Horsing Around

The best things in life are not free.

Thanksgiving a year ago vs today, the dinner table is cozier and I am reminded how life flies by.

Friday was a PA Day and I took T to a fun and free activity organized by Surrey Place, the amazing organization that has supported our family since he was 18 months, when FASD was just a prognosis; formally diagnosed in 2022.

The event was a chance for caregivers and kids with FASD, 8 to 15, to hang out in person, after caregivers spent the past year getting to know each other through a virtual group.

The two-hour get together consisted of three parts: grooming horses, a picnic then a hike.

During breakfast at home, I mused out loud, “We’re putting six kids that have challenges with hyperactivity, attention, impulsivity and regulation in a room with horses. What could possibly go wrong?”

T quickly piped up, “I’ll get kicked in the butt.” 😆

But the activity went well. T was anxious at first, but the patient staff got him to brush and groom the horse.

I often read about equine therapy as an effective wellbeing tactic for kids with additional needs and I could see how it was indeed a calming activity.

And T didn’t get kicked in the face! If you set the bar low, you exceed your expectations! 😂

Afterwards, the kids enjoyed a picnic, thoughtfully prepared by Surrey Place staff, then played with each other in the open field, all bursting with kinetic energy.

It was T’s first time knowingly interacting with other kids with FASD and I felt peace and camaraderie as I watched similarly tempered kids enjoying being themselves.

We ended the outing with a short hike and I enjoyed talking to the other caregivers. I felt like we got each other and it felt so refreshing.

T is already super excited about the next meetup in December; a visit with therapy dogs. 🐶

Life as a parent of a child with FASD is challenging and on most days, it beats the crap out of me.

I reflected a lot the past week about the saying “the best things in life are free.”

They really aren’t.

Even love and life itself come with a cost.

When we open up our hearts to love, we also open ourselves up to heartache and grief. But we risk it all to receive love in return.

When we choose to live life fully, we open ourselves up to disappointment and failure. But we risk it all for joy, adventure, laughter and connection.

This is what being T’s parent is all about. We face the hardships head on, because of the sweet rewards that come with the challenges.

As I’m reminded this Thanksgiving, the best things in life, such as family, friends, health, community and the outdoors, are immeasurably priceless.

Cooking for the Soul: A Second Helping

In Chinese culture, we eat noodles during birthdays as it symbolizes long life.

When I watch T have instant noodles or spaghetti, two of the handful of things our selective eater will have, I joke it’s my life force he’s slurping away.

I often write about the importance of self care in the marathon journey of special needs parenting – be it diet, exercise, proper sleep, alone time, hobbies, connecting with loved ones, counseling.

Cooking is an activity I enjoy during alone time, picked up during the pandemic.

It’s fun, low pressure and if the meal doesn’t go to plan, it comes out later the same way as a Michelin star meal.

Thinking about my next cooking therapy adventure provides mental respite in my busy day.

There are so many recipe inspirations, whether they’re bite-size videos on Instagram or wonderfully-detailed blogs.

I also inherited cookware – such as a claypot and a steamer – from Ma after her recent departure, as well as nice plate and bowls from my late sister.

Browsing supermarket aisles for inspiration is also fun, such as my recent outing at Asian grocer T&T and daydreaming in the long ramen aisle.

Look at all that ramen options! We recently tried the Tonkotsu ramen with black garlic oil. Yum!

I also started to learn about plating techniques. According to top chefs, I can charge my family more for supper if it’s nicely plated. 😆

T gets annoyed when I’m in my cooking headspace, because it takes away from our Everest time. “Stop taking pictures of food,” he’d scream.

Maybe one day he’ll join the fun. But I’m honestly ok if it’s just time to myself.

Here are a few recent cooking therapy adventures:

Lamb and arugala salad. My original plating had three pieces of arugala and two dried cranberries but the hubby said it looked pretentious so I added more arugala. 😂

Lamb curry with garlic naan. The naan was store bought and I brushed it with butter. I hope to bake fresh garlic naan one day.

Spicy tan tan ramen was so satisfying to make. Who knew sugar free oat milk was key to that creamy savory spicy broth?! I’m also happy I’ve learned to make “ramen eggs.”

I made this French onion Salisbury steak with a pouch of onion soup mix long sitting in the pantry. A pleasant surprise! It also inspired me to learn about plating, because this looked messy.

Steamed egg and shrimp was so easy to make, using my mom’s steamer, and went well with rice!

Another steamer recipe – ginger scallion chicken.

Chicken congee is my go-to comfort meal. I garnished it with fried shallots, commonly used in Vietnamese cuisine, and chili oil.

Hot and sour soup. It was fun to demystify the process of how to make egg ribbons.

I made this Mexican-inspired dish with a pouch of taco seasoning also long sitting in the pantry.

Caprese salad is one of my fave salads.

Spicy peanut noodles.

Spicy peanut noodles topped with crushed nuts.

Lemongrass chicken dressed with green onion oil.

Curry cauliflower dressed with curry yogurt.

Spicy green beans. I used a lot of dried red chili and Sichuan peppercorn.

Cypriot potatoes garnished with dill and dipped in a lemon honey yogurt sauce. I learned that cinammon can be used for savory dishes!

Other Cooking Therapy Adventures

Uplift through Testimony

There is power and purpose in sharing stories. One voice can join a chorus to make a difference.

This week, I joined a director from the Surrey Place to make a deputation to our school board, the largest school board in Canada and one of the largest in North America.

Our goal was to raise awareness about FASD and to advocate for more awareness, supports and training for students and staff – including commemorating FASD Day every September and recognizing FASD as an exceptionality.

We had been planning to do this since Spring and our last two tries were postponed as the relevant committee meetings were cancelled.

It worked out for the best as the meeting we deputed at was the one attended by all school trustees, which are citizen-elected positions.

This was my second time making a deputation; the first was in January 2020 after T’s specialized program was cancelled due to budget cuts.

As a special needs parent, it is essential to be your child’s advocate.

It is exhausting and can be demoralizing as you often wonder if your voice is making a difference.

I believe it does. And when joined together with a community chorus, the message can be amplified.

I walked into the delegation room and immediately felt nervous.

We arrived early to scope out the space. The hand emoji is pointing to where I sat and spoke.

It was a different room from my last deputation; larger, double the member seats and two large screens displaying members joining virtually, meaning I was being broadcast online.

I do public speaking for work, but the stakes were personal, so I felt antsy. I had a busy day at work so I didn’t get to practice.

I reminded myself I only had to speak for 2.5 minutes and I thought about T, the hubby, his CYW and school, and it calmed me down.

The meeting started and we were up first; the Surrey Place director and I had 5 minutes total.

She went over by a minute and made good points. I lost 40% of my time and improvised on the spot by skipping over chunks of my speech, while keeping an eye on the countdown on the big screen. I finished with three seconds to spare!

The reaction from the trustees reinforced why it’s important to advocate for FASD.

I thought we’d be met with crickets but we generated good discussion.

One trustee asked if we think it should be up to the Ministry at the provincial level and not the Board at the city level to determine if FASD is an exceptionality.

This is the frustrating ping-pong game politicians play to pass the responsibility.

So I said the trustees and board can advocate to the Ministry. What I wished I said, in hindsight, was the board can demonstrate leadership by setting a good example for other boards to follow.

Another trustee asked what is the impact of having a student with FASD in the classroom on other kids.

I responded by reminding him the board has an inclusive approach to education and that with the right supports, students with FASD can succeed.

Another trustee asked what is it that we hope to achieve with awareness.

I responded by saying that with awareness, we can build understanding and empathy. I shared that it wasn’t until 7 years ago that I knew what FASD was and I am often reminded just how little awareness there is of this invisible disability.

With awareness, training and supports, teachers can provide the right approach for students with FASD to help them thrive.

The pleasant surprise came when one trustee shared that in February 2020, a month after my first deputation, a motion was made to recognize September as FASD Awareness Month.

She was the co-author of the motion and I politely let her know that as a parent, I have not seen any action from the board to recognize this month and she agreed they need to do better.

As we walked out after our deputation, another trustee approached us and let us know that a message is sent to board staff during FASD month.

I let her know the message needs to trickle down to school staff, parents and students – and that schools need to visibly recognize this day – for this motion to have meaningful impact.

And so, the advocacy continues.

The amazing FASD coordinator at Surrey Place had gathered 30 statements from parents, students with FASD, service providers and medical experts and provided a package of printed statements to each trustee at the meeting.

We will follow up with the two trustees whom we agreed came across as allies to continue the advocacy conversation.

I’m not naive enough to think a 5-minute deputation will change the world.

But every contribution counts towards a larger whole.

If we just helped a few light bulbs go off in that room then I consider it a job well done.

And I think we did.

Transcript of My Deputation

Here’s a link to an edited transcript of my delegation. I edited identifying details out for privacy reasons.

The Power of Yet

T asked the lifeguard if he could try the deep end test. It was his first-ever attempt. Would he make it?

I thought about this recent outing at the community pool, as it’s goal-setting time for the school year.

This year, I love how T’s teacher included the kids in the process, using the Power of Yet model.

Growth mindset is an important message for kids to learn and I appreciate how schools have shifted towards this approach in recent years.

When viewed through the eyes of an individual with FASD, and their caregivers, it is a powerful reminder that just because you can’t do something yet, it doesn’t mean it’s not achievable one day.

T gets easily frustrated when he stumbles – and in turn, it is frustrating for us as his parents – so a shift in mindset can be beneficial.

I’m aware that not everything is achievable with a positive mindset, but everything is worth a try.

T’s CYW shared proudly in her daily log that T set his own YET goals for the year.

Y (You)

  • Making friends
  • Keep hands to self
  • Sharing activities
  • Taking turns

E (Education)

  • Learn times table
  • Writing neatly
  • Spelling hard words

T (Technology)

  • How to log in on the laptop
  • Researching
  • Zoom with grandparents

After reading them, I too felt proud.

The hubby and I are also setting goals for T, through the annual Individualized Education Plan process.

The IEP is a tool the school creates to provide accommodations and supports in the learning experience to maximize T’s success.

Parents can provide input towards the IEP by completing a questionnaire and a consultation meeting with the teacher, who drafts the IEP.

It is a legal document that schools are accountable to follow.

This is our 4th IEP and it’s interesting to review the previous year’s document to see what still applies; many of them do, including highlighting his challenges around hyperactivity, focusing on and completing tasks independently and regulation.

We also make sure to highlight his many strengths, including: his bright, funny and caring nature; his aptitude for sports; and his desire to do well. We emphasized that while T may have challenging moments, experiencing his successes together can be immensely rewarding.

School is often stressful for kids with FASD and we see this in T. The days are long, there are many demands on him – and at the end of the day, he’s often had enough and is often moody and more prone to meltdowns.

We get it. It’s a work in progress. Annoying and hard as hell to experience, but we get it.

We try to provide opportunities to destress through things he enjoys – park time, biking, swimming and swim lessons on weekends.

I continue the weekend learning with him but keep it fairly light. We read one picture book together and practice math drills.

We need to work on his reading stamina and interest but his growth is undeniable. And it’s wonderful to see him start to learn the times table through practicing with flash cards I made using dollar store index cards.

Question on the front, answer on the back.

The Power of Yet is a good reminder that every day or every moment doesn’t have to be a home run or gold medal worthy.

The try is often the most important part of the learning journey – and to break it into smaller steps.

And during this recent weekend’s deep end test, T tried valiantly. His strokes and breathing technique were sloppy, he paused longer than he should’ve at the end of the first of two laps, and he didn’t finish his second lap – but he was close.

So he didn’t pass.

But I saw how determined he was and praised him for a solid first try at a difficult test.

I told him with utmost sincerity and belief that with constant practice, he will be in the deep end by next summer.

Fried Spam with Rice

Like many immigrant kids, I’ve experienced many “smelly weird” school lunches packed by Pa.

But I loved them all and the one I looked forward to most was fried spam on a warm bed of rice.

I would inhale the luncheon meat, its greasy goodness soaked up by the rice.

This weekend is Pa’s death anniversary and I marvel at how quickly 15 years flew by.

Pa was calm, patient, even tempered – qualities I often lack during the eye of the storm of parenting a child with FASD! 😆

My memories of Pa are about the small things that feel bigger today: waking up first in the house to prepare our lunches, prioritizing our academics, role modelling healthy eating and living.

If it wasn’t for Pa who insisted our family immigrate to Canada so my sister and I could have a better life than in the Philippines, I would never have been T’s parent.

All these years later, I still recall weekend walks in our Philippines neighbourhood with Pa. I don’t remember specific sights – but I remember the warm feeling of walking side by side with Pa.

Life moves in full circles and with symmetry, guided by a force bigger than us.

During our bike ride this morning, T wanted to venture out to the main roads – which we’ve never done before as we’ve always kept to the safety of our neighbourhood streets.

Thinking about Pa, I took a leap of faith and said, let’s go beyond our boundaries – and gave T clear directions to stay on sidewalks and to stop at every corner, stop sign and light.

T wanted to bike to our local supermarket, which we usually drive to, and we were out for over an hour and biked over 10 km.

T did an amazing job and followed instructions.

I would like to think that years from now, he will remember the feeling of these bike rides too.

When we got home, I made the hubby and I fried spam and rice for lunch, while T had KD.

I sprinkled nori on top and enjoyed the meal with chili garlic sauce on the side.

We then went to the first session of T’s fall swim lessons. Now in level 4, he has improved so much since starting lessons last Fall.

We then visited Pa, bringing him new flowers, as we do every death anniversary.

When we got home, the hubby and T baked gingerbread cookies, using baking mix T picked up during our Friday night grocery run.

We started the gingerbread army with these three.

Tree of Life

There is a special tree, that sways to the side like a painting, that serves as a route marker of time.

Killbear is special because it is the first place we camped together at as a family.

It is the first family vacation we took during the pandemic and we were so excited to get back out into the world.

This moment of T and I looking out into Georgian Bay encapsulates so many emotions about life.

It’s family tradition to take a photo of T with the iconic Killbear tree – a white pine that is over a century old – one we’ll continue as he gets older.

Here he was in 2016 at 18 months…

… in 2017 at 2 years…

… in 2020 at age 5…

… and our recent camping weekend at age 8.

I often think how fun it would be to have a photo one day of an adult T with his own little one – a full circle moment.

But if you look closely, there is now a beam supporting the tree.

A sign on the beam reads: “This tree has been the symbol of Killbear for decades. Sadly it is in decline and needs support. Please do not climb.”

When I first saw this, during our early Saturday morning hike, my excitement turned into sadness.

The tree’s state reminded me about life – and to enjoy every moment, even the declining period.

I thought about how wonderful it would be if everybody rallied around our most vulnerable – in T’s case, individuals with FASD – with the same fervor of support as they did this tree.

Life would bloom with more possibilities.

Who knows how much longer this tree will be around – maybe it won’t be here at our next visit.

But there’s no point worrying. We only have the here and now.

And even if it’s a stump one day, we’ll still visit and treasure this spot for all that it represents to our family.

Community Rocks

As the sun descended over Georgian Bay, crowds started gathering on the rocks by the water.

It was our second night of camping at beautiful Killbear and we were enjoying an after dinner walk to soak in our final evening.

Sitting by the rocks to watch the sunset is a tradition and I love how calming it is.

It made me think about communal experiences that bring people together, like parties, school, church, concerts, parades, fireworks, and so on.

There is something beautiful about people co-existing in a shared experience, everyone drawing their own meaning from the moment.

Today is FASD Day and it is celebrated annually on September 9 to raise awareness about Fetal Alcohol Spectrum Disorder, an invisible disability that impacts 3 per cent of the population.

The hubby, T and I have been on the FASD journey for over 7 years – each day bringing new successes, challenges and lessons.

One key reason we’ve been able to find success in the daily chaos is community.

These include direct supports such as our family and friends, school staff, community and specialized services such as the amazing Surrey Place and Community Living.

Indirect supports include online support groups and advocates whose work I admire from afar.

And of course, the amazing WordPress community who enrich my “free therapy” blogging with your kind and supportive comments.

A fellow Canadian blogger sent me a kind email this week to show his support for the parenting journey.

He drew parallels to his experience working with individuals with FASD:

“On their best behaviours they were two fabulous human beings, but they could change in seconds into two handfuls of stubborn button- pushing assholes that I could not control.”

Not everyone with FASD is like this, of course, but I had quite the chuckle, because he described T at his hardest moments.

Communities can form around anything – like this gorgeous daily sunset.

I am appreciative of the advocates who’ve built communities around FASD that has enriched my family and parenting.

In turn, the hubby and I have spent the last seven years doing our best to build and advocate for community around T.

We are protective of this community.

I recognize that more work to advocate, raise awareness, reduce stigma needs to be done – and I hope to do my part to grow the FASD community.

Communities thrive when there are moments to come together to rest, reflect and rejuvenate.

Bare feet on smooth rocks, cool comfortable breeze, sitting silently next to each other, calming swishing water.

T spent most of his time playing with boys as they gathered around a puddle, trying to catch a frog.

Then a big fluffy dog caught his eye and he asked the owners if he could pet the dog – and well, they got along beautifully.

After the sun dipped below the tree line on the horizon, the crowds dispersed.

Then we headed back to our campsite to start a fire.

Shooting Stars

Night hikes are a camping tradition and when darkness fell, we excitedly set off for the rocks.

After our spontaneous sunset swim and jumping off beautiful rocks at Killbear, we roasted marshmallows and made s’mores at our campsite.

T was now sugared up on s’mores and a watermelon slush from dinner.

He was bouncing off the walls with excitement for the hike – climbing trees and jumping off a boulder and picnic bench on our site.

It was past his bedtime and he was overtired and getting mouthy when we asked him to calm down.

But we knew these hikes happened once a year, so we changed to long sleeves, put on bug spray, armed ourselves with flashlights and set off back up the rocks.

We passed by the dark beach and it was calming to hear the water and see silhouettes of people enjoying the evening.

It was more challenging to hike up the rocky inclined path in the dark, navigating the jagged or slippery rocks and tree branches and roots.

But the view at the top was well worth the trek – beautiful Georgian Bay lit up by a full moon.

With no light pollution that we often have in the city, the stars were in clear mesmerizing view.

We lied down on the rocks and looked up at the sky.

T watched the stars for five minutes cradled in the hubby’s arms then decided he had enough.

He got up and started running around, fiddling with his flashlight, getting light in the hubby’s face – annoying him as he missed the two shooting stars that I saw.

Sitting in the dark, I let my mind tune T out and I focused on the gift of this moment.

It’s been an interesting journey parenting T and there truly have been some hard lows – moments when my mind went to truly dark places.

But the blessing of this night reminded me that we can let darkness consume us or we can focus on the bright stars.

I made two wishes with the two shooting stars I saw. And no, it was not to take T’s FASD away. It’s a part of him and I’ve made peace with that.

I wished for T to grow up happy, healthy, independent and self sufficient, successful, and to be surrounded with light, love and friendship.

I believe this wish is within reach.

T can be a real pest and he drives us batshit crazy often – but he is good at his core.

On our hike up and down the dark rocky inclined path, T had no problem zipping ahead of me. I am a slow hiker as I love to savour the moment.

Every few moments, T circled back to me to shine his flashlight on my path. “Here you go, so you don’t trip.”

Often times, I think it’s the hubby and I that’s shining a light on this kid’s path in life – but really, he also illuminates our lives with his bright light.

Leap of Faith

We were racing against sunset as we hiked up the rocky hill to get to the cliffs to jump into the bay.

It was our first day camping at Killbear and we had just finished dinner. We had decided we would do cliff jumping the following day, but T was insistent, so the hubby and I decided, why the hell not.

We quickly got changed and hiked towards the cliff as the golden hour sun bathed the rocks, trees, beach and scenic Georgian Bay.

Jumping off these rocks is tradition at Killbear, one the hubby and I first discovered with friends over a decade ago and one we were excited to introduce to T when we first took him camping at age 1.

At age 5, in 2020, he leapt off the rocks for the first time, quite fearlessly.

I thought the three of us were the only ones dumb enough to be doing this close to night, but the spot was still busy.

I love that this is an all ages activity, parents passing down this past time to their children, older kids coaching younger kids, everyone patiently waiting their turn and cheering others on.

The hubby and I quickly jumped in and the cold refreshing water woke us up faster than coffee.

Surprisingly, T hesitated… and hesitated… until the sun went down and we had to call it a day.

He said he wasn’t scared of jumping, but rather, the water looked very cold. No worries nor biggie.

We went back the following afternoon, but the bay was like a wave pool – the strong winds had gusts up to 50 km per hour! – so we enjoyed watching stronger swimmers jump instead.

It was on Sunday morning, before going home, that we headed out for an early morning jump – our final outdoor swim for the summer.

The water was calm and T was determined and, with minimal hesitation, he jumped in.

My heart soared with him.

T first made this jump before at age 5, but it felt different this time.

It was the three-day build up, the determination to do it despite his initial hesitation, and it was the steps that took us there.

Life with a child with FASD requires us to be regimented with structure, as routines help our often impulsive kids build predictability, ease transitions and minimize meltdowns.

Disability or not, adults fall into set ways, our brains wired to follow structure and avoid risks that deviate from our patterns – because life experiences teach us to know better.

And on most days, who the hell has the time and energy when we’re just trying to make it to the end of our day in tact.

But we can all learn from kids like T, to live in the moment… to be spontaneous.

T may not have made that jump that first evening, but going up to those rocks treated us to an unexpected time, as we enjoyed a glorious sunset by the cliffs.

These painting-like views will be cemented in my mind for quite some time.

They remind me of what’s possible when you just give in and take a leap of faith.

Our Budding Influencer

“Hi guys,” T says sweetly and excitedly to his phone, on video record mode, to his imaginary followers.

He goes on to narrate what he’s doing, emulating the online influencers and livestreamers he enjoys watching, like Ethan Gamer.

It appears we have a budding influencer.

T started doing this at his grandparents’ cottage during our visit earlier this month, using the hubby’s old phone that he inherited, and his videos are usually of him touring our home, playing with toys, or pretending to cook.

It’s innocent and adorable and I’m not too fussed, as the videos are not posted or live-streamed.

I recognize T was born a digital native and this is the world he’ll mature into.

I think about how FASD will influence his life as a digital citizen – and am mindful his impulsivity may increase his risk of trouble or danger.

I also worry about T growing up in a world where social currency is measured in likes, views and followers – and the effects that may have on his self esteem and mental health.

That’s why I’m glad schools teach digital and media literacy starting at an early age – and we will have conversations with him about digital safety and citizenship as he gets older.

The hubby and I supervise his use of devices – including no data on his phone, parental controls and he can only use phone on weekends during the school year.

We recognize the benefits outweigh the risks.

Seeing and hearing him make his videos give me joy. I think about how he’s building digital skills, creativity and ways to express himself.

I hope this will help him grow his confidence as a public speaker at school.

And who knows, when he’s older, maybe he’ll get into hobbies like podcasting or even make a career out of digital content creation.

I am, of course, getting far ahead of myself. For now, I will enjoy this for what it is. Innocent fun.

When T got home tonight, I was nearly finished making his dinner. He quickly looked for his phone then started to “stream” to his followers.

At one point, T was talking and I responded then he quickly retorted, “I’m not talking to you. I’m talking to my subscribers.” 😆

Oh this kid.

And now, I must end this post because I promised him we’d go to our basement crawl space to start packing for our upcoming weekend camping trip.

And of course, he wants to share the experience with his “followers.”

“Ok guys,” he says excitedly to his phone. “In one minute, we’re going into the crawl space with Papa.”

I surely must go. This kid is on my case and nagging me. Have a good night, all!

Catch and Release

Kids catching lobsters washed up on the beach gave me a good reminder about abundance of gratitude.

On the second morning of our recent visit to T’s grandparents’ cottage, we went for a walk by the beach, an activity T enjoyed several times a day.

We stumbled upon three boys carrying buckets and excitedly catching lobsters!

In the 19 years I had visited the cottage, this was the first time the hubby and I had seen such a thing – and we guessed it was a combination of the high winds the previous day and low tide.

I thought this is what childhood summers are all about. It felt joyful and T (pictured below on the left) excitedly inserted himself into the play.

The hubby and I got into it too, although he went into the water and I stayed close to shore. 😆

The kids made it look so easy, as we didn’t have any luck finding a single lobster.

But we did encounter our inner child.

The kids caught five lobsters – tiny, a pound each, but nonetheless exciting – and their parents asked them to release them back in the water.

This moment made me think about how fleeting life is – the good, like joy and success, and the bad, like stress and anxiety.

Very few things are truly permanent nor ours to keep – regardless of how much we want to hang onto the moment and bottle it up forever.

It’s a reminder to weather the rushing rivers that always lead to calm waters.

And to be present for the good stuff. To enjoy the experience then let it go – and have faith there are more good times ahead.

Speaking of fleeting, T ran back to the cottage to pee and that was the end of lobsters for him.

And of course, I didn’t know it at the time, but I would get very sick the following morning.

But before all that, and later that night, T and I had fun spontaneously digging up a few dozen quahogs at low tide sunset.

I do so wish I could bottle up this moment forever – but it was what it was and I look for these moments throughout each day.

They are often small – like our bike rides after dinner, T reading with me, swimming at the outdoor pool, or this rainy morning when T got up early and gave me a warm good morning hug.

This past Sunday, I got quite cranky in the car, because we were late for a family lunch – avoidable, but some people *ackem* have issues with getting ready on time.

Trying to diffuse the snark between the hubby and I, T spoke up and told me, “Think of the happy stuff and ignore the bad stuff.”

This, coming from a kid who often gets escalated, cranky and angry, was quite rich.

But I did smile, calm down and hung onto that unexpected feeling of joy and pride.

Then I let it go.

Yummy family lunch at Vietnamese restaurant to celebrate cousin’s birthday.

All That We Leave Behind

In the end, it’s about memories and we hang onto photos and things that remind us of loved ones.

In a year of losses, our family experienced another loss – Ma moved back to Philippines at the end of July.

We knew for over a year this day was coming – it was delayed due to my sister’s illness and death – but it was still hard.

My family and I spent time in July helping Ma declutter her apartment and pack.

Ma and I are minimalists, so deciding what to donate or dump was easy.

It was still an effort getting Ma to focus, as she waited until the last minute to start.

At one point, I asked Ma to get off Facebook and focus. She replied, “I haven’t posted in days and don’t want my friends to think I’ve died.” 😂

We keep the memories

The hubby and I decided to keep a few things:

Photo albums

These albums predate my existence and contain priceless memories. I will guard and treasure them.

Artwork

This Chinese artwork hung on our family’s living room and it reminds me of Pa and Ma.

Kitchen Supplies

Ma had cute kitchenware that made yummy dishes over the years. I now have my first clay pot and one to remember Ma by.

Loss is harder when you experience it as a child and as the parent of a child.

Ma left on a Wednesday evening and we dropped by on the Monday and Tuesday.

T likes to tease Ma. He often smacks her on the butt – and while Ma does think he’s a handful, she loves him.

Near the end of our visit on the Tuesday, the reality sunk in and T started crying.

The poor kid has experienced so much loss lately and my heart ached for him.

On Wednesday night, after work, we dropped Ma off at the airport and said our goodbyes.

A few days later, the hubby and I emptied her apartment. I had a 39 fever – this was when my pneumonia likely started – but we still had to do the heavy lifting.

It’s funny how life flies by – one minute they’re there and the next, they’re not.

Food brings comforting memories

It’s been three weeks since Ma left and we try to video chat frequently.

We now have an incentive to visit Philippines and hope to do so next year. It’ll be T’s first visit and the hubby and my first since 2010.

I’m not sure how we’ll survive the 16-hour flight with T but life always figures itself out.

This evening, I made chicken claypot rice using Ma’s claypot and this Wok of Life recipe.

I’ve always wanted to make this comforting dish – and it was indeed comforting, in more ways than one.

Main ingredients are jasmine rice, chicken thigh, dried shitake mushroom, dried black fungus, dried lily flower and an assortment of spices and seasonings. Garnished with green onion and dried shallot.

Photo at top: Swimming at scenic Elora Quarry at the beginning of summer in June.

Has To Be

How do you best explain the concepts of faith, God, heaven and angels to kids?

During bedtime on Monday, T said in a panic that he wanted to live forever and was afraid of dying because “what if angels aren’t real?”

Since his Auntie, my sister, passed away after last Christmas, T found great comfort in the belief that she is an angel, sitting on a cloud.

The hubby doesn’t believe in God and I do – and we peacefully co-exist with our beliefs.

I have a love-hate relationship with religion. When I was a teen and came out to my church, the pastor said I needed to see a psychologist, because being gay is not normal.

That turned me off religion for many years but as an adult, I believe in God and that faith brings comfort and healing.

I separate faith from religion; the former is a personal journey, whereas the latter is organized and often creates conflict in the world – and I have no patience for that.

“I know there’s someone out there
Waiting for me
There must be someone out there
There just has to be.”

– “Has to Be” by Madonna

As faith is a personal journey, I believe in helping kids ask questions to guide them through their journey, including learning about different belief systems and resisting the urge to tell them what to believe.

I’m not sure what precipitated T’s recent panic but he said he did not want to die, because he’s worried he won’t become an angel, as he’s not sure if they’re real or not.

It was late, I was tired, and I was not sure how to answer the question. So I asked him if he believed in angels, because that’s what’s important.

Then he did something that just made my heart melt, because it was so adorable.

He got out of bed, went to our room to ask Alexa, our smart home device, if angels were real. He said, “I hope she tells me they’re real, because I will cry forever if they’re not.”

God bless Alexa and her astute response was along the lines of people’s beliefs will differ based on their religion.

I thought it was a brilliant answer but T was not fully comforted by the answer. As of today, he’s still exploring this question.

And you know what, that’s ok, because it’s what makes being human so beautiful – our continued search for meaning and something bigger than us.

The following night, last night, he said something that was so touching. He said that if he became an angel, he would come down to Earth and wrap his feathers around us so we could be safe.

Life is filled with many unknowns. But I believe in this wholeheartedly: This kid drives us nuts, he has a sailor’s potty mouth – but despite his disability and challenges, he is pure and good at the core.

I have no doubt he will be a wonderful angel one day – hopefully not for a long while.

Happy 65th birthday today to my dear M! We were supposed to attend her concert last Sunday but it got rescheduled to January due to her illness. It worked out for me as I was on the mend from pneumonia. Talk about divine intervention!

Rain or Shine

When things don’t go as planned, like pneumonia ambushing vacation, I look for the silver lining.

We had a nice 10 days visiting T’s grandparents in New Brunswick, despite me being ill for most of it.

On our third day, I started to feel nauseous, had shaking chills and developed a fever – which reached a scary 40.3.

I was in bed for three days and coughed up bloody mucus and felt out of breath.

I went to the ER and the doctor confirmed it was pneumonia and started me on antibiotics.

I felt guilty that my illness restricted our plans but in hindsight, it ended up being a blessing.

The hubby and T spent one-on-one time with T’s grandparents – including them taking T to the park and McDonalds and the group going for drives.

I got my wish to take long naps during the day, with the saltwater breeze nourishing my soul; next time, I’ll specify I want to enjoy naps without being sick!

While we didn’t get to go out for hikes or swims, we enjoyed many walks by the water, bike rides by the cottage, and played cards – my in-laws introduced me to a super fun game called Five Crowns.

I started to feel better on the last two days of our trip, so of course, those days rained all day. So we took T and his cousin A to the movies – and spent the rest of the time relaxing at the cottage.

T and A kept busy building forts (below) and watching YouTube videos together; it warmed my heart seeing them deepen their bond.

The last day on our trip was the hubby and my 14th wedding anniversary. We celebrated by going for a short drive to fill up gas for our drive home. 😆

The rain stopped in the late afternoon and we enjoyed a family walk on the windy beach.

The hubby really stepped up while I was sick – taking care of T, measuring my temperature and giving me Tylenol every four hours when I was battling the fever, and sitting with me in the ER.

In sickness and in health, rain or shine – the vacation may not have happened the way we imagined, but it was perfect the way it happened.

T, being T, kept it real. When I finally emerged from being in bed for days, he told everyone, “Papa is so lazy. He just sleeps all day.” 😆

And an unexpected gift, I’ve reached my weight goal – and even got my jawline back! 🤣

The entire time I was sick, I had no appetite but I kept thinking about pork bone soup from my favourite Korean restaurant Owl of Minerva.

It motivated me to get better and through the 16-hour drive home.

When we arrived home Thursday night, I picked up takeout from Owl. It was well worth the wait!

Before Sunset

Nature reminds us that often times there are good stuff yet to come near the end of our days.

At the start of the final stretch of our drive to visit the hubby’s parents, we stopped to gas up near Edmunston, New Brunswick.

We were treated to this awe-inspiring breathtaking sunset – pictured at top.

Sunsets are the day’s last glorious hurrah – showy at times – before night falls.

It’s a reminder that some of the brightest and captivating moments in our days can happen before night falls, if we keep ourselves open.

T enjoying a sunset walk with his grandparents.

Last Tuesday night, T and I went for a sunset walk by the water – his grandparents’ cottage is right by the saltwater bay.

Low tide was coming and we dug up quahogs for an hour till dark.

I showed T how to dig the first few. Then once he figured out the technique, he helped me find over 40 quahogs.

Look at this big one he found! His big gaping mouth says it all.

The mosquitoes were out in full force – but T and I had repellent on and weren’t going to let them ruin our fun.

He ran into the cottage to get his grandparents and the hubby to come out to look at our catch.

There was a smidge of daylight left and T’s grandad set up a fishing line by the water, where they spent 1-1 time together.

A few days later, the hubby made a delicious clam chowder with the quahogs that T helped dig up.

This is what they mean by life’s simple pleasures.

Often times, we feel that the best moments happen during the early parts of our days and there is a dread of the night.

But as nature often reminds us – everything is cyclical and often times, we are blessed with bursts of colour before night falls.

Then we get up and do it again.

The Odyssey

Off we go. Join us for live updates along our 16-hour drive to the East Coast of Canada.

It’s our annual two-week summer roadtrip to visit T’s grandparents in New Brunswick.

I love family roadtrips for many reasons – bonding, listening to music in the car, taking unplanned detours, delicious food stops, snacking on junk food, getting lost in thought and feelings of hope, and dreaming about the future together.

In the last 7 years, we’ve had many memorable roadtrips with T – my favourite being the week-long trip to Thunder Bay during the first pandemic summer in 2020 and driving through breathtaking Lake Superior (pictured at top – does not do the views justice).

As far back as Homer’s Odyssey, the concept of the journey has long fascinated people – the idea that you don’t finish the quest the same person as you started.

The destination is the cherry on top, the journey and all the milestones along the way are the prize.

This year’s quest got off to a sputtering start – a day late! The hubby and I both got sick (kids and their damn germs) and I was stuck in bed the day we were supposed to leave.

Alas, a day lost in the grand scheme is not a big deal. The sun is shining and here we go!

10:00 a.m. – Kingston, Ontario

Two hours into our drive, we took a bathroom break at the En Route in Kingston.

I was excited to see a Popeye’s Chicken, because only on roadtrips do I have a craving for fried chicken in the morning. Alas, it was closed.

This is the first roadtrip we’re bringing bikes with us! It’s going to be exciting to explore the trails by T’s grandparents’ cottage.

The hubby installed a bike hitch on our car. It’s holding up well so far. 14 hours to go!

12:10 p.m. – Ontario-Quebec Border

The trick to surviving a long drive with T is taking frequent breaks.

This playground at the Montreal side of the border is a regular milestone for us. There was a time when T was dwarfed by this sculpture. Now it’s a breeze for him to climb.

4:00 p.m. – Outside Quebec City

One of our favourite pitstops on the drive out East is Normandin, a restaurant with delicious pasta that T loves – and what made him decide he likes pasta sauce with meat.

I like their BBQ chicken.

We’re having an early dinner then have 6 hours of driving to go.

6:00 p.m. – Somewhere in Quebec

T is passed out, which is great.

In our early roadtrips, he would resist napping and we dreaded when he fell asleep because he’d wake up a short while later, very disregulated and have a meltdown that’d last for a while; and driving off the road seemed like the way to end our suffering.

Now, he can nap 1-2 hours and wake up pleasant.

Small blessings. 😊🙏

7:10 p.m. – Near Quebec – New Brunswick Border

This part of the drive is so beautiful – despite the dark clouds on the horizon.

I’m thankful the hubby and I can tag team this drive – 3 hours on, 3 hours off – as it makes the 16 hour marathon bearable.

T just looked out the window and exclaimed, “Look at all those trees. Good job trees. Making all that air for us.”

Yes, I think we’re nearing the point of delirium. About 3.5 hours to go. We can do this!

7:25 p.m – Even Nearer to New Brunswick Border

Nothing like a joke to break the tension.

T was getting cranky and acting and talking like a brat.

Then this beautiful rainbow appeared through the dark clouds.

“There’s a pot of gold at the end of the rainbow,” T said.

“I already found my two pots of gold,” the hubby said.

“Papa’s not a pot of gold, he’s trash,” T said, trying to get my goat.

I quickly snapped back, “And you’re the leprechaun, cuz you’re short and annoying.”

I expected T to snap back angrily but he just started laughing out loud.

Then we all laughed together.

Small blessings. 😊🌈

8:40 p.m. AT – New Brunswick border

We hit New Brunswick, finally – 3 provinces in one day – and one hour ahead than Eastern Time.

It’s the home stretch. 3 hours to go.

I’ll be taking over for the rest of the drive as soon as we hit the next rest stop.

We have about an hour left of daylight and when it gets dark, the drive gets a bit hairy cuz you’re always on the lookout for moose. 😆

T is still in really good spirits. At some point soon, we will shove a phone in front of his face to sedate him for the final stretch of the drive. 🤣

See you at the finish line!

12:15 a.m. AT – New Brunswick

We arrived. I’m tired. Will write more later. 😆

Croup Summer

Nothing like a nasty viral infection for poor T to tell us to slow down our summer.

On Thursday, T started to complain of a sore throat.

By Friday, the sore throat was unbearable. We did a COVID test and it was negative. T woke up twice at night, crying his throat was hurting.

By Saturday, his voice was hoarse and he had a bark-like cough. He wanted to go biking, but came back within minutes, because he was out of breath.

By evening, he had a low fever and we did another COVID test. He said it hurt to breathe, and after consulting with the hubby’s mom, a retired nurse, the hubby took T to the ER.

“Fever dream high in the quiet of the night

You know that I caught it”

– Cruel Summer by Taylor Swift

After an X-ray, the doctor said he had croup.

I’ve never heard of this before, but researching it online confirms it is “a very contagious respiratory infection that… causes swelling of your child’s voice box (larynx) and windpipe (trachea), which leads to symptoms including a distinctive barking cough and raspy breathing. Croup is usually mild but symptoms can become severe and life-threatening.”

The doctor assured us T was ok and gave him a steroid to help reduce the swelling of his larynx.

They were in the ER for four hours, because the doctor wanted to monitor if the steroid was working and to rehydrate T so his low blood pressure could get back to normal.

The hubby texted me this photo of T passed out on the waiting area bed and it made me sad.

This kid can drive us batshit crazy, but we love him – and it’s heartbreaking when he’s unwell.

Although, as any parent of a child with FASD may tell you – or quietly admit to themselves – the peace and quiet is a nice unintended side effect! 😆

I stayed home, because one of our good friends came over for dinner, and the hubby kindly gave us alone time to catch up, even though our friend insisted we reschedule.

It’s nice when we get to catch up with friends – something we often don’t get to do as parents.

The night before, the hubby went out for dinner with colleagues, and I know he enjoyed the break from parenting.

The hubby and T got home from the ER after midnight and the hubby had a late dinner while I put T to bed.

It was a rare late night for me – I’m usually in bed by 9 – and we both quickly passed out and slept like a log.

This incident was scary and it taught us as parents that it’s better to be safe than sorry.

T is on the mend. He sounds like his voice has cracked, so I’m amused thinking this is what he’ll sound like as a teen in a few years.

Wheels in Motion

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

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

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

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

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

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

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

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

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

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

And also mix in books with good messages.

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

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

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

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

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

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

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

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

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

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

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

Scenic dock at Killarney Mountain Lodge

Return to Killarney

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

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

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

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

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

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

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

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

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

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

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

Drenched

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

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

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

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

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

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

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

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

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

And it was a very lovely weekend.

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

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

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

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

Lavender Haze

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

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

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

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

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

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

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

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

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

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

… and the obligatory encounter with a cute dog.

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

… stone buildings …

… lovely old homes …

… cheeky independent book stores …

… walking trails …

… that lead to lovely views of nature.

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

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

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

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

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

A reminder that rushing rivers always lead to calm water.