My Life With T

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.

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.

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.

Embracing His Inner Dennis the Menace

Half a year after we shared his FASD diagnosis with T, it has clicked with him.

On a recent morning, T wanted to play with one of our two cats, which is often a hit or miss event.

T stayed gentle and our cat finally went up to T to smell his hand then let T pet him.

T was thrilled. We praised him for being calm and gentle. Then T said, “I’m never calm and gentle, because my mom drank alcohol when I was a baby.”

That comment blew my mind, because it came out of nowhere.

We had told T about his FASD diagnosis last December and this was the first time he has brought it up with me. The hubby later told me T had brought it up with him a few days prior.

I was thrilled by this, because it’s a huge step in helping T piece together why things in his days happen the way that they do.

I reminded T his mother stopped drinking when she learned she was pregnant, because she would not do anything to harm him.

The hubby and I reminded T that while his disability is a reason for why he behaves the way he does, it’s not an excuse he can fall back on and that we have to work together to turn it into a superpower – and reminded him of the many gains he made by the end of Grade 2.

In the last year, T has embodied Dennis the Menace for better or for worse.

Dennis the Menace is a famous cartoon character created in the 1950s by Hank Ketchum, inspired by his son Dennis.

I remember watching this cartoon – see above – and amused by this boy who was mischievous, driving his parents and neighbours crazy, yet a good soul at his core.

So it was a pleasant surprise when I learned at an adoption workshop, prior to when T entered our lives, that Dennis was inspired by a real life boy who had an invisible disability, likely FASD.

I mused about this connection in a March 2020 post and it continues to be one of my most-read posts; it’s the first result when you search for “FASD Dennis the Menace” as I bet other caregivers are as intrigued by this story as I am.

I often use Dennis the Menace to explain to those unfamiliar with raising a child with FASD, because it succinctly paints a picture of a child who is endlessly energetic, inadvertently getting into mischief, and has a gift of driving his parents up the wall but still endears himself into their hearts.

I’ve never watched the 1993 live action film but my goodness does this kid ever remind me of T.

Like Dennis the Menace, there are many moments when T can be so challenging – like having a full blown meltdown at the park yesterday, because I refused to play with him after he kept speaking quite rudely to me.

But like Dennis the Menace, which my mom has referred to him on occasion as over the years, there is something about T that is inherently lovable that you want to root for him, no matter how much he’s pissing you off.

I remind myself it’s a disability – his behaviours are symptoms of a brain injury – and while it’s not an excuse, it’s a reason to try our best to stay patient and that T is good at his core.

Last Friday night, T and I went for a bike ride after dinner. T stopped his bike and hopped off when he came across a beautiful neighbourhood cat.

They were instantly smitten with each other and I let T enjoy this bonding moment with the cat, while three neighbours watched over them.

“I think you’re gonna need to get him another cat,” one of the neighbors said.

“And I think you’re out of your damn mind,” I wanted to say. But I didn’t. I just smiled and enjoyed this calm and gentle moment.

When Training Wheels Come Off

To kick off summer, T scored his first bloody busted upper lip after a biking accident.

But let’s rewind a week to the morning of the same day T marched in the Pride parade for the first time – when the hubby took him out on his bike.

The bike was a gift from his Ama, my mom, when he was 3. Last summer, he showed a one-day interest in trying to figure it out. Then moved on.

So a year later, it was a big deal when the training wheels came off.

T was reluctant at first, struggling as we all do with balance, but once he overcame his anxiety and figured it out, he quickly enjoyed it!

He even came inside the house looking for me so he could proudly tell me.

Every day since, T’s been going out on his bike, practicing.

We even took it with us to our overnight trip to Elora. Look at him zip here at Elora Quarry. We could not feel more proud.

As parents of a child with FASD, an invisible disability, we serve as his ongoing training wheels.

We’re his external brain to help navigate the world around him – advocating, educating, raising awareness, translating.

Thankfully, these training wheels also exist in community – like community supports, therapists – and in school, they’re the IEPs and most importantly, the Child Youth Workers and teachers.

The goal is to always move T towards independence, when we’re able to take off the wheels, but also understand that wheels may need to go back and stay on in certain contextes.

This is hardest part of the FASD parenting journey – it feel like our wheels are constantly spinning or the rubber is burnt thin but we still gotta keep cycling.

But it’s also incredibly rewarding when we experience the payoffs through T’s eyes.

Despite the ups and downs of the school year – some of which was beyond anyone’s control – T ended off on a high, with many successes, including an A on his report card (for science) and improvements across all subjects including B+ for gym, music and art, subjects he struggled with participating in during previous years.

We are so proud of him and most importantly, he is proud of himself.

And the areas he still needs to improve on – like emotional regulation, collaboration – we’ll keep the training wheels on… and burning rubber. 😆🤣

It’s important to teach T to get back up when he falls, figuratively and literally.

On Monday night, as I was preparing dinner, the hubby texted me to prepare wet paper towels to meet T at the door because he had fallen off his bike and was bleeding a lot.

In T’s words, “It looked like a murder scene!”

It wasn’t quite as harrowing as that, but there was a lot of blood on the pavement and T’s upper lip was busted up.

The hubby said T was hesitant to go back on the bike after his accident but after some gentle encouragement, he got back on like a pro.

And we told him we’re very proud that he did that!

He will continue to have many more falls, figurative and literal, and it’s all about getting back up and learning to avoid those falls in the future.

And to have a sense of humour about things.

T’s lips became quite puffy and I told him he looked like a Kardashian.

He didn’t find the joke as funny as I did.

Tubing Down Elora Gorge

Rushing river leads to calm water. As a parent of a neurodiverse child, I wholeheartedly believe this.

We celebrated Canada Day, and the start of the second half of the year, by tubing down Elora Gorge.

It’s family tradition to kick off summer break with a weekend adventure. This year, we picked Elora, a charming town 90 minutes from Toronto.

Tickets for tubing can be purchased from the Grand River Conservation Area three days in advance.

We showed T videos of other people tubing down the gorge, so he knew what to expect.

We explained that unlike a lazy river, this was a real river and the dangers are real. So he had to wear a helmet and lifejacket and stay seated and connected to one parent at all times.

We woke up early and arrived when the gates opened at 10 am to avoid the crowds – the crowd quadrupled on our way out three hours later.

It was a 15-minute walk from the registration area to the launch site and T was a trooper holding his tube… until he wasn’t. 😆

Once we arrived at the launch point, everyone’s excitement was palatable.

I made sure the hubby and T got in ok first then realized the river doesn’t wait. Oops. Bye hubby and T!

But we were quickly reunited.

We had a blast – the entire journey took about an hour and a half. 😊

Tubing down the gorge was a good reminder that when the current gets rough, resist the instinct to fight against it and to go with the flow.

Rushing river always leads to calm water.

In the stillness, look up…

… and around…

… and enjoy the view.

When the waves pick up again, hang onto each other and ride them out once more.

We are all headed towards the same finish line.

When we get to the inevitable end, take a moment to look back at the journey you experienced.

You’ll notice that what you feel the most are awe, amazement and gratitude.

Love Leads the Way

T marched in his first Pride parade and he did amazing!

I’m part of my work’s Pride staff group and it was wonderful to march with colleagues, family and friends for the first time since the pandemic.

It was important to march, because of increased attacks towards the 2SLGBTQ+ community.

It is horrifying to see the vitriol and hate in the US and Canadians are not naive enough to think that we’re immune to this.

T joining us was a last minute decision. I left the house in the early afternoon to join colleagues to prep our materials.

I felt very iffy about him joining us, because the parade can be overwhelming – with a crowd of over a million, loud music, hot weather, long walking. If T became disregulated, it’d be a nightmare.

On the other hand, I always wished for T to march and to not take for granted our liberties that are now under attack – and to explain to T that celebration and advocacy go hand in hand.

By mid afternoon, the hubby confirmed they were coming and I suggested he show T photos from previous marches and to explain what T would be doing, so he could be best prepared.

They arrived as our group entered the parade.

And you know what, this little guy did amazing.

He kept up with the group, waved his rainbow flag, gave out Mardi Gras beads and made it to the end of the nearly 3 km and 1.5 hour walk.

I chuckled when a group of parade spectators waved T down and wanted him to give them his mini rainbow flag. T gave them a high five instead and went on his merry way.

By the end of the parade, my colleagues and I had to do some cleanup and T became quite hangry.

So I apologized and ditched my peers so we could feed our tired and hungry child.

But it was minor blip in an otherwise perfect day.

When love leads the way, amazing things happen – and I will treasure this day forever.

Helpful Nutrition Tips for Raising Children with FASD

Garbage in, garbage out. How we nourish our body extends to our mind and spirit.

With thanks to our parenting support group, the hubby and I attended a webinar with a nutritionist that works with individuals with FASD.

Our 8.5 year old T is characteristically a picky eater – or as I learned through this webinar, a neurodiverse-appropriate term is “selective eater.”

The nutritionist summarized a few factors that affect eating habits for individuals with FASD – and I bolded the traits we see in T:

Sensory integration with food
Selective eating
Oral – poor swallowing or oral aversion
Fine and gross motor challenges with eating
Eating in excess is called Hyperphagia
Not eating enough
Not finishing meals
Medication can increase or decrease appetite

The nutritionist also reviewed general healthy diet guidelines:

Eat rainbow of colours for fiber, nutrients and antioxidants
Balanced meal of fiber, fat and protein
Focus on whole, unprocessed foods
Avoid additives, preservatives, food dyes, sugar
Blood sugar crashes can be the reason for anger and behaviours
Keep hydrating

Then she provided tips for caregivers:

Keep a food journal
Allow time to finish meals and allow messiness if it helps
Avoid distraction during mealtimes
Have emergency snacks to prevent blood sugar crashes
Include children in meal planning
Explore different ways to prepare food
Eating out
Foods high in omega 3, choline; antioxidant rich foods
Exercise
Emergency snacks

T has come a long way with his nutritional habits.

A few months ago, out of the blue, he decided he wanted to eat oatmeal for breakfast, which we pair with yogurt then his multivitamins.

This is a huge win as it replaced his sugary cereal.

Lunch and dinner can still be a struggle. We often cycle through the same 3-4 starch rich meals – but we try not to stress about it. If he wants pancakes for dinner, pancakes it is.

Fruit is a staple but veggies are avoided – even cussed at. 🤣

Multivitamins have been helpful and we’ve been giving him “Smarty Pants” gummies, which have choline, for a few years now – along with a separate Vitamin D gummy.

Meat is a challenge, but he gets protein through yogurt, milk and cheese – and McDonald’s chicken nuggets and hamburgers and Taco Bell if you consider that meat! 🤣

T recently ate not one, but two of these meaty beauties, in one sitting.

Recently, T wanted to try BBQ burgers and ate two meaty prime rib burgers from the supermarket – PC brand is the best. This was a huge win.

As the person who does the groceries, I’ve cut out sugary snacks, like Oreos, as well as juice, weaning T off them slowly, and that’s a win.

We recently took away the tablet during mealtimes so T can focus on his meal – and heaven forbid, socialize with us too. 😆

Perhaps an important ingredient is doing our best to role model healthy eating habits.

The hubby and I have been transparent with T about our health journey – and we openly celebrate the incremental wins together.

Since starting his diet in January, the hubby has reached 50% of his weight loss goal – and T tells the hubby he’s sad he won’t be able to cuddle with him when he’s not fat anymore. 🤣

I also have ongoing conversations with T about the importance of exercise – and why gym is part of my ongoing routine.

Slowly but surely, T will get where he needs to be.

As T’s fortune cookie from our recent Fathers Day lunch at Asian Legend – pictured at top – said: “You will make many changes before settling down happily.”

Yummy bowl of fish maw soup from our Fathers Day lunch at Asian Legend. One of the few unique food items T will actually eat.

Padam Padam

Life begins at 40 – and what makes your heart beat with new purpose?

Growing up, 40 seemed ancient and yet, I still feel like a kid in a candy store when I view and think about certain things in life.

Being a dad keeps my mind young and ages my body in triple time.

There are benefits about being older… I mean, wiser – because you take each step with your cumulative life experience and lessons.

I’m more decisive and don’t agonize over every detail as much as I used to.

Exercising a good work ethic is still important – and I expect it from others – but I focus now on working smarter, not harder.

I appreciate the opportunities to give back – despite my very limited time – including enjoying coaching others.

Work life balance is a top priority. If it’s one thing the pandemic years has reinforced, it’s to enjoy life and each other while we still can.

For the most part, I’m enjoying my 40s. It isn’t without challenges – like raising a child with an invisible disability.

When I think about the next phase of life, I am more excited than daunted about what lies ahead.

I hope I never stop wanting to grow and challenge myself – because I feel the best years are still ahead.

I look at one of my muses, Kylie Minogue, who in her mid 50s is having a charts resurgence with her infectiously joyous new song, Padam Padam.

I find the narrative around her perceived comeback interesting – as if artists (and women) of a certain age should just lie down and die.

I find the middle stage of life fascinating, because we can take everything we’ve spent years honing and put it to creatively good use with more precision, decisiveness and confidence.

But I also keep it real. Life these days is centered around T – all my free time is consumed by T.

Most days, I feel deep gratitude for this; some days, I desperately want a break.

But on this Fathers Day weekend, I look at our little kid and think to myself how lucky did we get when the universe matched the hubby and I with him as his parents.

What makes your heart beat and go Padam Padam?

Flowers

On a beautiful Spring Sunday afternoon, T brought flowers for his Auntie.

A few weeks prior, the memorial garden staff let me know her memorial plaque had been installed and with it, a vase for flowers.

At 8.5 years old, T has experienced a lot of adversity and loss the past year.

When I watched him sit on the grass next to the grave, looking at her plaque, I thought back to three years ago, when T first asked me about death.

I didn’t know how to answer it at the time and little did I know that T would get a first-hand experience in the near future.

Re-reading this post, I would still approach it the same way: with healthy openness and honesty.

Despite living with FASD, T is insightful and perceptive and, at his core, very caring; he can handle the truth in age appropriate doses.

Over the past while, when he wanted to role play a funeral, we would do so; when he wanted to talk about his Auntie as an angel sitting on a cloud, I’d listen.

We try to convey the message that death is a part of life and that’s why we have to enjoy life and appreciate each other while we can.

We let T know, a while back, the hubby and I have a plot in the same memorial garden.

We bought it a decade ago, after my dad passed. With our wills also done, it gives us peace of mind that we have things planned for T.

We also make it clear to him that we don’t want to move in anytime soon, but that it’s good to be prepared as parents.

After we visited my sister, we headed over to our plot on the other side of the garden.

I noticed during this visit that our future neighbour was born in 1883 and passed away 70 years ago!

“I’m going to be with you too,” T said.

“Oh no, this is for Daddy and I,” I said.

Then T got upset and said we were being rude.

I clarified that when he becomes a grownup one day, he will probably have his own family and may want to be with them instead of us.

“Well, they can all go in with us!” He said.

Sprint to the Finish

Friday was Track and Field Day. T crushed and won his races, including the 1500m and 800m.

Earlier in the week, on Tuesday, the hubby, T and I participated in the final session of the SNAP program, which we participated in to build skills to make better choices and co-regulate with T when moments get tough.

While the program added to our full schedules, we are thankful for the 13-week journey together.

We learned and relearned great tips and the tools are making a difference – such as the sticker chart we’re using to help T get through routines he struggles with, like getting ready for school.

Parents often roll their eyes at sticker charts. But it’s working for us. If it takes rewarding T with up to $5 a week to get through routines, it’s a steal!

It’s not about perfection for us but rather, it’s about focusing on steady progress forward.

The SNAP staff have been wonderful – and so have the other families – and the wrap up party was a nice way to celebrate us making it to the end.

There were cupcakes, chips, completion certificates, speeches and a visit from SNAP the Dragon.

Each child got a gift bag that included a stuffed SNAP the Dragon.

As the weather gets warmer, I’m feeling astounded the school year is nearing its end.

It’s been a year of ups and downs but I’m hopeful we will have a strong finish.

We’re so thankful for the supports we’ve had, including his CYW who has made such a difference and helped T made so many gains.

The excitement for Track and Field Day was palatable.

In the days leading up to Friday, and the morning of when I did school drop off, we reminded T it’s important that he tries his best and to have fun.

We reminded him to pace himself in the runs – to not burn out in the beginning, to take a steady pace, and then charge to the finish.

Trying hurdles for the first time. Reminded me of when I tried hurdles for the first time, also in Grade 2.

His CYW texted us excited photo and video updates throughout the day.

It was heart-filling to see T give every activity a good try, from shotput to hurdles and long jump.

He exceeded expectations when he won all his races, including the 800m and 1500m runs.

My heart felt warm hearing his CYW proudly cheering him on as he neared each finish line.

I could see the look of pride on T’s face as he made it to the end.

Life is often a series of starts, restarts, and endings – and with each end, a new beginning.

On this day, it was about strong finishes – a reminder of the many gifts this awesome boy has. I hope he sees and feels it too – and I hope others in his school do as well.

I hope T soaks in this positive energy and confidence boost – and that they springboard him to wonderful new beginnings.