Visits to the Hospital

Parents want to protect children from hard realities of life but these moments can provide valuable lessons.

T has faced a lot of heartbreak for a 9 year old, including Ma’s death this year and my sister’s death the prior year; the latter lived with us in the last few months of her battle with cancer.

He’s also learning to process his diagnosis of FASD, something we shared in late 2022.

Most recently, my Aunt – my late Ma’s sister – had a fall and had to be hospitalized as it resulted in a small fracture in her spine and she needed emergency surgery or risk paralysis.

We delayed our recent visit to T’s grandparents in the East Coast by a day, so we could visit her and be in town for the surgery.

When we told T, he cried for quite a bit as he thought that she would be the next to die.

We reassured T it was a straightforward procedure with high success rate and that he could see for himself that she is ok.

She was admitted to a hospital in downtown Toronto.

We parked a few blocks away from the hospital and when we got out of the car, T noticed a store sign and shouted, “Vape shop!”

To think there was a time when I worried this child would never learn how to read. 😆

The hospital was located in a grittier part of the city, where there was a homeless shelter and many precariously-housed people in a park along the walk to the hospital.

While I kept a close eye on T, I didn’t feel unsafe. I feel it’s important for T to be aware of all walks of life, especially when he is aware of his birth mother’s life circumstances; and to be respectful and empathetic to all.

T gave my aunt a handmade card he drew.

He’s obsessed with the Titanic and has drawn countless images of the same pivotal moment when the ship splits in two.

A part of me chuckled that this was not the most appropriate image to give to a person who needs surgery for a fracture on her spine.

But as with everything with T, context matters.

The card and the message inside came from his pure and beautiful heart.

He held her hands several times and I know it provided her with comfort as much as it provided him with reassurance she’ll be ok.

We visited my Aunt twice when we got back, most recently on Friday night after work.

She was moved to a rehab centre closer to our home and looked so much better!

She is continuing to wear a neck brace for the next month as she undergoes physiotherapy.

This picture of our cat Kyrie with a cone gives you an idea of my aunt’s current condition!

I’m thankful things are on the mend and this experience was an important lesson for T about resilience and keeping the faith.

The Tumbles and Polish of Sea Glass

Picking up treasures on pebbled shores reflected the journey through life’s imperfections.

One highlight from our visit to T’s grandparents in New Brunswick was picking sea glass.

Wonderopolis describes sea glass as pieces of glass smoothed over time by the tumbling of water, waves, and sand.

As glass soak in salt water and get tossed against sand, sometimes over 50-100 years, sharp edges become smooth and glass take on a frosted look.

The glass originates from broken bottles, jars, dishes.

The photo below shows the contrast between sea glass and regular glass.

T spent time every day searching the beach by his grandparents’ cottage for sea glass.

I joined him for some of these walks as I enjoyed the soothing salt water air.

There were sporadic sea glass to be found.

One morning, we drove an hour away to Grande-Anse, a scenic town we visit every summer.

Some homes are right by the edge of the cliff overlooking the bay and look so tranquil!

There is a small pebbled beach next to a wharf where sea glass are always plentiful!

Each armed with an empty margarine container, we spent nearly two hours quietly searching.

It was good exercise for our knees and lower back!

Three generations of guys picking sea glass!

T really got into sea glass this year and did great!

Green, white and brown are the most common.

Blue is rare and red, orange, yellow and purple even more rare.

I found a beautiful lavender glass, which T took credit for when he showed his grandparents! 😆💕

We then enjoyed lunch at a side-of-the-road canteen, while T patiently sorted glass by colours.

For a kid with ADHD, he was super focused!

I focused on my cheeseburger and poutine. 😆

T noticed some blueish-white glass, which he put in the blue bucket. Just beautiful.

T’s Grammy bought a glass jar from the dollar store to display our collective treasure and gifted it to T.

The parallel between sea glass and FASD is not lost on me: shattered bottles, perhaps beer and wine, refined into sea gems as they’re also called.

A part of T’s life will be forever impacted because of prenatal alcohol exposure.

But his sharp edges can be smoothed with support, awareness and understanding.

Challenges that seem rough at the moment look and feel different in hindsight.

Just like sea glass can’t be rushed, life itself can’t be rushed.

Life is experienced.

This treasured jar will sit on the bookshelf in our family room. We hope to add to it over the years and for T to pass this tradition onto his children.

Swimming at Nigadoo Falls: An Off the Beaten Path Oasis in New Brunswick

Often times, the best activities are those known to the locals.

At the top of T’s list to do during our annual summer visit to his grandparents in Beresford was to swim at Nigadoo Falls.

It’s a beautiful, rocky and fresh water spot tucked in the woods, off the unassuming Rue du Moulin in Nigadoo, the town next to Beresford.

We parked our car at the side of the road and hiked a short 1 km trail.

There was a very steep and narrow downhill hike as we neared the falls.

Then the beautiful oasis revealed itself.

We first visited in 2021 and the view still takes my breath away.

The water was so refreshing and clean.

T, his cousin A, the hubby and I and had a blast swimming, while T’s grandad watched us from the rocks.

There are very deep parts within water where locals jumped off the rocks into the water – such as the brave individual pictured below from 2021.

I can verify the water gets very deep, because my ears popped when I swam to the bottom to fish out goggles that T had dropped. 😆

T has come a long way with his swimming skills.

This was the first summer we let him swim without a lifejacket, so he could explore the deep water.

I thought back with amusement to our first visit in 2021 when mischievous youth emptied a bottle of detergent at the top of the falls and created an impromptu foam party.

After our swim, we hung out by the rocks and enjoyed snacks, including Pringles for T.

A beautiful monarch butterfly hung out with us.

When we got home, we enjoyed a delicious pasta salad T’s Grammy prepared and I made air fried chicken thighs to go with them.

Wild Blueberries

We’re letting T run wild this summer, taking a more relaxed approach than previous years.

Usually by the end of June, I would’ve lined up worksheets and books from his teacher, to work on with T over the summer.

I did this to avoid summer learning slide, as I’m mindful of T’s FASD and ADHD.

Maybe I want to minimize our stress or I recognize that childhood summers are short, but we threw caution to the wind this summer.

And it’s been one of our best summers with T.

Every summer, we spend the first two weeks of August visiting T’s grandparents at their cottage in Beresford, an Acadian town in New Brunswick.

This year has been a mostly relaxing visit – although T’s increased swearing is not impressing anybody.

We were joined by the hubby’s sister and A, T’s cousin whom he adores.

One late afternoon, T’s grandad took the hubby, two kids and I to pick wild blueberries in the woods; not a farm, but a wooded area off a dirt road.

At a first glance, it looked unassuming but as we walked into the trail – past moose tracks! – the treasure appeared, free for the taking.

Bushes upon bushes of blueberries in the wild.

Now I understood why our niece told us to keep this place top secret.

We spent 90 minutes quietly picking berries.

T worked with his cousin to fill their margarine container.

He was so focused. I bet he enjoyed the sensation of plucking berries off the stems.

It was hot and humid but we all wore long sleeves and pants to avoid being bit by insects.

I was doing well until I accidentally dropped my container! 😔

I salvaged as much as I could and managed to get half a container at the end.

Check out the group’s total haul below.

Imagine what stores would charge for this. We were blessed to have picked these in the wild.

The next day, my mother in law and the hubby spent hours cleaning the blueberries.

It was quite the effort!

That evening, my mother in law made a delicious no-bake blueberry cream cheese pie. 😋

According to farmers, wild blueberries have twice the antioxidants of cultivated blueberries, because they adapted to harsher climate.

When I think about this summer, I see the benefits of letting go of the need to cultivate control and to let T be wilder.

To be clear, I’m not saying throw rules and structure out the window.

It’s about recognizing childhood is short.

Something valuable is gained when we let kids have fun freely – be it a deeper bond with grandparents, warm memories that’ll carry them through hard times, or feeling rested so they’re ready to tackle a new school year.

This is harder to do as a special needs parent, when you are always on guard and feel like you’re always playing catchup or needing to be a step ahead of the next challenge.

By letting go of the need to control everything, we’re letting our kids grow in the wild and soak in all that life has to offer.

In the end, they become stronger and hardier for all that lies ahead of them.

Playing at the bay by his grandparents’ cottage with one of the neighbour’s dogs.

Hiking Takakkaw Falls and Canoeing Emerald Lake at Yoho National Park

We saved some of the best experiences for last during our family summer trip to Banff, Alberta.

I intentionally kept our last day as a blank slate when planning the itinerary.

At the advice of a local, we spent the day exploring Yoho National Park, located an hour drive from the town of Banff.

Our first stop was Takkakaw Falls. At 373 m, it is the second tallest waterfall in Canada.

The uphill drive through the woods was calming and we were blessed with beautiful weather.

From the parking lot, it was a 30-minute and 1.5 km hike to the falls on a flat well-maintained trail.

We stopped at scenic lookouts and I still laugh at our fearless pest, photobombing his Daddy by not-so-safely crawling across the front of this bridge above the rushing river.

It was cooler as we neared the Falls and its refreshing mist.

What a beauty.

Our next stop was the stunning blue-green Emerald Lake, a 30-minute drive from the falls.

The bonus was that we got to canoe, an activity we lamented not doing at Moraine Lake.

The canoe rental shop was also cheaper compared to the more well-known Moraine Lake.

As we were lining up at the canoe rental place, I struck up a conversation with a couple from Florida, pictured above.

The wife had asked if we had adopted T as one of her sons was gay and looking to start a family.

She shared that two of her sons were adopted and from what she shared, I wouldn’t be surprised if they also had FASD or a similar diagnosis.

The conversation reminded me my family is part of a larger community. We’re not alone in this.

We had the canoe for an hour and it was enough time to circle the breathtaking lake.

It felt so amazing being surrounded by blue-green water and dwarfed by snow-capped mountains.

But wait, there’s more!

On our way out of Emerald Lake, we stopped by the Natural Bridge, a natural rock formation that spans the Kicking Horse River.

We let T explore as we enjoyed the calming sound of the water and the refreshing breeze.

I love this photo below of T standing on the solid bridge looking out to the rushing river as it’s a symbol of grit against life’s turbulence.

T spotted many dogs during our trip. Most owners let T play with their dogs.

This photo below with this beautiful husky was my favourite from our trip.

After a busy day, we relaxed at our hotel and took a short late afternoon nap.

For our final night, the hubby and I treated ourselves to a steak dinner, as Alberta is reputed for its superb beef.

The steak dinner and the sides of grilled mushrooms and truffle Mac and Cheese were yum.

We enjoyed one final sunset walk along Banff Avenue, feeling grateful for our time here.

When we got back to the hotel, I noticed this lovely note below that T had written, unprompted, for the staff while the hubby and I were napping.

Yes, we had annoying and disregulated moments during our trip with T, but as this note reminded me, he is a pure and kind child at his core.

A positive way to end our final evening in Banff.

Explore our Banff Trip

The Quiet Beauty of Banff’s Lake Louise and Moraine Lake

Turquoise and emerald water, majestic snow-capped mountains and carpet of evergreens. A trip to Banff’s must-see lakes did not disappoint and there was an unexpected bear sighting too!

Our visit to both lakes on the fifth day of our week-long trip worked to our advantage, as the weather was great.

As we learned through our preparation, it’s best to take public transit to Lake Louise – an hour-drive from the town of Banff – as it saves on cost and avoids the stress of finding parking, as the lot fills up as early as 5 am during peak season.

The views and the experience did not disappoint.

We spent an hour exploring the lake at ground level.

We could have easily spent a day there, as there are numerous hiking trails, canoe rentals and also the Fairmont Hotel to explore, but we felt more than satisfied with our visit.

The breathtaking views will be tattooed in my memory for a long while.

Just to keep it real, the crowds were packed, see below, so don’t let my serene photos make you think otherwise. 😆

We then headed to Moraine Lake, a 30 minute drive from Lake Louise.

It is only accessible by transit or private shuttle during summer months due to how busy it is.

Gazing at the other-worldly emerald lake, it’s easy to see why thousands of people visit each day.

There were people canoeing in the glacial lake and we wished we had time to do so during our hour-long stay.

Our budding parkour artist enjoyed climbing and exploring the rocky terrain, with that thick carpet of trees in the background.

The views were spectacular and the fresh air was refreshing. I miss it already.

On our way back to town, we spotted a bear!

It was on the other side of a highway fence, so we were able to safely watch it from afar on the side of the road, along with other awe-struck tourists.

It was a beary lovely way to end the afternoon!

Explore our Banff Trip

Cycling the Legacy Trail and to Johnston Canyon in Banff

A 25 km bike ride in Western Canada provided an unforgettable scenic experience for my family.

On the fourth day of our week-long visit to Banff in Alberta, I planned a full-day outing around T’s love for biking; it was just last summer that our 9-year-old took off his training wheels.

There are numerous bike rental shops in town and we rented ours from Banff Cycle and Sports.

There are more than 190 km of biking trails in Banff – some trails are within town, some take you out far out, and all are scenic and lovely.

Based on recommendations, we decided to cycle the 25 km to Johnston Falls, which includes part of the Legacy Trail, along the way.

Boy, it did not disappoint with the breathtaking views all along the way!

The trail was well paved and maintained and most of the trail was exclusive to cyclists.

In addition to the scenery, we also spotted wildlife, including moose and deer!

The hubby catching up after pausing to look at a moose spotted along our ride!

We took short breaks to hydrate and take in the gorgeous lookouts.

Funnily, of all the photo breaks, this under bridge below was the one T got most excited about!

The hubby and I are not avid cyclists – nor do we have T’s energy – so we underestimated how hard 25 km would be, especially when you factored in the heat, sun and the many hills!

By the time we got to this Welcome point below, we still had 17 km to go! Our legs were starting to feel sore – and we still had to bike back after! – but T kept wanting to go and explore.

We are thankful we went against our better judgment, because the journey did not disappoint.

Look at these magnificent views.

Look at our T go – responsibly and safely sharing the road with cars and motorcyclists.

The last 5 km were trying. Our legs were jello and we walked the bikes up the hills.

When we arrived at Johnston Canyon, we were ecstatic to learn the local bus had a stop there that took people back to town and also had a bike rack. Crisis averted! 😂

So we rewarded ourselves with lunch at the local cafe then explored the beautiful canyon.

When I look back at this trip one day, this bike excursion will be one of the highlights.

I will remember how T kept us going through the ups and downs and exhaustion, much like how he is the reason I plow through life’s ups and downs.

I will treasure the sweaty contentment on his face throughout the bike ride and his enthusiasm as he cycled through this heavenly trail.

I will remember how he curled up on his seat on the bus ride home, passed out from exhaustion, then adjusted himself so his head rested on my lap.

When we got home to our hotel, I noticed T was clingy to me and being extra helpful.

When I said I was taking a shower, he turned on the water for me. Then he brought the toiletries. Then he said he tidied up my bed.

This was his way of saying thanks.

A week later, when we were a few days home from the trip, I asked T what his favourite moment at Banff was.

I expected him to say it was the bike trip.

He said, “Spending time with you.”

Explore our Banff trip

Family Summer Visit to Beautiful Banff in Alberta

We kicked off T’s summer with a week-long visit to Banff, a town within Banff National Park in Alberta.

Our Canada Day departure got off to a slow start with a 2-hour mechanical delay, while we were already seated on the plane.

“Is the plane going to crash?” T asked loudly and I reminded him to use his inside voice.

The 4-hour flight was uneventful and T was mostly regulated with a few restless moments.

The 1-hour drive from the Calgary airport to Banff was incredible once the tall snow-capped Rocky Mountains appeared.

We took it easy on our first afternoon and explored downtown Banff and watched their Canada Day parade.

As we had been up since 3:30 am our time – Banff was 2-hours behind Toronto – we went to bed early after letting T swim at the hotel pool.

Waking up refreshed on our first full day, we set off on our first hike, after breakfast, up nearby Tunnel Mountain.

It was non-stop zig-zagging incline trails – and the hubby and I were cursing ourselves – but T was ever the trooper, often leading the way.

The scenic views of pointed snow-capped mountains and clear turquoise waters below revealed themselves, layer by layer, as we made our way up Tunnel Mountain.

We eventually made our way to the top, an elevation of 1,690 m and at a summit once made by King George VI and Queen Elizabeth in 1939.

The burning thighs were worth it for the panoramic views.

T enjoyed the views too, wanting to document it amongst his photo memories.

T is at an age now, 9, where we can be less on top of him during hikes at more precarious places.

But he sometimes reminds us to keep a watchful eye on him.

An amused visitor from England said to us at the summit, “Looks like you have a monkey.”

Can you spot T on the tree below? Bet the view below was even more awesome from the treetop!

This kid has no fear!

We retraced our steps back down Tunnel Mountain and enjoyed the scenic lookouts once again.

We then headed off for afternoon tea at the Banff Springs Fairmont Hotel, something I planned for the hubby’s enjoyment as he loves this stuff.

The view was not too shabby!

I’m not normally into tea parties but these scones with cream and jam were delicious!

Afterwards, we explored the scenic grounds of this beautiful hotel, which opened in 1888 and hosted famous guests such as Marilyn Monroe.

The hotel connected to Bow River and we hiked along the trail, which lead to scenic Bow Falls.

If there’s a pebble or stone to be thrown, T will find it and throw it.

We headed back to our hotel in the late afternoon to relax then headed back out for dinner along Banff Avenue and enjoyed its scenic backdrop.

Banff is a place I’ve wanted to visit for a long time, pre-dating parenthood, and I am thankful we had this opportunity and to experience it with T and through his wonder-filled eyes.

It has been a challenging last few years for our family, filled with successive hard losses.

Taking the plunge with this family trip was a reminder to embrace the urgency of the now.

Explore our Banff Trip

Born This Way

We kicked off T’s summer by marching in Canada’s largest Pride parade and championed freedom to information.

I have a leadership role on my work’s Pride employee group and was part of the team that organized our march.

For the second year, we chose the theme of intellectual freedom and reused signs from last year, a mix of slogans such as “Freedom to Read ‘Em” and of book titles frequently challenged for featuring 2SLGBTQ+ content.

I carried the sign featuring “And Tango Makes Three” (below), one of my favourite picture books I read to T at bedtime, which tells the true story of two male penguins that raised a baby penguin.

With anti-2SLGBTQ+ sentiment rising around the world, and libraries facing increased intellectual freedom challenges, it is more important than ever to speak up against hate and intolerance.

If you don’t want to read books featuring gay people, don’t read them. If you don’t want to watch a drag queen lead a storytime, don’t join in. But don’t tell others what they can read and enjoy.

As our group neared the entry point of the parade, a woman stood in the middle of the street and started screaming semi-incoherently for us to repent or we would go to hell.

We ignored her and carried on with our message of love, respect and tolerance.

That really is the best way to respond.

The hubby is draped in the rainbow flag and T is wearing his cute new tilly hat.

T marched with us last Pride and he asked to march with us again.

I told the hubby to meet my colleagues and I close to the start of our entry into the parade, to lessen T’s wait in the loud crowded muster area and minimize chances for disregulation.

Aside from a few cranky impatient moments, T did great – and my heart is full.

One of my colleagues noted he was more outgoing this year.

My heart swelled watching him hand beads and our stickers – with messaging such as “Be Open,” “Be Curious,” “Be Brave,” – to kids and older adults sitting on camping chairs.

Our dog lover zeroed in on a few adorable pups along the way.

He shoved his way through a crowd to grab a photo with our mayor, Olivia Chow; also the wife of the late great Canadian NDP leader Jack Layton.

I am so proud of this kid.

He drives me crazy on a daily basis and his FASD makes some days hard. But on days like the Pride parade, his true self shines brightly.

As I was waiting in the chaotic crowded muster area with a few colleagues before we entered the parade, T came to hug me. It was his way of regulating himself.

Lady Gaga’s iconic “Born This Way” came on a nearby marcher’s portable speakers and the words resonated deeply at that moment.

“I’m beautiful in my own way

‘Cause God makes no mistakes

I’m on the right track baby

I was born this way.

Don’t hide yourself in regret

Just love yourself and you’re set

I’m on the right track baby

I was born this way.”

I always felt that a higher force brought T into the hubby and my lives and it likely would not have happened without T being born with FASD.

Life worked out in this way – and we’re on the right track baby, he was born this way.

The Glee cover of “Born This Way” is exceptional.

Goal Posts

Grade 3 is in the history books and we’re kicking summer off with soccer.

T has recently developed a love for soccer.

Thanks to his CYW, he had his own soccer ball and played soccer at recess with a group of boys.

There were bumps along the way, as T gets upset when he doesn’t get his way, but it was a good opportunity to learn about teamwork.

As a year-end gift, his CYW gave him his own jersey and shorts, inspired by popular Argentinian soccer player, Lionel Messi.

I may be biased, but T looks like a star in it.

He walks with extra swagger in it. 🥰

Like a World Cup finals match, the past school year has been filled with nail-biting moments.

But T finished strong like a champ!

We received his report card on Thursday and T got 3 As – one of which was for math! 🥰

It made all those meltdowns prepping for math tests worth it – and the hubby and I told him how damn proud we are of him. 💕

His teacher wrote thoughtful detailed feedback, which included:

“T has had a great ending to his Grade Three year. T is a caring, bright and helpful member of our classroom community. T has had some success in maintaining the self-control necessary to actively attend class, participate in activities and complete his work this term.”

We appreciated her feedback about where he needs work, but we’re putting all that aside for now.

Because we’ve reached this latest goal post: summer. For now, we rest, recharge, build fun memories outside the school grind.

The past work week felt long, because I had early and late days. I logged off early on Friday to pick T up from school on his last day.

Instead of going on the bus to daycare, I gave T an early start to summer.

It was heartfilling watching the teachers escort the kids out of the school to their waiting parents and the kids hugging their teachers.

As T walked out, he didn’t look happy nor excited.

“I want to go find Jimmy,” he said. He went right back inside the school and one of his teachers kindly allowed me to follow him.

We made our way to the front, where T found Jimmy, who he played soccer with during recess.

T gave him a hug and the two played for 30 minutes while Jimmy waited for his bus and I caught up with T’s junior kindergarten teacher who was supervising the group.

I loved watching T play with his friend, because it’s something I never see, only hear about at home.

When the bus came, I could see the anxiety in T’s eyes. He gave his friend a hug and watched him go on the bus.

As he waved to the departing bus, the tears streamed down his eyes and when he got into our car, he cried and said he’s going to miss Jimmy.

It was a bittersweet moment as a parent, because on one hand, I don’t like to see my child sad but on the other, it was sweet to see T experience the spectrum of emotions that come with friendship.

I took T to McDonald’s for ice cream, because if anything can help soothe the blues, it’s ice cream.

This morning, we got up and T asked me to kick his soccer ball around the living room with him.

This kid is pretty darn good, I have to say.

He got testy when I gave him a hard time with scoring a goal.

“I’m not just going to let you win,” I told him.

“Why not?”

“You want to play with people that are better than you, because that’s how you’re going to learn and that’s how you’re going to get better.”

My words flew over his head. But I like to think it’ll sink in one day for him.

It reinforced to me one of the things I’m grateful for in this FASD parenting journey. It kicks my ass most days, but it teaches and helps me to be better.

Going Off the Deep End

T loses control of his emotions on a regular basis, but today, it was for the best and proudest reasons.

The outdoor city pool opened this weekend and it’s a summer tradition for us to spend time there.

It’s a small plain pool but it is special place for us, because it saved our pandemic summer in 2020, when there was not much to do. We were there 4-5 days a week.

Four summers later, while we don’t go as often, we check it out every weekend.

T started swim lessons two years ago and it is an activity that he enjoys and that he can focus on.

Last September, T attempted the deep end test for the first time and he failed. It wasn’t even close.

I told him to not be discouraged. It means he needs to practice more, keep at it and try again.

T at the pool in the pandemic summer of 2020.

Nine months later, it was his shot at redemption.

T said he wanted to practice first and he swam two laps effortlessly.

I told him he did great. But he wanted to practice one more time – and did it again.

“Ok, I’m ready,” he said. “Can you tell the lifeguard?”

I told him that it was his test, so he had to call for the lifeguard. And so he did.

A group of older kids gathered in the middle of the pool and I was worried T would get intimidated.

But he began his test.

Lap 1 done without a sweat.

As he swam back, an older kid moved, unintentionally, in his way and T bumped into him.

I worried it would throw him off. But he kept on swimming and made it to back to the lifeguard.

“Did I pass?” He asked.

“You sure did,” the lifeguard replied.

T and I both screamed so loudly and jumped up and down then gave each other a big hug.

As the lifeguard put a sticker on T’s wristband, to indicate he passed, I apologized, “Sorry, I’m just an over proud parent.” 😂

“It’s all good,” the lifeguard said with a smirk.

How quickly these summers and time fly by.

“Are you ready?” I asked T.

I could see the excitement in his eyes as we swam towards the blue rope.

After all these years, he could finally venture to the other side.

As we entered the deep end, Bee Gees’ “Staying Alive” came on the stereo. How appropriate. 😂

There were less people in the deep end and I watched with absolute glee in my heart as T had such a blast exploring this new part of the pool and swam to the deepest part, which must’ve seemed massive to a small kid.

It’s tradition to take T to McDonald’s after our swim and to celebrate his accomplishment, I also picked up dinner there for the hubby and I.

As we drove home, T asked, “Are you proud of me?”

I smiled at him from the rear view mirror and said, “I am so so proud.”

Using Medication for a Child with FASD

The cereal box T created for his media literacy class is called “Growing Stronger.”

I like that they teach Grade 3 students media literary, as well as nutrition, in a hands on way.

Just as diet influences health of kids with fetal alcohol spectrum disorder, our parenting journey has demonstrated that medication can be an effective part of our toolkit to help our son.

It was four summers ago, when T was 5, that we started T on methylphenidate to help with his ADHD symptoms.

As with any medication, one’s tolerance changes over time and we’ve made adjustments, one to two times a year, in close consultation with his developmental pediatrician.

In the last four years, we’ve also tried Biphentin and Guanfacine in different doses and combinations.

Most recently, we added Citolapram, an SSRI drug commonly used to treat depression, to help with T’s mood, and it has greatly helped with his anger, irritability and anxiety.

This is on top of Adderall and Guanfacine, now a total of three daily medications.

If you’re reading and thinking, “Oh my God!” Yes, it is so very heavy.

The hubby has always been all-in with medication and always the first to say, “We need to talk to the doctor about adjusting his meds.”

I was very hesitant to start T on medication, because I worry about adverse side effects and the stigma that comes with it.

The decision to start your neurodiverse child on medication is a very personal one and there are several things a caregiver should consider:

  • Always consult with a pediatrician, ideally one with expertise on your child’s diagnosis. They can consult with other resources, such as the FASD medication algorithm (think of it like a decision tree), which was helpful with our recent change.
  • Monitor and adjust, because your child’s symptoms may change over time and their tolerance to the type of medication and/or dosage will change as they grow.
  • Have an open conversation with your child about why they are taking the medication.
  • Plan for a transition period to start medication or change. We start T on any new med or change on weekends or an extended break, like summer, in a calmer environment in case there are any transition effects.
  • Be transparent with your child’s community, including family, school and child care staff.
  • You are the expert on your child and will make the best decision for them based on the information you have. Be informed. Read up. Ask questions. Ask for second, third, fourth… opinions, until you feel best informed.

Four years in, despite my initial hesitation, I think starting T on medication has been a good decision for him and our family.

We see more benefits than added challenges – and we feel it on those rare and comically disregulated days when we forget to give him his meds.

But it’s not a magic bullet. It’s doesn’t fix everything.

To me, medication is a part of a larger toolkit to help improve outcomes. Other tools include advocacy, accommodations, therapy services and most importantly, fundamentally adjusting your approach to and expectations of parenting.

The FASD parenting journey is hard, but being T’s Papa is the most rewarding job in the world.

You can say that thanks to my child, I, too, am growing stronger each day.

Check out the fat content! 😂😭

Boomerang

On special days when stars align, the energy we send out come flying back at us.

T recently completed the EQAO standardized Grade 3 test earlier this month.

T’s school was so supportive. He had his CYW’s support to complete the test, as he gets distracted on the computer.

On the first day of the test, T’s CYW sent the hubby and I a lovely text message.

T had to write a short passage on a topic of his choice and his CYW said “T wrote the most beautiful thank you letter in his EQAO test.

“He thanked his parents for taking such good care of him. Thankful for having two of the best parents who love no matter what. Thankful for all the trips he got to go on. Thankful for his swimming lessons. Thankful that his parents love him very much. He concluded by saying that he has the best parents. Omg, I thought I was going to cry.”

It was gratifying to hear this, because parents also need positive reinforcement.

Raising a child is hard, even more so with a disability added on.

During T’s disregulated moments, he can say very rude and hurtful things. No matter how thick my armour has become, his words sting.

I’ve learned through the years to not take things personally and to separate the FASD disability from who T is at his core: a deeply caring loving boy.

On Fathers Day, T made us a beautiful homemade card, the front is pictured at the top.

The message inside – I’m sure it was transcribed by his CYW because there’s no way his writing is that neat! – was so heartfelt:

“I am thankful for my dads, they take good care of me. They bring me to lots of other places, which I’m thankful for. I’m thankful for all the memories and pictures that I got with my dad and papa. I am thankful for going bike riding with my dads and sometimes we go to a Tim Hortons to get drinks. I’m even thankful for going swimming my parents. Love, T.”

We had a relaxing Fathers Day.

T accompanied me to do groceries in the morning then I took the hubby and him for buffet lunch at Dragon Legend.

We then visited my Pa, Ma and sister at the cemetery. They finally put up the new memorial plaque with both my parents info and it felt bittersweet to see this completed and feel final.

It was a beautiful day and the hubby watched T play in the pond at the cemetery where he scooped up four tadpoles and put them back after.

I stood in the shade under my favourite willow tree on the cemetery grounds and soaked in the calm.

On many days when parenting is hard, it feels thankless and one sided.

But on days when our energy and love for T come back like a boomerang, it feels absolutely awesome.

Then the hubby took T to the movies and I took a glorious three hour afternoon nap. 😊

But Is It Art?

After years of being on the receiving end of mischief, our cat got back at her 9-year-old nemesis.

“OH MY GOD!” T screamed Friday morning.

It was a PA Day and he stayed home instead of going to daycare, as we were going to a FASD caregiver group meetup at lunch.

“What is it?” I asked as I saw T in our living room.

“Lanaya pooped on my art work!” He shrieked.

Lanaya is our female cat, who was once the centre of the universe until T came along.

T’s hyperactivity, loud boisterous nature and disregulated moments are hard on our poor cat, who has over the years withdrew and spends time under the bed when T is home and awake.

T wants to be friends, but his impulsive nature means he often likes to chase her, because he’s trying to be playful rather than malicious, despite our repeated reminders that she does not like it.

Thanks to his FASD brain, he just can’t help himself sometimes!

So it’s a fraught relationship, but thankfully, T and our other cat, Kyrie, have learned to co-exist and he’s even warmed up to T.

Our very first photo of Lanaya when we picked her up at her foster home 9 years ago. She’s much fatter now!

When T pointed out Lanaya’s handiwork, I couldn’t help but burst out laughing.

Of all the places to lay two turds, she was quite intentionally specific.

“I think she’s sending you a message,” I told him with a chuckle. “It’s karma for all those times you bothered her.”

Instead of getting testy, T laughed along with me.

We laughed for quite a bit that morning about it.

There is absolutely nothing profound about this post, other than poop never gets old in making people laugh together.

For families that need ongoing positive social connections, laughter is so healing.

So yah, when timed well, poop is art in itself.

Thankfully, she pooped on the back side of the artwork. The artwork is pictured at the top of this post.

The rest of the day was less poopy.

The meetup organized by the Surrey Place FASD caregiver’s group was fun!

We joined two families we’ve met on three previous occasions and it was heartwarming to see T have fun with the two older boys, 11 and 16.

This is what childhood is all about.

T is the kid with the red cap.

Futures Planning for the Neurodiverse Child

One thing that keeps me up as a special needs parent is thinking about our child’s future.

My workplace is developing its next multi-year strategic plan. Participating in the process made me think about T’s next few years.

Any special needs parent will tell you we just want to make it to the end of the week, so where do we find time to think years into the future.

Organizations that invest the time to executive effective strategic plans thrive and withstand whatever lies ahead.

I believe that special needs families can thrive and weather storms with advanced planning, as exhausting as it seems.

I’m not an expert in strategic planning, but there are common steps that include research, SWOT analysis and scenario planning.

The hubby and I are honest about the strengths, weaknesses, opportunities and threats (SWOT) within T and surrounding him.

We find ways to stay informed about FASD and connected with communities of caregivers, experts and service providers.

Our pragmatic nature guide us to hope for the best and to plan for worst case scenarios.

I’ve been thinking about the priorities in a strategic plan for our family in the next five years.

T will enter his teen years during this period and I am nervous of these years from the experiences I’ve read from other FASD caregivers.

Instead of letting myself be paralyzed with worry, I try to channel it into something productive.

These are what I consider our family’s five priorities for the next few years, along with expected actions to bring this plan to life.

Build Skills, Connections and Wellbeing

  • Advocate and identify school supports to maximize T’s academic outcomes.
  • Identify positive social connections for T within at school and in the community.
  • Build pragmatic skills – e.g. print, digital and financial literacies, self-care, chores – to support independence.

Navigate Adolescene

  • Have conversations with T about bullying, online safety, drugs, sexual health and consent.
  • Identify positive mentor relationships.
  • Find productive activities – e.g. sports, part-time work, internships, etc. – to keep him out of trouble.

Maintain and Increase Personal Capacity

  • Prioritize our self care through exercise, diet and alone time.
  • Identify respite services to give ourselves regular ongoing breaks.
  • Protect and maintain work life balance.

Raise awareness and advocacy

  • Support T in his continued exploration and understanding of his FASD diagnoses.
  • Participate in activities – e.g. blogging, caregiver groups, political activities – that raise awareness of FASD.
  • Explore starting a podcast with T as both an advocacy tool and Papa-and-T bonding time.

Enjoy life to the fullest as a family

  • Maximize family time on weekends.
  • Save for and enjoy family vacations.
  • Always focus on the big picture: FASD is part of our family but it does not define us.

T is also thinking about the future, specifically the planet’s future.

During a recent bike ride around the neighbourhood, we noticed an unusually large amount of water bottles littered at the park.

T got quite angry and said people are destroying the planet. His exact words, “People are assholes!” 😆

So T took it upon himself to do a park clean up and I helped him. We picked up nearly 30 bottles.

During a recent morning at the office, I received a lovely photo from T’s drive to school, along with a sweet text message: “I love the world. But I love you more papa. You are the best papa in the world.”

We don’t always have great days and some moments are so hard. But I always believe in staying hopeful for T’s future.

Having a high-level plan will guide our family over the next few years and allow us to embrace the opportunities that emerge, while feeling better prepared for the storms that lie ahead.

Image at top: Enjoying the view of Thunder Bay during a family roadtrip in summer 2020.

The Joy in the Meander

Slow down, take the detours, be open to the unexpected, stay present, soak in the moment.

We all end up at a finish line, so what’s the rush?

It’s a valuable lesson I’ve learned as T’s parent.

Our family recently helped celebrate the 18th birthday of a friend’s son.

It seemed like yesterday that he was born, then our ring bearer at 3, then countless games of hide and go seek, then suddenly he is taller than me and going to university this fall.

A colleague once told me to enjoy T’s childhood, because it flies by.

I thought about this when I was lying down exhausted one recent weekend morning and T whined for me to play with him.

As tired as I was, I played with him and had a blast play fighting as Skidibi Toilet villain G Man to his hero the Titan Camera Man.

Playing with him keeps me young and I am aware there will be a day when he no longer seeks me out to play with him.

We went for a bike ride after. It was meant to be a short ride but T wanted to explore a new playground he spotted (pictured at top).

So we parked our bikes under the shade of a tree and took an hour-long detour for T to play while I soaked in the beautiful sunshine.

Later, we stopped by Tim’s to get T a cold sugary drink, a perfect end to our weekend.

My experience with parenting a child with a complex disability (FASD) means I am always on guard, have a to-do list that rarely gets done, and rigidly following routines to keep us on track.

But there’s a grace in the meander. It tells us to take deep breaths, it’s ok to get off track, and that we’ll end up where we need to be; the beauty is in the things we experience along the way, often through the moments that are unplanned.

This Saturday morning, I was lying down on the bed, seeking quiet time on my phone when T came in with a bowl of popcorn he just made.

He plopped himself next to me and said he wanted to watch YouTube videos with me. He even offered me popcorn, which he notoriously never shares.

My annoyance at my quiet time being interrupted vanished. He rested his head on my shoulders as I nibbled on a big handful of popcorn.

Step with the Best Foot Forward

A painful truth about being a parent of a child with FASD is the world often sees them at their worst.

A parent shared this, between tears, during a recent weekly virtual FASD caregivers group and I wanted to hug her because I felt her heartache.

I then thought about Mothers Day lunch with family a few days prior.

T was very excited then became disregulated, hyperactive and his impulsivity kicked in – and then said and did things without thinking through the effect, as is often the case with FASD.

One of my aunt told him that he is very rude.

On the drive home, T was still disregulated and mouthy with colourful language with us and another aunt.

So yes, I can relate to the mother who wishes the world saw the bigger picture.

We see T at his disregulated and challenging moments, but we also see him at his kindest, sweetest, caring, charming, thoughtful and brightest best.

It pains, annoys and irks me when people see him having a hard time, because negative impressions stick and it takes a special person to understand the unseen disability is what often drives the observed behaviour.

But I can also say that I’m learning to care less about what others think about T, because I know him for who he truly is.

This long weekend, T got invited to not one but two birthday parties; the first was for a friend’s son’s 18th birthday and the second was for T’s classmate.

I was nervous about a repeat Mothers Day outing.

So we spoke with T before each outing about our expectations and you know what, we had a wonderful fun weekend.

T’s classmate’s party was held at Sky Zone Trampoline Park and it could not have been a more perfect venue for an energetic child like T.

I loved watching him explore this truly awesome indoor adventure park for two hours and I enjoyed watching him just have fun.

FASD can come into the calm of your day like a wrecking ball.

But you gotta focus on the prize in front of you: an amazing kid that is simply trying to make positive connections with the world around him.

Keep the faith that you’ll find your way through the obstacles together – and it means sometimes letting him lead the way too.

That your beloved child will have moments to shine – and who the hell cares whether it’s just you or the entire world that sees them.

Postcards from the Edge

The first text message simply and sweetly said, “I love you.”

I was en route on my early hour-long commute to work and it was a welcomed surprise.

On in-office days, I often leave before T is up and when I do see him before I leave, I get sweet long hugs, which energize me for the day.

T has an old phone of ours, which runs on wifi. We only let him use it as home, not at school; only with us, no social media.

When he discovered emojis. 😆

I smiled when I received T’s text.

We kept each other company during my commute, as our subway system now has cell access.

We even did a video call, so he could see my commute, including the subway ride, which was a foreign world to him until then.

We said goodbye after a tour of my office.

Finding time for connection every day is important, especially in our busy lives.

For a child with FASD, it is important to help them regulate and feel good about themselves, because they spend so much of their day overloaded with demands, which often lead to crash and burns at the end of the day.

So our new routine is a welcomed change – and these small moments add up to a larger whole.

And let’s be real, not all moments with T during the day are pleasant, so I welcome these sweet moments with our little guy when I get them.

Many people tell us that this kid has a lovely sense of humour and I agree.

Keep the Faith

In 2015, the hubby and I finished our South America trip at Rio de Janeiro. It was our last solo trip before T unexpectedly came into our lives.

I revisited this special city last night when Madonna completed her Celebration Tour on Copacabana Beach to a record 2 million people.

We watched her show in January after Ma passed. It was cathartic, as motherhood was a central theme – opening with the never-performed “Nothing Really Matters,” a song about being a mother, and the show beautifully included her four youngest kids.

The most memorable moment during our visit to Rio was seeing Christ the Redeemer atop Corcovado Mountain.

It was raining hard. Half the tour group stayed in dry shelter and we ventured up.

The trip up Corcovado Mountain felt dreamy with fog.

At first, all we saw was fog. Then He emerged and the rain stopped. It was surreal and magical, a moment that reminds me about having faith.

Last summer, M had a near-death medical scare. She could’ve cancelled her tour but, after a 3-month delay, she set off to complete an 81-show tour that’s among my Top 3 of her tours.

When I think about the heavy rain that falls, I can stay in shelter or keep venturing to my destination.

Either approaches, to be clear, are ok.

There have been several moments during the last while when all I could do was stay in bed.

But there’s also something affirming about staying the course and having faith that things will work out, even if it’s not quite – and often rarely is – how you expect it to.

Beautiful Rio de Janeiro from atop Sugarloaf Mountain.

Family is Forever

Eight years ago today, we got a call from Children’s Aid Society. We were matched with a child!

It was a Thursday evening and the hubby and I were shocked, because it had been seven years since we had started the adoption journey. We had given up hope we would be parents.

They shared T’s history and we learned he was prenatally exposed to alcohol and it was one of the things we said we would not take on.

But when we met his foster mother the next day and saw T’s photo, at age 1, we fell in love.

From that day on, it was like boarding a bullet train and our lives have been a roller coaster ride since.

Caring for a child with FASD is relentless. The speed, the chaos – they never slow down, even though you feel the wheels of the train falling off.

Most days come with challenges that most people could not understand nor bear.

But thanks to T, we’ve experienced the joys of parenting, many incredible memories, and love and grace.

So it was fitting that on this day today that T would be reunited with his foster family, who took amazing care of him for his first year of life.

It was his foster brother’s birthday and he invited T to his party.

The last time we saw them was four years ago, for T’s 5th birthday, a month before the world shut down for the pandemic.

T was very excited to see them, including during the hour-long drive to their town.

The party was held at a Brazilian Jiu Jitsu studio and there were parkour activities, nerf gun shootouts, pizza and cake.

I loved watching T reunite with his foster parents and brother, as if time had not passed. The bond was still there.

T’s foster brother is also neurodivergent and while his parents never quite said it, I expect it might also be FASD. But it’s not my place to ask and they will share when they want to.

His mother shared with us about their struggles and I wish we lived closer, so T and his foster brother could be companions.

But alas, the sweetness of life is to be savoured, and the party flew by and it was time to say bye.

T gave his foster parents and brother big hugs and off we went, driving home in the heavy rain.

There was a nice message on the wall of the Jiu Jitsu venue. It read, “Today’s challenges become tomorrow’s strengths.”

Just like T was meant to be in our lives, I was meant to see that message today – to remind me that the hardships we face today will bear sweet fruit for T tomorrow.