situation, was inappropriate.
I would never yell at someone else’s child when that child was not doing anything to me.
Reflecting on this situation a few weeks later reinforced to me that being a special needs parent is about taking a different path, one that is often counter to the path I took growing up.
As T grows up, he will face misunderstandings, intolerance and I know it will get harder, because people only see outwardly behaviour without understanding the underlying reasons.
It makes me sad and angry. But I am doing my best to redirect these feelings into something productive – awareness raising, advocacy and most importantly, standing up for my child.
The plane ride home had a few bumpy moments with T, but I didn’t care.
During a particular rough patch of turbulence, the pilot reminded us to fasten our seatbelts.
And that’s what life with T, a child with FASD, is about sometimes.
Fastening your seatbelt and landing on solid ground eventually – small patches of turbulence in a journey filled with wonder.
One last photo, at sunrise, on our last morning at the resort shortly before heading to the airport.
After a cloudy few months, we’re spending March Break at a place of happiness.
We booked this family getaway last October, before I knew one of my closest friends would lose her brave battle with cancer in November. Never would I have guessed Ma would pass away a few weeks later.
For better or worse, life goes on. I feel the urgency, the fleetingness, more so than ever.
We returned to the same resort in Cancun, Mexico, that we stayed at last year; it’s a beautiful resort with fantastic amenities for kids.
In the days leading up to departure, T excitedly counted down the days then hours.
For the most part, we are having a good time. The warm weather, sun, pools, beach and restaurants have provided rest and comfort.
The challenging parts of the trip has been T’s behaviour.
Maybe it’s the change in routine, but he was disregulated the first few days – his foul behaviour at the restaurants were embarrassing.
But such is life with a child with FASD – you take the good with the hard.
You remind yourself it’s the FASD you detest, not the child, and every day is a chance for a redo.
We’re now halfway into our trip and the last two days have been great.
With T, there’s nothing that ice cream, waterslides or cotton candy can’t mend.
I’ve carved time for myself – to let the weight of the past few weeks go.
That means eating well (plates full of fresh papaya), sleeping lots, and hitting the gym with Ferry Corsten’s uplifting trance music on rotation.
I discovered a recent work of his that I hadn’t heard before, Surga, which has his trademark joyful melody all over the hypnotic production.
Surga is an Indonesian word for heaven or paradise; a place or state of great happiness.
I saw a deeper message in this seemingly random musical discovery.
As our plane descended towards Mexico a few days earlier, there was a moment when we sank through the clouds.
“Are we in heaven?” T asked.
“No, why do you ask?”
“Because we’re in the clouds,” he said. A moment later, he said, “I think this is where Ama is.”
On Saturday, surrounded by family and friends, near and far, we said goodbye to Ma.
It was celebration and catharsis.
I am thankful for the last few weeks to reflect and to remember what an inspiring life Ma lived, full of love and accomplishments.
Loved ones from afar, including Philippines and Guam, joined the service virtually.
I compiled a slideshow that highlighted Ma’s important relationships, as a daughter, wife, mother, grandmother, great grandmother, beloved family and friend, and respected colleague.
It felt wonderful to find photos of memories long forgotten, including photos of Ma with former Philippines President Corazon Aquino, whom she once followed on her US press tour.
Press corps with Corazon Aquino at the Presidential Palace.
I was touched by the support of those who joined, including my dear friends, and faces I have not seen in a long time, including Ma’s teacher colleagues from Manila, one of whom was my kindergarten teacher!
I’m seated in front of my kindergarten teacher in this kindergarten graduation photo. She attended Ma’s service with her son, one of Ma’s students. Ma, our principal, is seated in the middle.
T was calm and regulated during the service and interment. He always show up for us when it matters most.
We spoke with T in the days leading up to the service about what to expect and we arrived to the funeral home early so T could have alone time with his Ama before guests arrived.
Unlike my sister’s funeral a year ago, there was no body. It was an urn and so it was a new experience for T that we briefed him about beforehand.
T had a few cries, including during the moments right before the interment.
At T’s request, we let him lower Ma’s urn into her memorial bench, where she will be buried with Pa.
We wanted to include Ma’s glasses with her.
T, in his very creative and thoughtful way, placed her glasses right on her urn.
I can only imagine Ma chuckling at what her grandson had done in her honour.
As the pastor who delivered Ma’s service said, death is not defeat. It is merely a chapter in our journey. I wholeheartedly believe we will all see each other one day in another life.
For now, I intend to honour Ma’s life by living my own to the fullest and to help our T do the same.
During school lunch a few weeks ago, T proclaimed to his class he was refunding his parents.
His CYW recounted to us with amusement, via text message, that T ranted out loud that he had told Daddy (the hubby) many times that he didn’t want meatballs for lunch and still got them.
Due to this unforgivable offense, T said he was going to Walmart to put his parents back on the shelf and get new parents.
After his soliloquy, the class laughed out loud.
His CYW, who’s working with T for the second consecutive year, is a godsend.
She sees the potential in him and his many strengths.
Like us, she thinks T has a great sense of humour – and we look forward to her text messages updating us on whether lunch was 👍 or 👎.
She works as T’s external brain – now on a part time basis, rather than full time, as there are other kids with needs in his school too.
We could tell how much she cares for T and we are so grateful for the difference she makes.
Most recently, the class had to complete a project about Canada – to create a display then present it to the class.
His CYW was determined to help T do well and gathered dollar store supplies over the weekend.
She then coached him on his presentation.
On the big day, she texted us enthusiastic updates and photos, letting us know T did excellent.
At a teacher-parent conference last week, T’s teacher and CYW gave us great feedback on how T is doing – his strengths and areas for improvement.
T’s CYW said she considers herself very lucky to work with T.
I replied that we are the lucky ones to have her.
The day after was another PA Day and T attended another wonderful meetup event hosted by Surrey Place for kids with FASD and their caregivers.
Instead of horses and dogs, the activity was a cooking class! The hubby took T this time and it looks like they had fun!
Raising a kid with special needs is hard. What makes a big difference are the community supports – and we’re so lucky to have the ones in our lives.
As social creatures, we yearn for connection and we thrive when we have psychological safety.
This was the key takeaway from a virtual talk by FASD expert Nate Sheets I attended during a recent caregivers group get-together.
I’ve followed Nate’s work for a while but it was my first time attending a live talk and I’m thankful to Surrey Place for organizing it.
Kids with FASD struggle with emotional regulation and quickly escalate into fight or flight mode – their brain set on fire.
In these moments, traditional parenting teaches us to discipline. But it’s the equivalent of throwing gasoline into fire and views the behaviour as disobedience rather than an overwhelmed child struggling to cope.
The point Nate made that resonated with me is that when we create psychological safety for our kids, it minimizes moments when they get disregulated. To do this, we must find moments each day for connection.
When it’s spelled out like that, it’s suddenly bloody obvious, isn’t it? After all, success in life, personal or professional, is about relationships.
One of several informative talks by Nate Sheets that you can find on YouTube.
To our family, we find simple ways to connect:
Making time for play, like Everest time; even a few minutes before T gets ready for school.
Hobbies like swim lessons with the hubby and leisure swims at the community pool with me.
Treasured routines like hugs before T walks out the door or standing on the steps and waving goodbye as T drives off with one of us.
It’s about trying to make challenging tasks fun.
Homework is often triggering for T but he’s come a long way with sitting down each night to complete his work.
Lately, I’ve taken to roleplaying as his favourite stuffed toy Moo Moo to practice for his end-of-week spelling test and to do his other work.
He now insists Moo Moo does homework with him and not me – often pausing to give the cow hugs and kisses before carrying on.
It’s so absurd and cute – but hey, it works! 🤣
T has come a long way with school work. We are so proud of him. 🐮
Connection is more important now than ever as T grieves a significant loss: his Ama.
He sometimes bursts into tears at night about how much he misses his Ama.
During these moments, we sit and silently comfort him as he lets out his tears and thoughts.
We once worried T would fall behind in reading. Look at his print recognition skills now! 😂
Walks and hikes are other simple but effective ways to build connection. T thrives in the outdoors and it helps regulate him.
During a walk this Saturday morning with the hubby, they explored graffiti under bridge tunnels and encountered a furry pal.
T loves and is so caring with animals.
Kids with FASD exhibit challenging behaviours. But they are also often very empathetic and caring.
We see this every day in T, who tries hard to find connection with other kids.
My heart aches when I see or hear about his struggle with friendships – and it soars when I see him succeed.
Setbacks build character and resilience and we will never give up in helping T build connections.
Today is Valentine’s and T has homemade cards for his classmates, teacher and CYW.
He worked hard over three nights on them, spending probably more time than needed on each card, thoughtfully drawing a nice photo in each.
We even took him out of daycare early yesterday so he could have more time to finish them. 🤣
Moo Moo was on hand for moral support.
T put a lot of time (3 evenings!), thought and heart into his Valentine’s cards for his class.
We remind our little guy that he is stronger and braver than the monsters in his head.
During a recent Sunday morning, around 1:30, I was woken up by the hubby having a fit.
T had turned on all the lights in the house, downstairs included, and was up playing with his toys – because he was too scared to sleep.
The next morning, around 1:30 Monday, it was my turn to be flustered, because he was up again; this time, on a school night.
While T has always feared the dark, this was the first time it affected him to the point of getting up, turning on lights and staying up.
Sleep is especially important for those whose brains are on overdrive. We’ve been lucky T is usually a good sleeper, so this was concerning.
“The Darkest Dark” by Canadian astronaut Chris Hadfield is a treasured picture book we often read with T, a great story about overcoming fears.
Fear of the dark is normal. Heck, I was 16 when I slept with lights on after watching The Exorcist.
But as Freddy Krueger in Nightmare on Elm Street taught us, the monsters in our mind feed on our fear. Facing our fear overcomes these monsters.
The monsters that adults fear are different; real monsters that cause harm to others or situations that render us helpless, be they health, relationship or finance related.
As a FASD parent, I’ve found myself in dark places.
The fears, real or perceived, can feel paralyzing. Fears that T would never thrive, be bullied or struggle with friendships, become a delinquent, or that FASD would destroy my family.
These fears are fed by reading and hearing about other caregivers experiences and encountering challenges myself.
Monsters often seem smaller when you face them – by learning more about FASD, building skills, finding supports, making time for self care and connection, adjusting expectations, and finding gratitude in our many wins.
During a recent counseling session, I received great advice.
Special needs parents often find ourselves like deers caught in the headlights. We focus on that blinding light that we forget to look around at all the good stuff around us.
Going for night walks during warmer seasons is a favourite pastime for T and I.
As parents, we know fear of the dark is normal.
It can feel silly to us but for our young ones, their fears are very real.
So we try to validate T’s feelings and let him process them while helping him build coping skills.
It includes letting him talk and to understand what’s contributing to his fear. Is it a bad dream, a scary video, an incident at school, a symptom of grieving from recent events?
We installed night lights in his room and hallway, recognizing that getting him comfortable with the dark will require a transition.
Thankfully, the evening wake ups were shortlived, for now, and night lights are helping. It’s our goal to wean him off them.
I also gave T a second pillow and told him to hug it when he gets scared at night.
Then he asked, “Is this why you sleep with two pillows, Papa?”
Live and love as if it’s your first and last day on Earth.
Our caring, curious, funny and not-so-little guy turned 9 this weekend. How is that possible?!
The past year brought adventures and hard losses and through it all, he steps forward with his fun-seeking, resilient and endlessly energetic spirit.
Our consecutive hard losses have profoundly shifted my mindset of how I want to step forward with life.
Life is a blessing and the gift to enjoy it with loved ones is something I will never take for granted.
We kept T’s birthday celebration low key, as we did not have time to organize a party, because of the events of the past weeks.
We stayed home and got the traditional golden balloon ready for when he woke up.
This year’s theme is Skidibi Toilet, an obnoxious web cartoon he’s currently obsessed with, so the colour scheme is red and black, traditionally associated with celebration and mourning.
An appropriate theme, I might add!
T’s Uncle J dropped by in the morning for a surprise visit and they played together. As my cousin left, I hugged him and jokingly pleaded to not leave us alone with our endlessly hyperactive child.
T then went to swim lessons with the hubby then we just relaxed at home in the afternoon.
We took T for dinner and play at Chucky Cheese then enjoyed a chocolate cake with buttercream icing at home well past his bedtime.
T is great at basketball.
The simple pleasures of life are deeply meaningful when spent with those we love.
Wishing our sweet T a year ahead of continued happiness, good health, growth and adventure.
Sometimes, a picture sums up life’s depth of emotions better than words ever could.
Yesterday, we had lunch with family to celebrate Ma and my aunt’s birthdays. Ma’s absence was noticeable.
Afterwards, my uncle, recently returned from the Philippines, gave me Ma’s urn.
It was a strange feeling holding it in my hands. The logical part of my brain knew what it was; the emotional side shielded me from the reality.
I placed the urn in our home next to a photo of Pa – where it’ll remain until Ma’s interment, when she will be laid to rest with Pa and next to my sister.
I then unpacked framed photos my uncle brought back that belonged to Ma.
The first photo I unpacked was a lovely illustration of Ma and T, pictured at the top.
It was commissioned by my cousin’s thoughtful wife, from a photo I provided; my favourite photo of Ma and T, taken at a restaurant last June, one of the last times T spent with her.
I love this photo because it so deeply and succinctly captures the loving relationship between Ma and T.
T’s mischievous face pressed right up to his Ama’s – his signature lack of personal space approach to tease someone, his way of saying I like you.
I then remembered all the times when T would tease Ama, following her around and smacking her butt and burping in her face – or walking around with her cane, pretending to be slow and old.
Ma would eventually get annoyed and yell at him to stop but be unable to keep a straight face and hold in her laughter.
I love this photo, because of Ma’s warm smile that radiates genuine unfiltered unconditional love.
It’s astonishing, and a bit offensive to me, the sheer hell T got away with. Ma would’ve beaten me to death for half the things he got away with.
But that’s what makes the bond between grandparents and grandchildren special.
She never fully got what FASD is and it didn’t matter that she didn’t. All she saw was a kid that she loved and she loved him as such.
I had a good cry when this photo caught me by surprise.
Then I showed it to the hubby and T.
I am thankful Ma and T got to enjoy each other for seven years. While we always wish for more time, I am grateful for the time they had together.
We let T decide where to put the photo and he asked for it to be put up in our living room, the place in our home where he spends the majority of his waking hours in – above his favourite toys.
We prepped T for his first concert by looking at photos of the venue and show and speaking about what to expect before, during and after the show.
M starts her shows way past T’s 8:30 bedtime. So we took him out of after school care so he could rest and have a soothing bath beforehand.
We also took him out of school the day after the show (Friday), coordinating with his teacher to complete all his homework and end-of-week spelling test (13/15 🙌) by Thursday.
With T prepped, off we went to the show!
We drove and parked near a subway station five stops from the venue – to save on parking and minimize the transit commute after the show, fully anticipating T would be overstimulated after.
Walking from the subway to Scotiabank Arena.
We set the bar very high for T’s first concert – as M’s shows are produced to the highest quality and with powerful heartfelt messages.
We arrived at Scotiabank Arena close to 9 pm and enjoyed the preshow DJ set and popcorn.
The hubby and I were annoyed to realize we left T’s noise-cancelling headphones in the car. Oh well!
The show started at 10:15 and she opened with “Nothing Really Matters,” one of her less widely-known singles from the late 90s about her reflections on being a first-time mother.
She’s never performed it on tour so this was such a treat for diehard fans, 25 years after its release.
A lovely video from the Toronto show posted by another fan. I kept my phone mostly in my pocket!
The show was a joyous poignant ride through the life of an artist I’ve long admired – celebrating her ups, downs, successes, setbacks and constant reinventions in an unparalleled four-decade-and-counting career.
“Nothing takes the past away like the future
Nothing makes the darkness go like the light.”
– “Nothing Really Matters”
Having attended all-but-one of her tours since 2004, this show felt extra special because it was an autobiographical celebration of her life and included four of her six children; her eldest two kids were featured on previous tours.
David Banda accompanied her on guitar in two numbers, including the crowd pleasing 80s hit “La Isla Bonita” (below).
Mercy James, now 18 (how is this possible?!), played the piano during “Bad Girl” (below), the first time M has performed this early 90s ballad on tour.
M has long used her art as a form of expression, protest, advocacy and celebration.
The most moving part of the show was when she performed her 80s ballad “Live to Tell,” atop a platform that floated across the arena, while giant photographs of those who’ve passed away from AIDS were projected on massive screens.
It was a beautiful tribute and provided a reminder of her AIDS and LGBTQ advocacy in the 80s, a time when it was considered career suicide to do so.
Her music has inspired me in different ways in my life; today, in my journey to advocate for T and the FASD community.
“Live to Tell” was incredibly powerful. The massive photos were very moving to see in person.
Music provides comfort during hard times.
Another moving part of the show was when M and David Banda performed “Mother and Father,” a deep cut from her 2003 album, “American Life.”
A recurring theme in M’s work is about how the death of her mother, also named Madonna, when she was 6 profoundly shaped her life.
Her performance, featuring large photographs of her mother and David’s birth mother, paid tribute to both their late mothers.
Watching this performance, less than a week after my Ma passed away, was quite emotional.
“Faster than a speeding light she’s flying
Trying to remember where it all began.”
– “Ray of Light”
Music also underscores the joyous moments in our lives and as M sings in her #1 hit, “Music,” it also makes the people come together.
It was amazing for us to immerse T in an arena packed with 13,000+ other fans – mostly adults, I saw less than a handful of kids – in a celebration of life, art and community.
As the awesome rave-themed and laser-filled performance of “Ray of Light” (below) reminded us, M is, at her core, Queen of the dancefloor.
T danced along joyously to this performance and it is an image I will tattoo in my heart forever.
So you must be wondering how T did.
He had fun. He’s a fan of her music and listens to it during our drives.
He was also overstimulated. When the show started, he looked at a stopwatch app on the phone (see below) for over half the show, peeking his head up from time to time to see what was going on.
I think it was his way of regulating himself.
He let us know after he liked the show! 💕👍
The show wrapped up at 12:30 am.
I was super tired – and still jet lagged – but I felt thankful for the experience.
Little did I know last August when the show was rescheduled, due to M’s near fatal illness, that it would take place at a time when I really needed a pick-me-up.
More than that, I felt grateful to have experienced this with T and to see him experience not just his first concert, but Madonna, through his eyes.
As we were leaving the arena, a random woman went up to him and said, “You don’t know how lucky you are!”
As we expected, T was beyond overtired, overstimulated and disregulated during the subway ride back uptown.
As we waited on the crowded subway platform, he repeatedly ran up the stairs and jumped down the steps.
Then he started rolling and crawling around the platform – then repeating this on the train.
Once I got over my initial self-conscious annoyance, I thought with amusement on our drive home about how Madonna once rolled and crawled around on the stage floor during her first televised performance at the inaugural MTV Video Awards in 1984.
T learned about his Ama’s death the week prior, in the middle of the school week. We gave his teacher and CYW a heads up before telling him.
The next day, his CYW said T asked to step out of the class to talk. She said he talked for over half an hour while she listened.
He said that everyone he cares about is dying and that he is scared he will lose someone every year.
That night, he had a big cry at home.
I was also having a hard week. Ma’s death hit me hard. The jet lag did not help. I stayed in bed for most of the week.
I was grateful for friends and colleagues’ support, including gifting Uber Eats gift cards that we put to good use.
A week later, we’re better. T still has moments when he cries and we give him space to talk.
I am thankful T externalizes his feelings – one blessing I’ll attribute to FASD and the lack of impulse control and regulation – because internalizing grief is not ideal.
Emotional wellbeing is as important to nurture as academic and physical wellbeing.
We want to normalize that it’s ok to ask for a break; it’s ok to take a Personal Affection Day.
T did keep himself busy on the PA Day, playing on his tablet and with his toys.
I love seeing T’s imagination come to life.
Friday was also Ma’s birthday. So in a way, it was nice T was close to us all day. That evening, we went to Dragon Legend buffet to celebrate Ma.
On Sunday today, I felt like my normal self for the first time since Ma’s passing, and took my own Personal Affection Day by doing things I enjoy.
I spent part of the morning meal prepping for the week, my first time cooking in a month.
I made Jamaican beef brisket stew for dinner and it felt soothing slow cooking this aromatic meal.
I did weekend learning with T. It felt nice to have the motivation to do so again; I created a Skidibi Toilet-themed math worksheet to T’s delight.
T zipped through reading and math practice and I thanked him for being focused then announced the rest of the day was for play!
We went for a long walk before lunch then swimming at the community pool in the afternoon.
It was nice to resume our Papa and T Sunday swim ritual after a month-long pause.
As we drove home, the golden hour sun bathed the snow-covered sidewalk and lawns in our neighbourhood.
It felt sobering and sad to realize that life moves on all around us, regardless of how hard a loss is.
But it was also a reminder of what a gift life itself is – and the best way to honor our loved ones is to live our lives to the fullest.
The beef brisket stew was the perfect way to end this day – and yes, the gooey fatty bits are the best.
After Ma was admitted to ICU, I could no longer visit her. So, with thanks to uncles, I visited Binondo, the neighbourhood my family lived in for most of my early childhood in Manila.
My family moved into and lived at a well-known Chinese school when I was 3, after Ma took the job of principal to run the school.
Yes, I spent a large chunk of my childhood living in a school and studying at that same school.
Our home was on the second floor and you can see my bedroom window above the word “Philippine” on the sign in the photo below.
Photo credit: Unknown from Google
I have many fun quirky memories living here:
Like going to take my shower and there’d be students standing in the hallway outside our door.
I had no excuse to be late for class, as classrooms were literally steps from our door.
I worked hard to prove myself, because Ma was also my principal – a strict one!
We wore uniforms. Teachers did random spot checks to see if our nails were cut. Students stood up every time a grown up entered or exited the classroom to greet them.
I had the school to myself on weekends and roleplayed as teacher in the empty classrooms.
One of my friends lived on the third floor, her mom was the Grade 6 Chinese teacher.
School started at 7:10 and morning classes were taught in English. Afternoon classes ran till 4:00 and were taught in Mandarin.
Kids as young as kindergarteners had exams. The passing grade was 75% and the first thing we did when we received report cards was to look for the color red, which meant a failing mark.
Ma said I once tutored a fellow classmate and when they did well on their exam, the parents gifted me a roasted chicken! 😆
During typhoon season, Ma organized fundraisers to support vulnerable people and families that lived in the slums.
When I first visited Manila in 2008, 19 years after moving to Canada, the hubby and I went to see Binondo.
The school had been torn down and a low rise building was being constructed in its place (see above). I was devastated as I had hoped to see the school again.
In recent years, with the influx of social media, it’s wonderful to see Binondo gain local and international recognition, thanks to influencers discovering its history and offerings for foodies – such as those highlighted in the video below.
My cousin opened a cafe in Binondo last fall and I was so happy I got to visit in person – as I’ve been drooling over their Ube (purple yam) latte from afar on Instagram. 😋
Here’s the latte with the Ube stirred. 😋
As we inched through the Manila traffic towards my old street, I couldn’t help but reminisce about my childhood in Binondo.
Then we arrived at the intersection of where the old school used to be, now in its place is a low rise building.
I walked around the building and gazed down the streets.
The convenience store from my childhood was still there and I spoke to the owner, who remembered Ma’s time as principal.
The streets that once seemed long and wide were short and narrow.
There were still street vendors selling noodle soup – and I remember how Pa would not allow me to have them nor the bola bola (fish ball) skewers sold by vendors outside the school, because he felt they were unsanitary. 😆
My childhood friend still lives on the street. She was working that day so we couldn’t meet up; but we saw each other during my prior visit.
As we drove away, I felt a grounding sadness.
This was probably my last visit, because Pa and my sister were gone – and now Ma.
I also felt overwhelming gratitude for having the opportunity to revisit this special place that will always live on in my heart and memories.
Grit, resilience and work ethic are wonderful lessons I learned from Ma.
I thought about times she demonstrated them during my recent unexpected visit to the Philippines, as she battled for her life.
At 15, she left her home in the province to move to the city in Manila to attend university – working tutoring jobs to support herself and her 7 siblings.
She grew up poor and during hard days, she’d turn on the tap to sip water to fill her hungry tummy.
Growing up in Manila, I rarely saw Ma as she worked two jobs – as a school principal during the day and a journalist for the Chinese newspaper on evenings and weekends – to meet ends meet.
When I was 8, my family immigrated to Canada and my parents gave up a life they loved so that my sister and I could get a chance at a better life.
In Canada, Ma was the sole provider.
When I was 15, I came home one day and learned she quit her job, which she hated. For two years, she kept us going through tutoring work, while she took a training program for a bank teller job.
In her 50s, she started work as a teller. It was low paying, but she kept our family afloat and saved very hard to buy a home.
In her late 60s, she retired when Pa fell ill and took good care of him until his death.
When she had her stroke in 2020, she told me at the hospital that she was a fighter and was going to survive. And she did.
Through her example, I developed my own work ethic, perseverance and determination – qualities I hope to pass down to T.
When I arrived in Manila, I knew it was my turn to help Ma fight.
She was hospitalized for a fall. Medically, it was surmountable; but she was struggling with grief for my sister’s death. She had no will to get better.
During the four days I visited her, I saw the depth of her grief. She apologized out loud to my sister and prayed to join her and Pa.
No parent should outlive their child and I saw in my 20s how Pa crumbled after the death of my elder sister and I was seeing it again two decades later with Ma.
On New Years Day, she took a turn for the worse when she got pneumonia and was moved to ICU.
She was also under nourished, as she was refusing to eat, and the doctor asked for my consent to intubate her for tube feeding.
Being intubated was Ma’s worst nightmare but I consented to give her a fighting chance.
My uncles and aunt waited outside her room as they didn’t want to see the process.
I stayed with Ma and held her hands while the nurse inserted the tube up her nostril, down her throat into her stomach – having to try five times.
I cried silently as I watched this happen.
Later that evening, Ma tested positive for COVID. Not only was her condition critical but we could no longer visit her per COVID protocols.
The following morning, the doctor asked for my consent to intubate Ma for machine-assisted breathing as she could no longer maintain life-sustaining oxygen levels on her own.
I consented to give her a fighting chance.
Knowing when to let go and stop fighting was the last lesson Ma taught me.
Last Sunday, on my last day in Manila, the doctor asked for my consent to surgically add a tube through Ma’s neck so they could intravenously give her medication, as it was no longer possible to do so using her bruised veins.
I had a frank discussion the day prior with all Ma’s siblings and based on our chat, I asked the doctor if these efforts were only prolonging the inevitable.
He sadly said yes.
I took a deep breath and told him we would like to let Ma go peacefully, as this was what she would’ve wanted.
The hospital allowed my family to say goodbye in person – and I was joined by her brothers and two of my cousins.
We were not allowed to go inside her room and had to stand outside, one at a time, and look in through a window.
It was very surreal for me to watch Ma, the strongest person I’ve ever known, look so weak and attached to machines and heavily intubated.
Her eyes opened a few short times and while the nurses said she was not alert, I believe in my heart that she knew I was there. When we made brief eye contact, her hands weakly lifted from her bed.
In the room next to Ma, the patient had gone into cardiac arrest and doctors were applying chest compressions, to no avail, to resuscitate them.
As I said my final goodbye to Ma, the other patient’s family gathered inside to mourn their loved one.
I found the moment incredibly surreal – almost like an out of body experience – and it reminded me that life is fragile and moves on all around us.
Nine days earlier, I flew into Manila at sunrise and I flew out at sunset.
During the 15-hour flight home, I thought how surreal and sad it was that I was going to be the only one left in my first family.
I thought about how much I missed the hubby and T – and that I wanted to be with them when the inevitable sad news arrived.
I thought about how hard the decision I had to make was, but that it was also the best decision for Ma, who was a very pragmatic person, and I felt very thankful I got to see her and say goodbye.
During the holidays, I unexpectedly flew to the other side of the world to visit my ailing Ma.
Ma moved back to the Philippines in July. In early December, her myositis autoimmune disease, which attacks and weakens her leg muscles, resurfaced and a few days before Christmas, she had a fall at home.
On Christmas Eve, a few days after being admitted to the hospital, I had a video chat with Ma.
She did not look well – very weak and no fighting spirit, as she has been struggling with grief after my sister’s death. So I decided to go see her in the event this would be a goodbye visit.
2023 was a year of many losses, so with this latest incident, Christmas Day was very stressful.
I worked hard to muster enthusiasm to open presents. I then kept to myself as I processed Ma’s situation and the idea of leaving the hubby and T for nearly two weeks, the longest we’ve been apart.
The hubby was so supportive and let me have Christmas Day to myself and he helped book my flight and pack.
Stress makes the mind play awful tricks and I thought of every worst case scenario.
Then I took very deep breaths, had a good sleep, and got up on Boxing Day with a game plan.
I prepped for my trip – which included creating an away and return plan for my unplanned time off work, doing long-term groceries and prepping dinners (e.g. marinated meats) for the hubby to minimize his work while I was away.
Parenting a child with FASD is hard work, much less doing it on your own while in the midst of a very busy period at work.
I flew out the following evening and T was in a super foul mood that day – screaming, swearing and disregulated.
In the afternoon, I suggested we go for a walk in the rain and stomp on puddles to calm down.
During our long walk, T stopped and started his sad whimper. His eyes watered and his pouting lips quivered. That was when it hit me: he was sad and upset that I was leaving.
I felt awful because this trip came together very last minute and T got no warning. He’d already had a year of many losses and I could imagine what my departure must’ve seemed like to him.
I reassured him it would be a short visit – and it was important I see and help care for Ama.
When we got home, we played a bit more together then I got him fed and showered before we left for the airport.
When we arrived at the airport, T gave me the longest hug and I did not want to let him go.
The hubby told me by text, after they got home, that T cried in the car as they drove off and kept watching a 2-second video he filmed of me saying bye as they drove off.
You can only imagine how my heart ached!
I too read this text over and over again during my flight. How I miss them both so much.
As I waited for three hours to board my flight, it sank in how long I was going to be away from my family.
As we started to board, it sunk in how little I was mentally prepared for the 17-hour flight.
As our plane departed shortly past midnight, I looked down at the city. Little did I realize at the time the journey that lied ahead.
A selfie I sent to the hubby shortly before boarding.
Christmas is a time for forgiveness and it is the kindest gift one could give and receive.
When we were having rough patches this fall with T – a part of the FASD parenting life – we met with our developmental pediatrician, who has been supporting T since he was 18 months.
In addition to adjusting his medication – mostly positive results so far – he suggested the idea of the redo.
It’s a simple premise: when T or the hubby and I have a bad moment, such as a tantrum or meltdown or less than ideal words are said, we let the moment pass and try it again from the top.
Writing Santa a letter the morning of Christmas Eve.
Lots of deep breaths and trial and error later, it is mostly working out nicely.
We even have T telling us sometimes that he’d like a redo after he has a moment.
Life is not perfect nor do we expect perfection in our wonderful chaotic parenting journey.
We try hard to remind ourselves it is the disability that wears us down, that we get upset with – not the child that tries his darned best everyday.
In hindsight, I attribute most of the rough patches this fall to changes in T’s medication and structures at school (e.g. his CYW support went from full time to part time; changes in daycare staff) and increased academic demands.
I am very proud of him and his progress and that he ended the fall term on a positive note.
T is obsessed with this obnoxious web series called Skidibi Toilet and our lovely Daddy found Skidibi Toilet wrapping paper for him. 💕😆
I’m not a religious person but I do believe in a Creator. I love the message behind Christmas, a symbolic time to forgive.
Forgiveness also extends to oneself.
I can be hard on T but I am the hardest on myself – the guilt and regret of not responding the best to a situation eat at me.
So it’s a kind and compelling message to receive that us parents can have a redo too.
I enjoyed reading fellow bloggers’ holiday updates and I’m happy to add we had a wonderful Christmas too (there are some not-so-happy updates, not involving T, that I’ll share later!).
We had Christmas Eve dinner at my uncle’s home and T enjoyed spending time with his Uncle J. He was disregulated at the end of the night, but that’s the beauty of the redo: tomorrow is a new day.
T got us up bright and early on Christmas Day to open gifts.
As I watched him open gifts, I thought what a blessed gift it is to experience life with the wonder of a child that still believes in Santa and the magic of the season.
We attended T’s wonderful school holiday concert this week and it moved me to tears.
The school concert was the first since the pandemic, and T and the kids did such a great job.
It brought back wonderful memories of holiday and Spring concerts, pre pandemic, when T was in preschool and kindergarten.
I remember we used to be so worried about T running amock on stage or having a Home Alone school concert moment – see below.
But the holiday spirit was in full support and T did great.
The theme of the concert was “Children of the World” and they displayed student artwork around the gym.
I love T’s whimsical art of him sticking his tongue out to taste the snowfall.
I loved that they displayed flags of different countries, including those currently at war, as it provided a reminder that there are more that unite us than divide us.
T’s sneaky teachers selected emotionally manipulative songs aimed at maximizing the tears; I say this jokingly and with deep appreciation.
T’s class did two performances.
It was during the second performance, when the group sang “I Believe” by Nikki Yanofsky, that I unexpectedly became a bawling mess.
“Sometimes when I feel I’ve had enough
And I feel like giving up
You willed me to be all I can be
Now nothing can stop me
I believe in the power that comes
From a world brought together as one
I believe together we’ll fly
I believe in the power of you and I.”
– “I Believe” by Nikki Yanofsky
The lyrics spoke to me in compelling ways.
I thought about our highs and the lows – and there were truly hard lows – and I couldn’t help but tear up.
The hubby had asked me to film the performance, so I didn’t have a free hand to wipe my tears. I could’ve punched him. 😂
But the embarrassment was worth it!
On days when parenting a child with FASD feels so hard, a reminder that “I believe in the power of you and I” is a true blessing. 💕
A week ago, when I downloaded the song at home so we could practice, I told T what a moving song it was.
And he said, I kid you not, “Just wait till you experience it in person.” 😆
He wasn’t kidding! 💕
Here’s an audio recording of the performance for your enjoyment!
Wishing you and your loved ones all the best during the holiday season and to remember to always believe in the power of togetherness.
I took part of Friday off to take T to a PA Day paw therapy program hosted by the amazing Surrey Place team as part of their ongoing services for children with FASD and caregivers.
T and I loved the horse therapy program they organized for the PA Day in October and he was so excited for this latest outing; he got ready in record time that morning.
There were four therapy dogs, brought in by their volunteer owners from Sunshine Therapy Dogs.
There were seven families, including us, most of whom we met in the prior outing.
I enjoyed sitting down and watching the kids, caregivers and adult staff play with the dogs.
T was apprehensive at first. He loves dogs – and often complains it’s not fair he doesn’t have a younger brother or dog and that all he has are two cats 🤣 – but he also gets anxious around them.
He asked to borrow my coat, wanting to use it as an armour of protection, and he rolled up his hands and his head inside them.
Getting chummy with Rosie.
By the end of the hour, he was on the ground and having a blast with the dogs, of whom Rosie the boxer he was particularly smitten with.
Research shows that dogs can bring a sense of calm and comfort for kids with special needs – and I certainly saw that magic happen with my own eyes.
I am so thankful for services such as Surrey Place. They make a positive impact in furthering awareness, community and wellbeing.
I am also thankful for how the universe brings people into my life in ways that are not coincidental.
Three years ago, I had a random conversation with a single mother at T’s daycare park. I deduced her two adopted children likely had FASD. It was the first and only time we saw each other.
And yup, you guessed it, she was at the paw therapy program with her eldest child. It took me a few minutes to realize why she looked so familiar and she was surprised I remembered her. 😊
I am glad she is getting supports now too.
It was hard to say goodbye to the dogs. I wanted to take Moose the bulldog home – but thankfully I knew better. 😆
Helping my third grader build writing skills is like making pizza; layer one ingredient on at a time.
The process sometimes feels like a struggle with a disability like FASD layered on top – but it nonetheless feels like I’m watching something special grow from infancy.
It brings back fond memories of the early days, when I obsessed over T being able to stack three blocks on top of another because that’s what toddlers were supposed to do developmentally; or counting the handful of words he could say; or reading his first words.
His short treasured history teaches us it’s about one step, one block, one sound, one word at a time.
Writing for T is a work in progress; he most certainly is not a fan of writing assignments.
If caregivers think doing homework with kids is tough, try layering on a disability that affects emotion regulation and impulse control.
I get called “dumb idiot,” “stupid fucker” or “fucking bitch” for initiating homework. And this is for spelling practice. I can’t wait for the nuclear meltdown when we work on essays one day. 🤣
Like pineapple on a pizza, I try not to take it personally, because it’s the FASD talking and once his verbal emotional diarrhea comes out and we co-regulate, he can do the work.
Consistency and routine are important for learning, even more so for children with FASD.
Occasional choice of words aside, T is a great storyteller and I’m often amused when I play with him or watch him play at how creative, articulate, funny and charming he is.
The trick is to help him translate all that good stuff and potential on the page.
Writing comes easier for me, as it’s long been an area of interest; it’s what I studied in my undergrad and I’ve done freelance work.
I am fascinated by the writing process and enjoy learning from others about their approach to writing, such as through Stephen King’s excellent memoir “On Writing” and William Strunk’s essential work “The Elements of Style.”
Learning practice is an important part of our weekend routine with T.
We block off 30 minutes each morning to read and do one activity focused on math or writing.
The key is to help him build mental models and learn how conventions like a title, introduction, transitions and conclusion all fit together.
T’s class was recently assigned a two-part procedural writing assignment: part one was to write detailed steps about how to make something and part two was to present it to the class.
T picked making pizza as his topic.
He and I first verbally listed the steps, which I wrote down. Then I had him write out the steps, including an introduction, transition words, and conclusion, helping him with spelling.
I think he did a very good job!
His penmanship needs works but it’s also come a long way. He’ll get there!
T then practiced hard over the weekend on his presentation.
We identified props he could use: dough, tray, pizza sauce (in a squeeze bottle), shredded cheese.
We discussed what his teacher expected: to talk clearly, not too fast or slow; regular eye contact; transition words; use props; detailed steps.
T loves to film “influencer videos,” so we filmed and watched practice videos to motivate him.
On the big day, the hubby and I got an excited text from his CYW that T did an excellent job.
“T explained how to make a pizza. He was very clear and he spoke to the audience. He even told them how long to bake a pizza for. As well as to cut up into triangle shapes and wait for it to cool then eat. Amazing.”
We were so proud and told T he did a great job.
As a reward, T got takeout for dinner – yes, not eating my cooking is a reward. 😆
His choice? Taco Bell. I guess he had enough of pizza.
The pizza he made after he practiced his presentation at home.
I started my blog as a way to process my thoughts on the FASD parenting journey and to raise awareness and advocate for a little known and often misunderstood disability.
Thank you to everyone who provides community; you are a lifeline to this parent who tries his best every day for our little guy with great potential.
Writing on this blog reminds me about the importance of stories.
Stories help raise awareness and bridge our differences.
Last Friday, after weeks of planning between T’s teacher and the FASD Coordinator from the Surrey Place, the latter visited T’s class.
She spoke about physical and invisible disabilities, including FASD and ADHD – through reading a book, a writing and drawing activity, whole class discussions, and lastly, a game.
In an update to parents, T’s super supportive teacher shared that “the purpose is to educate the class about unique needs in the classroom, how we can be more inclusive and understanding, and what that could look like for those students in the class (e.g. extra time or support needed).”
T’s CYW said the class was very engaged and asked great questions – and T shared how he’s sometimes affected by sensory inputs.
The hubby and I sent a note to T’s principal, teacher, CYW and librarian (see below) to thank them for raising awareness, understanding and empathy – and that their school is a model that others should follow.
Stories help people see themselves and validate their lived experiences.
After I did my co-deputation to the school board in September, T’s CYW suggested bringing in a speaker for the class as well reading stories about FASD and invisible disabilities to the class.
With T’s principal’s support, the school librarian reached out to the hubby and I for suggestions of books to add to their library.
I reached out to CanFASD, FASD United and Surrey Place for suggestions and sent a wonderful consolidated list to the librarian, who ordered the three books pictured above:
The books arrived last week and the librarian – who was T’s awesome kindergarten teacher – let T have first dibs on them.
We read the books over the weekend and T asked if he also has ADHD and I said yes – and that’s why he takes medication and needs extra supports in the class, like the character in the book.
We liked all three books and ordered copies for T’s personal collection.
Stories provide encouragement.
This week, we said goodbye to the staff that ran T’s after school program.
She had only been with the school for two months but made an impact.
We are always forthcoming with T’s diagnosis and she shared that her son has ADHD and we had conversations about our shared challenges and strategies.
It was helpful to have someone who worked with T that understood him as a parent too.
So we were sad when she decided she wanted a different career path.
On her last day, she gave each student a gift bag – and for T, she included a lovely note from her and her son, a year older than T:
“From my son to yours,
‘I like cars because they are fast but what’s most important is they are all different.
You could say all cars are made the same but drive different down the freeway.
Every car has faults that’s no one to blame, like me and you. We are different but one of the same. Aren’t we just different by name?
So T, when some make fun of you for being different, just remember this. We say to you: they are not angry, because you are different; they are angry because you are authentically you.
You’re awesome, T!’”
Stories remind us of where we came from and shine a light on the path ahead.
I then spent time reminiscing through photos of T, from when we first met and adopted him at age 1 through to present day at 8.
So many wonderful memories of playing at the park, birthdays, Halloween costumes, Christmas mornings, family roadtrips and vacations – and all the small stuff that seem so much bigger today.
I also revisited old blog posts and quickly saw the patterns of ups and downs – and everything in between.
It was a good reminder that life is cyclical – things do get hard on this FASD journey, but we got this, because we have each other… and there have been far more good than hard.
Most importantly, T’s story is larger than FASD; his life will be bigger than FASD.
Thank you for following along and I look forward with hope, heart and humour at the continued journey ahead with our T.
Photo at top: Camping at Bon Echo Provincial Park when T was 3.
One step and one day at a time. T, age 1, on our first summer cottage trip with my uncle’s family. He was just learning to walk up and down stairs!
My Life With T 