Travel in Light Years

How do we give children the space to dream and view the world with wonder?

As children, movies and TV shows often tell us that anything is possible if you believe in dreams.

As an adult, I have a nuanced view, because we don’t always get what we wish for – and that’s ok.

As a parent, I love watching T experience life in his light-speed fashion with wonder, optimism and fearlessness.

I want this attitude to grow but as he gets older, it is important to temper it with pragmatic optimism – or I’ll set him up for disappointment otherwise.

A library book he borrowed last week gave us a chance to chat about why it’s important to dream and the need to work for them.

Canadian astronaut Chris Hadfield seems to be a recurring figure in our bedtime reading.

A few years ago, a friend gifted T “The Darkest Dark,” Hadfield’s children’s book based on his childhood. It helped T learn the dark is nothing to be afraid of.

The book “Meet Chris Hadfield,” is a non-fiction biography of Hadfield.

I pointed out to T it’s the same Chris from “The Darkest Dark,” except he’s a grown up and became an astronaut.

This book had a nice message about having dreams and to work for your goals.

I love the last paragraph in the book: “… Chris also reminds people that to reach your goals, you need to work hard and be prepared, so that you will be ready for whatever adventures are ahead.”

T and I chatted about what this means and I let him know that’s why we do all that extra reading and homework that he sometimes finds annoying. It helps him and his brain grow.

Being a pragmatic optimist, I am mindful that because of T’s FASD, he will have additional struggles in school, daily life, and work.

As to how FASD may impact him, all we can do is carry on as we already are: proceed with pragmatic optimism, accommodate his struggles, anticipate and plan for future challenges, adapt from his setbacks and celebrate his successes.

As adults, we know that the sky may not be the limit but it should never stop us from looking up with childlike wonder and reach for the stars.

“Listen, can you hear that distant calling

Far away, but we’ll be with you soon

Rocketing to outer space in orbit

Take us to the popstars on the moon…

Travel in light years…”

– Light Years

Thank You For Being a Friend

Life is blessed and brighter if we have a Dorothy, Rose, Blanche or Sophia in our lives.

During pandemic lockdown, I watched a lot of Golden Girls reruns.

It was a show I watched after school in grade school and nicely complemented the Teenage Mutant Ninja Turtles!

Revisiting the show as an adult, the story of four older women living together and finding a new lease on life felt comforting.

Parenting changes one’s social life, because you have less time and energy to hang out with friends. Layer on a child with special needs, time and energy are even rarer.

I often read with empathy about parents of children with FASD who’ve lost friendships, because of misunderstandings over their children’s challenges, often perceived as bad behaviour.

I can relate as I sense the judgment from other parents at the park when T – who plays nicely most of the time – has one of his moments.

“Thank you for being a friend

Traveled down a road and back again

Your heart is true, you’re a pal and a confidant

And if you threw a party

Invited everyone you knew

Well, you would see the biggest gift would be from me

And the card attached would say

Thank you for being a friend.”

Friendships evolve. Some strengthen, some drift or fall apart. The ones that endure are based on mutual care, respect, empathy and effort.

I am blessed to have amazing friends; some of whom were only 5 years older than T is now when we first became friends.

The hubby and I have been open with our close friends about T’s FASD since the beginning.

We make them aware of the highs and lows and how FASD may manifest in a social situation. Some friends have also witnessed his moments.

We balance between educating and not making our conversations all about T’s diagnosis. It’s one part of our and T’s larger life.

Hiking a trail with “Auntie E” at the 1,000 Islands.

We try to be strategic about activities we do with friends.

We include time for T to run around. We avoid situations that may disregulate T, because that’s no fun for anyone.

The reality, however, is as a parent of a child with FASD, especially during the pandemic, my time with friends is limited.

So I’m thankful for the ways we make time for each other – Zoom chats, lunch get togethers, sending a “How are you” text, and even a roadtrip to the 1,000 Islands.

I’m thankful for the ways my friends support T – from giving him books for birthdays to gifts that support his sensory needs.

During the recent May long weekend, a group of our close friends got together for lunch at Congee Queen – home to T’s favourite Fish Maw Soup.

I had seen some of them during the pandemic but this was the first time all of us were together as a group since the pandemic started. The last time I had seen one of them was in February 2020!

It was soul soothing to catch up. It felt like no time had passed, except one of them has a three-year-old daughter we haven’t met yet!

Afterwards, we went to get bubble tea with T’s “Auntie E.” We were supposed to get takeout but ended up sitting and chatting for an hour.

T got bored of the adult conversation and started drawing on his hands. My friend reached her hand out and offered it for T to draw on.

The Giving Tree

A scary thunderstorm downed a tree and created unexpected treehouse fun for neighbourhood kids.

Saturday started off like any other Saturday – with T getting up earlier than my brain and body was ready for; playing dead no longer works.

After lunch, as I was about to head out for groceries, Environment Canada issued a severe weather alert to cell carriers in southern Ontario.

The sky looked fine, but since this was our first time receiving such an alert, we took it seriously.

Soon after the hubby moved the car in the garage, the sky turned dark.

We stood on our steps and looked at the eery calm sky. We heard a strange wind sound and wondered if this was the calm before a tornado.

T looked at cars outside and said that people should move them in or they won’t have cars after.

As winds picked up, T and I looked with worry at the tall oak tree in our backyard.

Suddenly, the hubby screamed that the tree in the house next door just fell.

T was both scared and excited. It was all our first time beholding such a sight.

The rain and wind died down. We went out to survey the damage.

As you can imagine, this was the coolest thing ever for T, a hands on geography lesson.

When the sun came out, we headed back out and T claimed the tree as his personal treehouse.

Kids teach us so much about making the best out of a bad situation – and the storm was bad indeed.

I stood on the sidewalk, watching him explore the treetop, imagining the adventures he was having inside his vast imaginary world.

Moments later, four kids joined him and it was the most precious joy to behold.

I thought about one of my favourite children’s books, “The Giving Tree” by Shel Silverstein, the story of a tree that loved a boy unconditionally despite his often selfish actions.

I couldn’t help but think these increasingly severe weather we’ve never experienced before are a result of climate change; the consequences of harmful actions to the planet.

Yet the immediate outcome of the tree fatally falling down on our street was to provide an afternoon of joy and fun to children.

There was a beauty in that very moment about childhood innocence, unconditional love and living in the here and now.


What if we let the weeds grow freely?

I thought about this from the perspective of parenting when I read this article about naturalists encouraging people not to mow lawns or pluck weeds, in an effort to encourage biodiversity.

Biodiversity, it is argued, is good for everyone, including animals and endangered bees.

Naturalists encourage us to look at weeds not as invasive, but contributors of unique beauty.

I thought back to the first photo I posted of T when I started this blog in 2019.

T swinging on the outside instead of the inside reminds me why he can be like a wildflower.

He may come across like the active duck in a family of calm ducklings or the bright dandelion in a field of tulips.

I wouldn’t have him any other way.

We live in a society that needs more awareness and understanding of neurodiversity.

How wonderful is it to stare out into a field of dandelions – like the one on the other side of our backyard – and see a golden carpet of sunshine rather than a gardener’s nightmare?

What if we looked at wildflowers in society with these eyes and accommodate them into our gardens instead of weeding them?

We’ve been blessed with nine consecutive days of sunny warm weather.

The perennials in our garden are blooming, giving us a vibrant visual feast.

Our cherry tree bloomed its beautiful white petals, a sight we enjoy for a handful of days each year.

We spent this weekend getting ready for our annual gardening during the May long weekend.

We stopped by a nursery. Like last year, we let T pick a flower to plant in our garden. He could pick any one he wanted.

This year, we let him pick two. He chose these lovely pink and yellow flowers.

The hubby muttered to me that they didn’t match the colour palette he had in mind.

And that’s ok.

We’ll think of T as these lovely yellows and pinks sprout over the next few months.

Earlier this week, the hubby noticed a hole in our garden. He was convinced and annoyed that squirrels were burying food there.

Yesterday morning, he called excitedly for T and I to come out for a surprise.

It turns out baby rabbits were nesting inside.

T stared at the babies with delight and care.

Then we covered the nest back up with the grass that the mother bunny had used – to leave nature alone and let it take its course.

Sharing A Child’s FASD Diagnosis with Them

How do you share difficult life changing news with a young child?

That’s a question I’ve been thinking a lot about since we received T’s FASD diagnosis in January.

The hubby and I shared the info with the school right away as it would better inform the way they supported T.

We’ve held off on sharing the info with T as it’s been a year of unexpected events and we didn’t want to add this on top of everything.

We’ve decided we will share his diagnosis this summer, as it is a less pressure time.

We also have three weeks off – can’t wait! – to spend with the hubby’s family and T’s favourite cousin, which can provide positive emotional cushion.

We believe that honesty is key.

From lived experiences shared by individuals with FASD that I’ve come across, they speak about how knowing their diagnosis helped made the world make sense to them.

This testimonial below by advocate Reinier DeSmit, who received his diagnosis late in life, moved me deeply when I watched it a year ago.

I consider our family very blessed to have received this diagnosis early on in T’s life. I feel deep in my heart this will benefit T, despite the hurt, confusion and anger it may also cause.

We will take a strengths-based approach.

From resources I’ve seen – see the links at the end of this post – it’s important to take a strengths-based approach.

We will highlight T’s many gifts: He’s a bright, caring, funny, strong, determined kid among many other positive qualities.

We will discuss that because of his diagnosis, he will need supports – such as why he’s had a CYW.

Where possible, we will use age appropriate tools, such as books and online games (see a great example below).

We will be upfront that we don’t know all the answers but reassure him – and ourselves – that we’ll figure it out together.

Knowing T, we will need to do this over time. We only get his attention for a short while, so we will need to do this in bite-size age-appropriate pieces.

Best case scenario, there is instant adoption and a positive reaction. Worst case scenario, anger, hurt, confusion and resentment. And of course, everything in between.

Regardless of the outcome, we will do our best to support him with patience and empathy.

We know this will be a difficult conversation(s), but it will be one of the most important milestones in our parenting journey with T.

Community Resources

Here are some great resources shared by our FASD service coordinator on how to take a strengths-based approach in sharing and helping a young child understand an FASD diagnosis.

Do you have a recommended resource to add to the list above? Please e-mail me at


A few weeks ago, T randomly asked about his birth mother.

We don’t know what prompted the question but we took out his adoption book and showed him the one photo we have of his mother.

We asked him what he was thinking and feeling but he was quiet. Then he moved on to his next activity and hadn’t asked about her since.

Every Mothers’ Day, I think about his mother and what I would tell her if we spoke.

It’s important to the hubby and I that we honor his requests anytime he asks about her.

She is part of his identity and we will provide him the pieces to complete that puzzle in his mind.

Mothers Day was wonderfully relaxing.

T and I spent the morning doing learning activities and playing in the park. In the afternoon, the hubby took T out to play with his scooter.

In the evening, I dropped off Chinese takeout for Ma and my Aunt as a Mothers Day treat.

I am thankful for every Mothers Day we celebrate with Ma as I’m aware they are finite.

Mother Nature, on the other hand, is the ageless force around us that transcends time.

It was a beautiful weekend, the first T-shirt, shorts and sandals weather – which I define as 13 degrees Celsius and up.

The beautiful flowers in our garden were blooming – lovingly tended by the mother who lived in our home for five decades prior to us.

Shades of yellow, orange, red, blue, pink, white. The delicate purple checked lily has also made its delightful annual appearance – pictured at top.

To all the moms, grandmas, caregivers – wishing you all a Happy Mothers Day.

Advocating For Your Child

I took a nervous breath as the hubby hit ‘Enter’ on the Zoom call for the School Services Team meeting.

This meeting held this past week was when we learned the school’s plans for supports for T when he enters Grade 2 this September.

Advocating for your child is a necessary part of being a special needs parent.

It’s a skill that one might not feel comfortable exercising – myself included – but it is a necessary one to practice over time.

School and community resources for individuals with FASD can feel limited and opaque. But it’s important to advocate as it can make the difference in the services a child receives.

Being T’s parent has taught me to step out of my introverted comfort zone.

I’m still learning and stumbling as T’s advocate, but here are a few tips I’ve learned.

Understand how the system works

What’s the organizational structure of the school board and community organization? What services do they offer and how do they work? Who makes decisions and who influences decision makers?

Less than three years ago, I didn’t know the hierarchy beyond the school principal and learned about the roles of the superintendent, director, elected trustee and board itself.

When the board cancelled T’s specialized program, I made a deputation to the board. It helped build a case of support for T’s CYW.

Build a network of allies

It takes a village to support a child and building respectful relationships with teachers, principals and community service providers is important.

We’ve been blessed with great supports thus far. T’s principal was instrumental and key in advocating for a CYW for Grade 1 this year.

When we had our previous SST meeting in January, T’s community support team joined the call and did a great presentation about his FASD diagnosis and spoke about his needs.

Preparation is key

Prior to every SST call, I prep with the hubby. These meetings are short, so we need to be focused.

We talk through all potential outcomes – best to worst case – and how we would respond to each scenario presented to us.

When I deputed to the board, I had five minutes. So I rehearsed. I held a photo of T as I spoke, so the board members could put a face to the boy I was advocating for.

Diplomacy paves the way

I don’t doubt that a school board wants every child to succeed but I believe their intentions are not always matched with resource availability.

The hubby and my priority is T’s needs. The board, however, has finite resources they have to allocate amongst many differing priorities.

I always keep this in mind when I go into one of these meetings. I try not to go in guns-a-blazing, because that approach often gets people’s backs up.

Speak Up

Diplomacy is key, yes. But sometimes, you also need to stir shit up.

When T’s specialized program was cancelled, the reason provided was under the guise of moving to an inclusion model. But it was so obviously done as a result of recent government budget cuts.

I was so angry the hubby and I found about the cancellation from the media – rather than the board – so I shared our reaction with the media.

It didn’t make a difference in reversing the program’s cancellation but it did generate some discussion about the importance of true inclusion in education and that you can’t just pay lip service to inclusion; you have to resource it too.

Focus on the Long Game

As life teaches us every day, things will not always go your way.

We were so lucky to have a wonderful Child Youth Worker in Grade 1. We were repeatedly reminded this was a rare feat and I’d like to think our advocacy helped T get one.

We went into this week’s SST meeting hoping for a similar arrangement for Grade 2. We learned that this was not going to be the case.

The school let us know they secured a dedicated CYW for next year but this role is to serve the entire school, including helping T during unstructured times such as recess, when he struggles the most.

We were, and still are, disappointed but not surprised.

We are nervous about Grade 2. We believe the school is underestimating T’s needs in the classroom, despite his academic gains. His behaviour these last few weeks have been so challenging and I can only imagine what it’ll be like without a classroom support.

Alas, we will recalibrate with this future in mind. We have another SST meeting in the early Fall and it’ll be another opportunity to advocate.

Life is a marathon and not a sprint.

Later that day, after I picked T up from daycare, we stayed at the park to play, as it was a beautiful day.

T ran around in his usual Tasmanian Devil fashion, not a care in the world, stopping every few minutes to see if I was paying attention to him.

I smiled back. On the inside, I felt apprehensive about the future and uncertain how things will unfold in the new school year.

But I knew one thing was for certain: we will somehow figure it out together.

Ice Cream Truck

Like a child hypnotized by the Pied Piper, so was T to the melodic chime of an ice cream truck.

On Thursday afternoon after daycare pickup, it was sunny and beautiful, so T and I hung out in the playground before heading home.

The melody of an ice cream truck appeared out of nowhere. T asked for a cone and I reminded him we don’t have ice cream on school nights.

The melody triggered memories of when T did a happy dance in our old neighbourhood whenever the truck appeared and he’d skip towards the lineup, in rhythm to the melody.

I then remembered this exact moment below when he had his very first ice cream cone, at age 3 on a mild late April weekend. The look on his face as he had his first lick ever was so precious.

As T played, I thought about how our brains retain and recall memories; what we can keep and the many moments that are forever lost over time.

A 2019 study reinforces the hippocampus in the brain is the hub that stores memories and suggests that it works with the neocortex to fill in the details of a memory.

Yah, it sounds academic. For me, this reminds me that we remember the most positive or negative moments – because our reactions are so visceral.

So how do focus on moving forward with the positive experiences, while learning from the less positive ones to avoid repeating them?

As I thought about this, T sat on the swings, kicking his feet up and pulling them back, building a steady momentum until he was quite high in the air.

It was just last summer when he tried valiantly to do this but gave up in frustration. This was his first time doing this on his own in front of me.

We cheered together and I knew this was gonna be a moment I’ll recall vividly one day.

When we got home, I read his teacher’s Communications Log. It was an up and down day, but there was a wonderful comment: he moved up two reading levels to Level 14!

It was just a month ago that she moved him up. He was now one level shy of reaching Grade 1 year-end expectations.

The hubby and I made a big proud freaking deal out of it. We then broke our no ice cream on a school night rule and gave T a small scoop after he finished his homework.

Waiting for ice cream at the Bluffs last Sunday.

Heaven and Hell

“What does heaven mean?” T recently asked me during bedtime.

I believe in God but am apprehensive about organized religion.

I had a hurtful experience with church in my teen years but I still believe all paths lead to God or however one calls them.

I believe that those who politicize or weaponize religion cause the greatest evils in our world.

I will encourage T to keep an open mind about religion as he grows up and to learn about all religions. He can decide what works for him.

But in the meantime, I had this pressing question from my inquisitive 7 year old – and my mind was half passed out.

I gave what I felt was a balanced answer: “Some people believe that heaven is a place you go to after you die.”

He sat in silence for a few seconds and then replied in typical T style, “What the hell did you just say?”

I had to stifle my laughter because I didn’t want to reinforce that kind of language we’ve already been struggling to contain.

At least he knows the opposite word for heaven!

Speaking of death, T’s fascination with cemeteries has resurfaced. He always notices them during our local drives and road trips.

During our recent drive to the Bluffs, we passed by a few cemeteries and sure enough, he spotted them and asked what they were like inside.

I reminded him that prior to the pandemic, he had visited my Pa’s grave many times. But he clearly forgot about these visits.

He asked if we could visit the cemetery where he was buried and I said we’d to take him this weekend.

During bedtime this week, he asked me interesting questions like: did all tombstones have RIP written on them; what bodies look like underground; and whether someone will come clean his tombstone when he’s dead and buried.

It was not exactly the most upbeat conversation, and I felt bit sad talking about it, but I answered each question candidly, because it’s important to validate his thoughts.

The hubby wasn’t concerned when I spoke about it with him afterwards. He thinks T is being curious.

During bedtime last night, T asked me in his hilariously blunt way, “So how many more days until we visit your dead Papa?”

As with everything in our life with T, you gotta laugh at these unintentionally absurd moments.

I told T he would’ve loved my dad, because he was kind and caring. Similarly, I think Pa would’ve been very amused by our T.

Playing Sidekick to My Incredible Hulk

Our T has found a kindred spirit in a superhero with anger issues and the irony is not lost on me.

Last week’s loan from the school library was a non-fiction book featuring the green Marvel superhero and we enjoyed reading it over several nights.

I love that reading comics or books inspired by comics is more acceptable now. Letting kids read what interest them help them develop an enjoyment of reading.

T was very engaged and asked great questions about concepts like energy and muscle mass.

I grew up loving superheroes. Comics provided an escape. I loved the X-Men comics, because they provided a metaphor for being different.

I was Batman to T’s Robin for Halloween 2017.

Some saw the X-Men’s plight – living in a world that feared them – as a metaphor for racism, ableism and for me, homophobia.

I am amused that T is interested in the Hulk, a brilliant scientist who struggles with controlling the strong angry monster in him.

Our T is a bright, capable, determined and caring boy full of potential.

Just this Friday, his teacher let us know that he’s very good with counting money.

I saw this when we did a worksheet on Saturday how quickly he did the questions in his head.

Regulating his emotions is challenging. The rude words and anger pop out.

He hasn’t leveled any cities like the Hulk, but the emotional debris his worst moments leave behind can be chaotic and disruptive.

This Sunday morning, I had a fun day all planned. After finishing his work in the morning, we would go on a hike as it was a beautiful day.

He wrote the lower case “M” incorrectly on his worksheet and I asked him to correct it and it triggered a tantrum.

Out came the rude words and the hitting and I had it. I got up and left the table.

T as Venom for Halloween 2019.

Parents caring for individuals with FASD often speak about being their child’s external brain.

To put this in superhero terms, we’re the Alfred to Batman, the Jarvis to Iron Man, the Aunt May to Spider-Man.

No super powers, no backstory, but I somehow keep our Hulk’s life in order.

And today, that external brain needed a break from his chaos. I sat in my room for a few hours.

Later in the afternoon, T and I went for a drive to the Bluffs – far later than I had planned.

During the drive, T talked about how he didn’t like playing Pac-Man because he always lost.

I reminded him it was important to keep trying.

I added his Daddy (the hubby) and I always try and never give up on T, no matter how frustrated he makes us. We never give up, because we love him.

T was silent, which meant he was listening and absorbing it all.

It was a pep talk not just to our superhero, but to myself.

We arrived at the Bluffs and T made a beeline for the ice cream truck and asked for a Spider-Man popsicle.

The ice cream, fresh air and outdoor time was just what we both needed.

Hitting the Reset Button

During a work call, I got a call from T’s daycare teacher. She was not her usual calm self.

She said an older student had ran off the bus during drop off and pushed T against a wall. She had to shield him from further harm.

A few hours earlier, the hubby and I received an email from his CYW letting us know the day before T had bothered a younger peer on the bus and the mother called the principal very upset.

It was a Friday afternoon and all I wanted was to get to the weekend.

My mind was now sandwiched tightly between two extremes of emotions: one of disappointment and one of upset and concern.

This was a week ago. The past week was challenging at home and school.

One of the present challenges we have with T is his impulsivity and emotional regulation – two things that create a difficult combination.

He says the first thing that comes to mind and when he’s triggered or disregulated, he can say very inappropriate things. Lately, it’s escalated to verbal threats – to us, peers and teachers.

According to T, the older peer on the bus was bothering another peer and T told him to stop and that’s when the peer got upset.

I’m aware there are two sides to a story and that T’s attitude can escalate a situation. Nonetheless, while I have empathy for the peer, physically hurting someone is never ok and we’re working with the school to address the situation.

We are fortunate to have understanding teachers at school and daycare. We advocate on T’s behalf; we don’t make excuses for him but we frame his behaviour as a result of his disability.

The hubby and I are aware that people may not always be understanding. If his behaviours continue as he gets older, they could lead to suspensions and social alienation.

We do our best to remind T to act with kindness and to teach him strategies – like walking away or asking a grown up for help or quiet time.

Last Monday, we had a call with our FASD service coordinator – to look into funding for potential Special Service at Home.

She first asked us “Can you tell me about some of the recent wins that you had?”

The bus incidents were fresh on our minds. But we answered her question, including talking about his recent successes with reading and math.

It was a great exercise, because it allowed the hubby and I to take a step back to refocus on the big picture.

For other parents going through a similar journey and experiencing the same frustrations, I can’t emphasize enough the importance of doing this.

To reset.

Thankfully, this past week was a short one and we had one goal in mind for our Easter long weekend – to reset, Daddy, Papa and T style.

Sunday was gorgeous – cool but bright and sunny – and we went for a very satisfying 2.5 hour hike at Mono Cliffs.

T is in his element in the outdoors. He had lots of space to burn off the candy he had instead of breakfast that morning.

The outdoors calm him down; it calms all of us down.

Our hike was a wonderful way to cap off a calm, pleasant weekend at home.

As I watched T stare at the cliffside views and the clear waters, I reminded myself to not let the challenges get to me.

It’s important to acknowledge them, to take them seriously, but to also let them go and move on.

T is a great kid. He is a work in progress – but aren’t we all? He’s made great gains and he will continue to make gains.

And the battles? We will face them as we always have – one at a time, together, Daddy, Papa and T style.

Retracing Our Footprints

I spent last weekend filing documents that have piled up over five years.

Being a parent is a full time job on top of a job.

Being a special needs parent is like having an extra job on top of parenting – managing school and service appointments, taking your child to appointments, keeping track of reports and doing your best to follow up on recommendations.

So much paperwork has piled up from the last five years from school – e.g. IEPs, report cards, T’s lovely work – and medical and community services – e.g. therapy reports, T’s recent diagnosis.

I’m usually organized, but with the pandemic and the added job of managing Ma’s appointments, I’ve had no energy to organize the clutter.

Last Saturday, I hunkered down for an afternoon and sorted through the mess.

And this was the result:

T’s work from preschool and kindergarten were sorted into their own bags and binder. It was a joy seeing his artwork and scribbles/printing – reminding me that progress is steady.

I filed reports from elementary school – IEPs, safety plans, report cards – into one binder, in chronological order, because I’m anal retentive.

His most important documents – adoption papers, our wills, his therapy and diagnosis reports – were sorted into a filing accordion ($3 from the dollar store!) so they’re in one place.

And the most therapeutic part – I ended up with a pile of documents I could put in the shredder!

Celebrate and Remember Every Milestone and Hurdle

It was therapeutic to look back at the things that consumed our thoughts.

This was a goals document we prepared for a meeting with T’s developmental therapist, a service provided before he started pre-school.

It was humbling to see how our use of language has evolved. Our perspective of “bad” has changed into one that recognizes these are challenges.

This was a growth chart his developmental pediatrician provided during his first assessment that resulted in a prognosis of at risk FASD.

It’s funny to think back about how I obsessed over how his height and weight was compared to the average peer. At some point, I stopped worrying.

It’s like how we are now motivated to help T move up his reading levels – but also recognize he will do so at his own pace.

This “FASD: Strategies Not Solutions” booklet was provided during a parenting workshop hosted by the Children’s Aid Society.

I put it on my bedside table as something to re-read over the coming weeks.

The best part of the filing exercise was coming across so many wonderful photos from T’s toddler and preschool years in Montessori.

He was just starting his school experience. He was so small and innocent. Things seemed so much simpler back then.

Then I stumbled across the letter from the administrator of the Montessori telling us that T was not invited to apply for the Fall term – what would’ve been junior kindergarten – because of his challenging behaviour.

I didn’t feel the rage I felt when the incident first happened. I felt peace and gratitude.

His school life continues to have ups and downs – but that incident redirected T to public school and he is all the better because of it.

So I’m sticking my tongue out again at those stupid Montessori administrators. Shame on you.

It was very satisfying to get the filing work done.

That evening, the hubby, T and I enjoyed a long walk. On the way back home, we stopped by the local Vietnamese restaurant and picked up Pho and spring rolls as our weekend treat.

Dreaming of Camping Adventures

A dear friend asked me for campsite suggestions and it took me down a road of happy memories.

I started camping at 21 when a friend invited me. We camped together almost every summer for nearly 20 years with the hubby and his partner.

I never camped as a child and it was an experience I wanted to share with T when we adopted him.

Since age 1, T has gone on camping and outdoor adventures and I treasure each experience.

I believe the outdoors are great for kids with FASD.

Every child is different. For T, the vast outdoors give him plenty of space to run wild and safely expend his endless energy.

I believe that green therapy provides healing qualities for the mind, body and spirit.

Sharing my picks with my friend took me down memory lane to fun camping adventures with T.

Summer 2016

We’re blessed to live in a province with an abundance of parks with campsites that are a short drive from the city.

My favourite park is Killbear, located near Parry Sound, Ontario. This was the first campsite we took T to, two months after he entered our lives.

T was just 1.5 year old. Look how tiny he was!

Yes, we set up his portable crib! That stuffed Ladybug has been with us on our adventures since Day 1 up till our recent Spring Break trip.

T’s first time waking up at a campsite.

I’ve posted this photo of T looking out at the beauty of Georgian Bay from the rocky shores of Killbear before. I never tire of thinking about the look of amazement in his eyes.

One of my favourite candid photos of T and I. He did not enjoy swimming in the water that summer because it was too cold.

One of my favourite photos of T and the hubby, taken by the windswept “AY Jackson” tree. It’s tradition to take photos of T with this tree during every visit – to mark the passage of time.

Later that summer, during Labour Day weekend, we went on a second camping trip – this time, with my camping friends at beautiful Algonquin Park.

This was T about to go on his first kayak ride!

Summer 2017

We returned to Algonquin the following summer. There is so much to explore at this park.

It was evident from a young age how drawn T is to the water.

This was T’s first canoe ride around Opeongo Lake.

The scenery was beautiful. But our two-year-old still needed his afternoon nap.

We stopped on a small island and had it all to ourselves. We enjoyed a picnic. In just one summer, T became comfortable in the cold lake water.

Look at that vast open space for our little guy to run around in and explore!

On our second evening, the temperature dropped to 8 degrees Celsius and we thought we were gonna freeze to death. T woke up crying of the cold so we took him out of the crib to sleep with us.

Snuggling together in a tent is a priceless experience – especially when you wake up next to this sleeping pose at 7 am.

Summer 2018

In 2018, we camped at Bon Echo, which had scenic lakes to canoe and kayak along.

I mean, look at this lovely rocky facade.

And this lovely small island we stopped at.

T enjoyed swimming during this pit stop.

And a little snooze on the paddle back.

Camping food is the best! My friends and the hubby and I share cooking responsibilities and we have the best grilled meals!

This grilled pineapple was amazing!

This was the last night from our very last camping trip to date.

We woke up the next day at 5:30 am to pack up and leave because rain was in the forecast.

This soothing pink rainbow sunrise greeted us as we drove out of the park.

We did not camp the following summer because the hubby was knee deep on a busy work project and then the pandemic hit half a year later.

While we’ve enjoyed outdoor adventures during the pandemic, we have yet to camp again.

Our upcoming summer is pretty much mapped out and we’ll likely skip camping again.

But after this recent photo journey, I am hopeful and energized to return to camping soon.

There are many more memories to be made!

Kids Keep Us Grounded

T walked in the door with the hubby, who had taken our cat to the vet.

We circled him with a congratulatory hug because his teacher had e-mailed us great news.

She had a regular check-in with T’s reading. He had been reading at Level 4 – on the Developmental Reading Assessment system – the past few months.

She tried a Level 10 book and he read above 90% accuracy, asked great questions and made excellent comments about the pictures. So this is the instructional level he will read at now.

The expectation for Grade 1 is to get to a Level 16 reading level at the end of the year.

As we are well aware with our parenting journey, every child moves at their own pace.

For T’s Independent Education Plan, his teacher set the goal to get to Level 10 by the end of the year. With three more months of school, we’re hopeful to help T get closer to Level 16.

I was on a work call when I received his teacher’s email and I teared up. It was a busy frenetic week and the good news was very welcomed.

I paused the meeting to share the news with my colleagues, because I was so proud.

We told T how proud we are and how his practice has paid off. We could tell he was proud.

I returned upstairs to work – feeling that adrenaline rush of pride and awesomeness.

Then I heard T screaming and throwing a fit.

I went down to investigate. Turned out our little genius had squeezed himself into the tiny cat crate and now couldn’t get out.

I had quite the chuckle, because kids really do keep you humble and grounded.

But I still felt proud and continued to ride the high.

Then I figured I’d let T sweat it out a bit longer in the crate. Maybe it’ll teach him to think twice before crawling in next time.

And before anyone freaks out and reports me to children services, he figured out how to get out on his own.

Disconnecting to Move Forward With a Clearer Head

During our recent week away, I had one focus: unplugging and recharging.

Special needs parenting often leaves caregivers feeling perpetually foggy headed.

Thanks to amazing colleagues, I checked out of work. I told family to e-mail me about urgent issues, but I tuned out everything else.

I slept very well – passed out before 11 and woke up at 9. The 10-hour sleeps, fun at the pool and beach, and plates of fresh tropical fruit helped clear the persistent fog in my head.

Spring Break was an important reminder about self care and refilling my cup to help others.

I returned home with renewed energy for T.

I miss having plates and plates of fresh mango, papaya and pineapples for every meal.

I spent last weekend organizing and filing away documents related to T’s school and community services that have piled up over the past year.

It helped the hubby and I prepare to regroup with T’s FASD service coordinator on Monday.

It had been several weeks since they provided T’s FASD diagnosis and the hubby and I had a chance to digest the report and recommendations.

We had a great discussion focusing on what we feel are the priorities for T’s immediate future:

  • Behaviour Support – Now that T’s aged out of behaviour therapy services with Surrey Place, they recommended another organization’s 12-week parent-child program that may be a fit. There is a waitlist and we asked if the coordinator could help us with the intake process. T has made great gains and we want to help him build on his success.
  • Physical Recreation Activity – We’re gonna register T for swimming lessons this summer and are looking at basketball team activities to build on his teachers’ observations of how much he loves it at school and to give him opportunities to build teamwork skills. The coordinator let us know about potential supports that may be available for these activities.
  • Respite Support – One recommendation in the diagnosis report is the importance of self care for the hubby and I. The coordinator is helping us look into potential respite services.
  • Social Connection Opportunities – We also told the coordinator it was important for us to build a community of similar aged peers for T who are on a similar journey as him.

It was very helpful to start to collaborate with the service coordinator to identify a plan for T and we are reconnecting again in a few weeks.

Meeting with the coordinator reminded me about who we work hard for every day: our amazing T.

It was one of those clear-headed moments of gratitude and optimism – and I savoured it, because dark clouds and fog are always on the horizon.

During recent moments of stress, I am thankful to be able to mentally escape to recent memories on a calming beach unplugged from reality.

T could spend hours digging up sand.

The Power of Inclusion

When all kids are included, accommodated and set up for success, everyone wins.

Maintaining a positive relationship with T’s school is a priority for the hubby and I.

We try to be open, transparent and collaborative with his teachers and principal.

We shared his recent FASD diagnosis and we’re thankful his school has been so supportive.

We’re blessed T has a super organized teacher and a dedicated Child and Youth Worker.

Having an Independent Education Plan (IEP) is helpful. It doesn’t mean that less is expected of him, but that he is set up for success.

Grade 1 has had ups and downs, including: a period of disruptive behaviour, his CYW’s unexpected departure, and adjusting to changes to his medication.

But as life with T continues to show us, when we persevere, we get through the rough patches.

As we entered the second half of the school year, I feel hopeful we’ve settled into a positive rhythm.

His new CYW is great. She is experienced and has kept routines that T’s previous CYW used.

T’s teacher’s extra homework is making a positive difference. It’s part of our evening and weekend routine and we see a confidence for academics developing in T.

The school was also able to fast track an OT assessment for T to help identify the cause of his disruptive behaviors – such as “digging” and “thrashing” movements and “buzzer sounds” – and to identify strategies to reduce or replace these behaviors.

It’s normally a two-year waitlist but he had his first in-class assessment this week, two months after the request was submitted.

I feel grateful for the school’s effort, because it demonstrates they understand T’s behaviours aren’t “bad” or intentional, but rather because of a disability – including impulse control issues.

Gym class has also been a struggle for T. He is not keen to participate and for his recent report card, his teacher wasn’t able to give him a grade for “Dance,” because she didn’t have any evidence.

During the week before Spring Break that T had to stay home because of a cold, his gym teacher asked if we could complete a dance assignment with T: work with T to create a dance to The Gummy Bear song with different movements that show opposites – e.g. up and down.

I joked with the hubby that it was a fake assignment and the teacher was fucking with us.

It was the last homeschool assignment we had to do with T before Spring Break and we filmed it 8 hours before we woke up to leave for the airport.

While it was not Britney Spears level choreography, T did a super cute job.

After we submitted the video separately to T’s teacher and his gym teacher, his teacher e-mailed to let us know she will suggest to T’s gym teacher that similar future assignments can be completed at home, where T is more comfortable.

My initial reaction was, “Oh God! Please don’t punish us like this!”

But I then realized how amazing it was to have a teacher willing to work within T’s comfort level to maximize his success.

The hubby and I gladly agreed and thanked her for her inclusive and accommodating approach.

On the Sunday before return to school, the hubby worked with T to make two birthday cards for classmates.

His teacher provides a monthly calendar that includes student birthdays as a way to encourage classmates to think about others.

I remember how happy T felt last month when his classmates created cards for him so we reminded T about the importance of paying things forward.

The rainbow cards he created, pictured at the top, were lovely!

This past week, I celebrated my birthday and got my own homemade cards from T. I put them on my home office desk.

I don’t wish for much during birthdays nor need anything other than my loved ones’ happiness.

Although this homemade carrot cake by the hubby was delicious!

T had an amazing return to school after Spring Break. 5 out of 5 great days of following routines, participating in class and completing his work.

That was the best birthday gift I could ask for and I hope his positive momentum continues.

The past week’s spelling test.

Escape Room

“What am I escaping from?” asked the exasperated dad after the resort staff asked if he wanted to try their Escape Room game.

The staff asked another dad, walking quickly with a kid in tow and he asked, “Do I get to escape from this?”

He looked at me with T in one of his hyperactive moments and didn’t even bother asking!

As a parent, especially a parent of a special needs child, you often yearn for escape – especially the last two years.

Whenever we daydreamed about our resort getaway during the pandemic, the hubby and I always said we’d take advantage of the resort childcare services.

But we never used the service, because the truth is, we enjoy having fun with our guy.

As many parents will tell you, it is truly a blessing to experience the world through the wonder-filled eyes of a child.

Despite some hiccups, we had an amazing trip and would’ve been sad to experience any of the moments without T.

The last seven days have been an escape from reality, the grind, stress and responsibilities. I am super thankful for the memories we created.

Some memories were unfortunate, such as the hubby getting a stomach bug that kept him in bed for two days in the middle of our week away.

During those two days, I was a single parent and there were moments that felt more like a chore than a vacation.

On the second day, T was down. He said that he was very sad that his daddy was sick. So I worked hard to take T’s mind off his worries.

We spent an extra long time by the waterpark and pool and we took the resort trolley for a ride to explore the grounds.

During dinner, I watched T stuff his face with spaghetti in meat sauce – he had this for every lunch and dinner – and I felt that inner joy that comes once in a while; that swelling of gratitude that overwhelms my emotions.

I teared up as I stared at my life in front of me: I didn’t need to escape. Thanks to life’s mysterious ways, this wonderful boy found and rescued the hubby and I six years ago.


“I get back up and I do it again. I get back up and I do it again…”

One of my wishes with our vacation is to overfill T’s bucket with happy memories – so he has them during grayer days.

I loved watching T play at the beach, with its soft white powder and clear turquoise water.

The waves were rocky and persistent and made swimming an enjoyable adventure.

For nearly an hour, T jumped and hurled himself fearlessly onto the waves.

Sometimes, he succeeded in jumping over them or into them.

Sometimes, the waves were higher than him and knocked him over.

But he kept getting up again and again – with a big smile and hearty laughter.

I couldn’t help but draw a parallel to life as a special needs parent; of a child with FASD.

The waves keep coming at you every day, even on days when you’re not ready for them.

Let’s not even talk about the waves we all had to endure during this pandemic!

Some days, you ride them. Some days, you even coast wonderfully. Some days, you get knocked over onto your ass.

But you get back up and you do it again.

You learn to surf and ride the crest of the wave. Because it’s worth it for the high and joys of facing this life head on with your child.

The alternative is to stay away from the beach and to miss out on what this beautiful imperfect life has to offer.

“I get back up and I do it again,

I get back up and I do it again,

I get back up and I do it again,

I get back up and I do it, I do it again.”

– “Why Do You Love Me?” by Garbage

I’d be remiss and insincere if I said this trip has been completely relaxing.

T’s had numerous irritable moments – filled with loud outbursts of telling us to “Shut up” when he wasn’t getting his way; often in public and we had to bite our tongue to avoid escalating the situation.

Last night, during one of his outbursts in our room, I had enough and told him to stop using rotten and rude language, because it was ruining the mood of our vacation.

I didn’t like telling him that nor did it feel good to say it, but it needed to be said. Cue the waterworks and crying. I walked away and went to bed.

This morning, T woke up and climbed into bed and snuggled with me for 30 minutes.

After breakfast, we went to the waterpark and played in the wave pool for an hour, splashing and laughing.

At one point, he said, “I love you.”

I smiled and hugged him and said, “I love you” back to him.

Then we went back to our room to change and relax in the air conditioning before lunch.

“I get back up and I do it again. I get back up and I do it again. I get back up and I do it again. I get back up and I do it, I do it again…”

The Boy at the Waterpark

The boy wore a swim shirt like T and zeroed in on him in the wave pool.

I watched with amusement as he tried to get T’s attention. As T bobbed up and down, splashing water, lost in his own world, the boy followed in pursuit.

I felt the parental duty to intervene and finally told T, “The boy wants to play with you!”

During our two and a half days, and counting, in Punta Cana, we spent our mornings at the awesome waterpark at the resort.

T couldn’t stop talking about it for weeks – counting down daily, 39 days from our trip – after we showed him pictures.

There are waterslides of all kinds: some you go down by yourself; some in pairs on inner tubes; some wind around in circles; some are a steep straight drop.

It was paradise for T and we felt thankful for this escape.

It was a joy watching T’s swim skills grow. It had been a while since we took him to the waterpark back home.

We no longer have to stay at the bottom of the slide. We can stand at the end of the pool and let him swim to us.

These seven days are about letting go of the need to worry.

It’s about having cold sweet drinks – within reason; hyperactive child be damned.

T loves these mango slushees.

The wave pool was our last stop in our two hours at the waterpark.

T loved when the waves started and loved swimming at the deep end of the pool. We gave him his space while keeping a close eye.

We first noticed the boy circle T. It became apparent he wanted to play with T.

When he saw T splashing water at us, he began splashing at us too. He also suggested the two of them form a team to “gang up on your dads.”

T laughed big hearty laughs as the two chased us around the pool and splashed at us.

When the lifeguard gave us his warning that he was going to start the waves, everyone had to move to the shallow end.

The boy saw that T was still in his own thoughts in the deep end, so he went to get T. Holding T’s hand, they walked to the shallow end and watched excitedly as the waves started.

We let them play for a while. Then the boy’s dad showed up. It turned out they’re from our same province.

The dad and us decided it was time for lunch and so we asked T to get out.

T said goodbye to the boy. I could tell how much he enjoyed playing with him.

It was nice for the hubby and I to watch T play so nicely with him.

Friendships always weigh on my mind, especially with how much the pandemic has disrupted opportunities for T’s social development.

Social relationships continue to be one of the top challenges for T at school and daycare.

But this week was about letting these worries go for a few days.

After we dried off, T walked back to the wave pool to say goodbye again to his friend, who was no longer there.

As we walked back to our room, T went on about how much fun he had with his new best friend.

Spring Break

The alarm went off at 4 am and T shot out of bed like a cannonball. He was ready to leave for the airport before the hubby and I.

I had been up by 3 am after two hours of sleep. I couldn’t sleep from both excitement and anxiety.

We had booked this family trip to Punta Cana, Dominican Republic back in September.

The thought of a getaway gave me the motivation to get through the ups and downs of the last few months.

When the Omnicron wave hit in December, I gave up hope our trip would happen. Then things started opening up again.

But I didn’t want to celebrate or talk about this trip until our plane landed in fear I’d jinx it from happening.

The week leading up to our trip was a gauntlet. Four busy work days mixed with three medical appointments for my mom and the unexpected curveball of T being sent home with a runny nose and cough Monday morning.

He was asked to stay home from school all week. Not only did it add homeschooling to my already packed week, but the anxiety of missing out on our trip stressed me out.

Thankfully, he was not sick with COVID and his cold went away two days before we left.

Friday was a long travel day and T was off-the-wall excited.

We arrived before dinner and the sun was setting. That didn’t stop T from wanting to squeeze a short swim in before the pool closed.

Having had weeks of frigid Canadian winter weather, jumping into a pool in nothing but a bathing suit was a treat!

The last two days have been wonderfully uneventfully relaxing.

We slept in till 9 am every day, had breakfast, spent the morning at the amazing waterpark in the resort, chilled out and napped in our room after lunch while T played on his Switch, and spent the late afternoon at the beautiful beach.

I didn’t realize how mentally and physically exhausted I was until I didn’t have to think about or do anything other than let go of everything and relax.

I know these seven days will fly by and I am going to focus them on doing absolutely nothing but having fun with our T.