My Life With T

Being Everest

Pretending to be a Siberian husky to my 8-year-old is something I never thought I’d treasure.

Any parent to a young child will likely be familiar with Paw Patrol, a cartoon about six dogs saving the day at Adventure Bay.

T has outgrown this show, but one character has stuck with him: Everest, a Siberian husky that first appeared in Season 2.

A day often doesn’t go by without him asking me, “Papa, let’s play Everest.”

Playing Everest is T’s code for “let’s hang out.”

It often involves pretend play, stuffed pets and building a fort. Frequently, he incorporates things he’s thinking about – like his Aunt’s recent death – into the play.

It could also be simply just us sitting next to each other and talking.

It amuses me to think of T imagining me being a husky. He often corrects me when I break character and says I’m a dog, not a human.

Playing Everest could take place indoors or outdoors at the park or playground.

We live in an old 1960s home and since moving in four years ago, we’re slowly saving up to renovate.

In the meantime, our unfurnished living room is an empty canvas for T to bring to life with his infectious creativity and endless imagination.

I once read that kids don’t ask you to talk about things; instead, they ask you to play with them. And this has always stuck with me.

I know T’s days are filled with ups and downs at school, on the bus and at daycare – and it is often painful for me think of about this.

So I try my best to make time to be Everest, even when I myself feel drained and need time to myself.

I treasure these moments, because I know childhood flies by and it won’t always be like this.

I especially value these moments, because these are the moments in each day when T is at his purest, kindest and joyful best.

It balances the moments when he can be moody or disregulated.

At a recent team building exercise at work, my colleague led a session about the importance of reflecting on the things that bring us joy.

Each person was asked to talk about one thing that brings them joy.

I chose being Everest and when I spoke about for the brief minute I had, I felt joy and gratitude.

As the Paw Patrol would often say, “No job too big, no pup too small…”

The Magical Yet

I didn’t get my driver’s license until my 30s and after failing the final road test twice.

When I finally got it, it was a good reminder that some things that may seem out of reach at first may not always stay that way.

As a parent of a child with FASD, I often think and blog about growth mindset.

The program coordinator at SNAP, which the hubby, T and I are participating in this Spring, shared a great picture book called “The Magical Yet” that speaks about growth mindset.

It reminds me to focus on effort not perfection, on the long term not a moment in time, and on growing not being static.

Just because you can’t do it yet, doesn’t mean you can’t one day.

I’m also a pragmatist. For me, it’s important to temper this message with the reality that there are many things that each of us will simply not able to be good at – neurodiverse or not – and that’s ok.

We tell T the most important thing to do is to have an open mind, give everything a good try, and have fun.

For me, cooking was something I was never good at growing up but I now enjoy as a hobby and therapy – and it’s been fun to grow my skills in this area.

Mapo tofu is one my fave dishes to make. Seemed hard before but hooray for online videos.

For T, participation in school is often a challenge.

Thanks to support from his CYW, and solid effort from T himself, he’s made positive gains this year.

In his daily communications book, we now often see updates about him raising his hand.

Last Thursday, our long weekend got off to a great start when his CYW texted us a heartwarming video of him in dance class.

She said that dance may be in his future and based on how awesome he was, she may be on to something!

I feel proud about the gains he’s making with reading, printing, and math.

Two and even three digit addition, with carrying, seemed daunting to try with him a year ago.

T has also shown more interest in drawing – and I love how he sits quietly by the dining table with his sketchpad while I make dinner.

Reminds me of how I entertained myself as a kid on Friday evenings while Pa worked.

Ocean Spray did not pay for this post. I was just trying to take a discrete photo. 😆

I love seeing the greater detail in his art and more importantly, him having fun with it.

When we have our challenging moments with T, I remind myself about his many gains and to focus on the magical yet.

Fighting Spirit

Body, mind, spirit. They are all connected and nourishing them means a stronger you.

Self care is as essential as oxygen to daily life as a parent of a child with FASD.

Last fall and the first few weeks of the new year drained my batteries and emptied my reserves.

I did not have the time nor energy to apply my go-to recharge strategies, such as exercise.

Every adversity in life passes then provides stillness for reflection and recalibration.

The recent losses in our family provided an important wake-up call about what truly matters and to nourish your body, mind and spirit.

I’ve always been mindful of my diet and exercise, and this year, the hubby’s come onboard the health train too.

The good news, as we’re finding, is it takes just a few tweaks to start seeing and feeling gains.

A Healthy Start to the Day

I got the hubby to switch to oatmeal with me – cutting out sugary cereal.

I bought ground flax seed and hemp seed from the bulk store and add a spoonful of joylessness to each breakfast.

We match this high-fiber meal with yogurt and banana – and twice a week, an added treat of smoked salmon.

Cut Back But Not Cut Out Carbs

We love rice and pasta so it’s not realistic to cut them out completely but we do carb less meals every other day.

We’ve been using the Air Fryer, a Christmas gift from my cousin, which helps increase protein-rich meals and reduce time for cleanup.

Make Better Decisions About Food

I do the groceries, so I decide what comes home.

With the hubby’s buy-in, I cut out our one weekly treat (candy or pop for him; chips for me). We also cut out juice and increased milk (I drink sugar free soy milk).

Maximizing Sleep and Outdoor Time

I’m a stickler for 8-9 hours of sleep – and 9-10 for T – and the hubby is making more effort to sleep more than his usual 6-7 hours.

Getting fresh air is important. We enjoyed a nice Spring walk with my family at Port Credit on Easter Sunday (above).

Exercise, Exercise, Exercise

I struggled a lot in the fall, because I could not find time or energy to go to the gym, as my late sister, through no fault of her own, kept me up at night as she struggled with declining health.

I try to alternate between cardio and weights every other day – with one rest day a week – as a healthy heart and body are important, especially now that I’m in my 40s.

Exercising regularly is one area I’m still trying to get the hubby to commit to, but he’ll get there!

Easter is about egg hunts and bunny fun – it is also about renewal and resilience.

T woke up on Sunday to find a surprise from the Easter Bunny. I love that he still believes in this.

We then had lunch at my Uncle’s home – and my Aunt made grilled lambchops; always a treat!

We then went for a walk at Port Credit lakeshore – and the fresh air and sunshine were soul soothing.

Since we made the few changes to our diet, fitness and sleep routines, the hubby’s reached 35% of his weight loss goal and I feel mostly energized again.

The daily life of a special needs parents can batter you down, so it is especially important for me to take care of my health, as I want to be as available and present for T as possible.

We’ve also used the recent changes as an opportunity to remind T of the importance of making healthy decisions and teamwork.

Life with T often provides humorous reminders about staying grounded and not to take things too seriously.

When I recently praised the hubby after a recent weigh in, I asked T if he was proud of Daddy.

T said, “Not yet, he’s still fat!”

But his warm smile told us otherwise.

After a long winter, the flowers are ready to emerge and bloom under the sun once again.

A Lego bunny for Easter that the hubby and I worked on, with some help from T.

Sorry

The best way to apologize is through changed behaviour.

I reflected on this nugget of wisdom after last week’s session of SNAP.

The hubby, T and I are halfway through the SNAP program and it’s been great so far.

We’re learning behaviour intervention and co-regulation strategies and while it’s never perfect, we’re applying them with noticeable gains.

Last week’s session for the boys’ group was about apologizing – which T struggles with as he sometimes does not correlate his actions with the effect they cause.

As we look ahead to Easter weekend – a time to often reflect on forgiveness – I’d like to share three reflections about the word “sorry.”

T’s recent “Code Mission” homework from the SNAP program.

I’ve learned that changed behaviour is the best way to say sorry

We work hard to remind T to say sorry when he’s done something to cause hurt to others and that the best way to say sorry is to not do it again.

We keep in mind that learning from mistakes and understanding consequences is often hard for kids with FASD.

T is good at pointing out a perceived fault in others but often doesn’t recognize the same in himself.

It’s as frustrating as it sounds – and there are lots of Groundhog Day-like conversations – but we know it’s his brain. And we’re working on it.

Recently, the hubby and I are struggling with bad language. T started to drop f-bombs at home and daycare.

I’m pretty sure he picked it up from older kids on the school bus and using it as attention seeking behaviour but it needs to be addressed.

After screaming “F-you” to the hubby mid-last week, we grounded him from his tablet for the rest of the week.

And yes, it’s as much of a punishment for us as it is for him too!

Madonna’s “Sorry” from her 2005 album “Confessions on a Dancefloor” ruminates on empty apologies.

I’ve learned to stop saying sorry for my child’s disability.

Last fall, I received a call from T’s teacher who let me know that T had been talking rudely at the rotating support staff that work with him.

I quickly apologized and said I’d talk to him.

But when I reflected on the incident, I came to the conclusion that I didn’t need to apologize – because first of all, I wasn’t the one who talked rudely.

Secondly, when I dissected the situation more, T needs structure and routine and he was being helped by different changing faces, often two different people a day, telling him what to do. Of course, he’d get disregulated.

And I said as much when this was discussed at a School Services Team meeting. We were very grateful for the support but the inconsistent structure is counter-productive for kids like T.

If there is a genuine reason for me to apologize, I will – but I refuse to apologize for things caused by T’s disability, unless the school board apologizes for not being more FASD-aware, for not recognizing FASD as an exceptionality and for not doing more to train their staff about FASD.

What I do instead when issues get raised is I validate their point (e.g. Yes, I understand why this may be concerning) but I ask questions and get them to view the context from the perspective of a child with a disability.

I’m not unreasonable but as one of T’s two biggest advocates, I also recognize that kids with FASD are often guilty until proven innocent, which is so unfair and frustrating.

Thankfully, we have a respectful relationship with T’s principal and teacher. We may not see eye to eye on everything but I think they get where we’re coming from.

And there is a good ending to the incidents last Fall. T now has a regular CYW supporting him in the classroom until the end of this year.

I thank God for her on a regular basis, because she has been so good for T.

The 2023 remix of Madonna’s “Sorry” by Toronto DJ Blondish is a lovely take on the song.

I’ve learned to stop being so hard on myself.

I really struggled with T’s disability in the earlier years, especially when I don’t respond with calm in his stormy moments. The guilt ate at me.

In my prayers, I ask that my loved ones and I can be our best versions and that we can forgive ourselves and each other when we are not.

I’m becoming better at forgiving myself for the many moments I’m not my best self.

This Fatherly article writes that “learning how to forgive yourself for big and small errors is important for personal growth. It also teaches your children crucial lessons: how to be vulnerable, how to accept and move on, and how not to be overly critical. And it helps you lead a better life.”

When we recently grounded T, we were clear that we removed the tablet because of his actions and not because of anything else.

While we anticipated it to be a torturous few days, it proved to be surprisingly positive. T entertained himself with his toys and colored an activity book. It was a joy to see him stretch his imagination.

Last Friday, we had a rare dinner together – whereas we usually get T fed first then eat later – and enjoyed a delightful conversation together, without the tablet usually in front of T’s plate.

The weekend was also wonderful and reminded me that every day is a new day and to let go of yesterday and focus on the here and now.

Justin Bieber’s “Sorry” is one of his best songs.

The Spaces in Between

When we randomly came upon a photo of my late sister last weekend, T started to cry.

It caught me by surprise, because while he’s expressed sadness about her death, this was the first time he’s cried.

It was a reminder that grief is a process and that while so much has happened in the last three months, the wounds are fresh.

I recently learned about the concept of liminal space – which is described as “the place a person is in during a transitional period. It’s a gap, and can be physical (like a doorway), emotional (like a divorce) or metaphorical (like a decision).”

These in-between spaces appeared in different ways in my life in recent years: the transitions to and from remote work during the pandemic, Ma’s stroke and recovery, my sister’s cancer diagnosis and recent death.

This Forbes article provides a wonderful overview of liminal space as well as practical tips on how to best navigate through them.

I encourage you to read it but here are a few tips that stood out to me:

Ask “Why Not?” instead of “What If?”
Learn to meditate
Practice acceptance and being present
Remember positive experiences
Focus on what you can control not what you can’t

As a parent of a child with FASD, you often feel like you’re in constant liminal space.

You’re always learning about and facing different challenges brought on by a complex invisible disability that is often misunderstood and comes with so much stigma.

Practicing self care, remembering to be kind with yourself and each other and having a sense of humour are so important to navigate these spaces – as are advocacy and educating yourself and others about FASD.

In general, transitions are hard for individuals with FASD as a result of impairments related to executive functioning.

Transitions are a work in progress for T and effective strategies include providing advance notice and reminders, breaking tasks down into smaller simple steps, giving him time to process the instructions, and being patient.

Now that I think about it, these also provide a great model for how we should live in the liminal spaces that we find ourselves in.

When I learned late last year that my sister’s cancer was essentially terminal, I decided to reduce my personal and professional load, including stepping off work committees not core to my portfolio.

I explained to colleagues, who were understanding, that 2023 was going to be a transition year (I didn’t know the term liminal space yet!) and I want to create space to transition through these changes.

The recent experience with T crying over the photo was a great reminder about who T is at his core – a child who is genuinely kind and full of love – and that he too is going through liminal spaces.

When we allow ourselves to journey through the in-between spaces, we also open ourselves up to the surprises tucked within.

Peeking through the fence during a visit to Riverdale Farm at age 2. Time flies!

Still Young and Not As Restless

I celebrated another lap around the sun the same week an iconic soap opera celebrated its 50th.

More so than ever, I’m most thankful for my family, friends, health, and the opportunities to do things and be with those I love.

While I am lowkey about my birthday, I appreciate when people remember to send a greeting and to those who bring smiles to our days, like my thoughtful teammates who decorated my office!

And to the hubby who gave me my annual night off parenting – with pho for dinner too!

I used the time off to enjoy the latest episode of the excellent Star Trek: Picard.

And yes, T did write, “Happy birthday Ab” on his handmade card.

In fairness, I signed his recent birthday card as, “Love, Ab” – cuz parenting brain does that!

It’s very fitting The Young and the Restless celebrated its 50th anniversary the same day as my birthday because this iconic daytime drama has been a huge part of my life – 32 years to be exact.

I first stumbled upon the show in Grade 4 summer, because there was nothing to do at home by myself and my parents couldn’t afford to put me in camp.

The Lauren-Sheila baby switch storyline got me hooked and the show inspired me to want to be a writer.

I started writing my own soap opera scripts using a 286 computer and Word Perfect 5.1.

My first creation was a show titled “Life is A Library.” Little did I know back in Grade 4 the huge role libraries would play in my life!

I chuckle as I think back to how I wrote 2-3 page episode recaps during the daily journal writing time in school. My Grade 6 teacher’s reactions to my entries are hilarious to read as an adult. 😆

This was fun to look back at on this rainy Saturday.

In Grade 6, I wrote a letter to Y&R headwriter and executive producer, the late and great Bill Bell, asking to join his writing team and attached my grade 6 photo and a sample script. I never heard back. 😂

When I was in high school and through my university years when I studied journalism, I ran one of the first Y&R fan sites. I coded HTML line by line using Notepad. None of the fancy tools like WordPress that we have today!

It was the very first fan-run site to feature original content, such as interviews with actors and sometimes even out-scooped the media. I fondly remember actress Jess Walton (Jill Abbott) sending me a very nice email about the site.

I’d hunt down actors/publicists – this was before social media made celebrities accessible – and call them and they’d be like, “Who is this?” 😆

One of my favourite memories was when I was working as a customer service job in 2001.

The late Kristoff St John (Neil Winters) was doing an appearance at a nearby mall. I ran to catch his appearance during my lunch break, got a few quotes, and it was up on my site that evening.

Getting to meet “Katherine Chancellor” and write about it for my fan site was amazing.

I think back so fondly to these memories and I wonder where did all this free time and where did my hustle go?

Now in my 40s, I still feel young but I don’t feel as restless. I feel comfortable in my skin and have shifted my priorities towards my family.

All the skills and life experiences I’ve made are now used to make life as positive as possible for T.

A fun article about soaps I wrote during an internship at the National Post.

I spent this weekend enjoying the 50th anniversary episodes of Y&R – and enjoyed the trip down memory lane.

When we learned T was moving into our former tiny condo with us, I created livable space by whittling down my boxes of Y&R magazines to just a handful of issues I wanted to keep for warm memories on rainy days like today!

So many happy life experiences and academic, professional and personal opportunities were directly and indirectly made possible because of the love of writing that this show sparked in me.

Happy 50th anniversary, Y&R. May the trials and tribulations of Genoa City continue on for many more decades to come!

Y&R unveiled a new opening this week. Love that Tracey E Bregman (Lauren) leads it. She’ll always be my favourite.

Anahera: the Hidden Angels

While waiting for our flight home, an older man with a cross necklace sat in front of us.

The airport was packed and very noisy and T was overstimulated and stimming (digging hands) and eating his Pringle chips messily.

We told T to stop eating and save the rest for the flight and was met with a snarky “Shut up.”

Then he turned to the woman next to me, who briefly made eye contact with him, and told her to stop looking at him.

She gave a polite laugh and told him she was just looking around.

The poor hubby was flustered and I could tell he was embarrassed.

I knew I had to ride it out, because anything I did or said would be fueling a disregulated child.

“Nature is beauty

Beauty is nature

We are engineers

But who engineered us?”
– Anahera

The older man sitting across from us opened up his bag and told T he wanted to show him something.

T leaned closer as the man took out his own tall tube of Pringles and told him he loved chips too – and T smiled.

The man then looked at the hubby and I and said, “Sometimes, we are given a gift that teaches us about patience and kindness.”

All I could do was smile back – but I thought about these words during the flight on Friday and this weekend.

In moments of chaos – such as the last 30 minutes of our flight when T was acting like a little shit – it’s easy to forget what a blessing he is.

T indeed teaches us much about patience and kindness, on a daily basis, often at the expense of our sanity.

I’m not a religious person but I believe in a Creator – and that there are no coincidences.

I have an incredible story about T’s mother that reinforces this belief – and it’s a story I’ll only share once it’s been shared with T first.

We were always meant to be with this frenetic ball of joy and chaos.

During breakfast today, I looked at T and told him, “Do you know what I love about you?”

Before I could tell him that I love that every day is a new day with him to try again, T interrupted me and said, “That I’m cute, funny and smart.”

Anahera means “Angel” and is a name of Maori origin. It’s also the name of one of my favorite trance songs – a guaranteed pick-me-up – and I listened to it during our flight home to re-centre myself.

Swimming with Dolphins

One chatty mammal met another chatty mammal during a delightful afternoon in the water.

The excursion van picked us up late afternoon and took us for a short drive through downtown Cancun and dropped us off at the marina.

We put on lifejackets and were escorted down the dock to where the dolphins were.

T was very anxious and scared at first. But once he got into the water, he warmed up and let the dolphins approach him.

The staff were excellent and T followed their instructions closely.

He laughed heartily as the dolphins splashed water at us with their fins and tails and he had the most endearing smile as they swam up to him and allowed T to press his cheeks against theirs.

We enjoyed letting the dolphins circle us. T gently petted them, carefully following the instructions to not pet them on their faces.

We then did a “stunt” with them, letting them come up behind us and lift us up by our feet.

T was very hesitant at first but warmed up to the idea. He swam out by himself and waited patiently for the dolphins to lift him up.

Look at how high he went!

We were so amazed and while T would not admit it out loud, the look on his face as he swam back to the dock told us he felt very proud.

T got to do an extra activity, the dorsal swim (below), and went for a short ride by hanging onto the dolphin’s fin.

I’m tempted to share the full photo because the look of sheer joy on his face was heartmelting.

You’ll just have to take my word for it.

This has been an unforgettable family vacation – and one that is coming to an end when he head home tomorrow afternoon.

Despite the few hair-raising meltdowns T had, I am very thankful for the time away and together – and for the wonderful memories we’ll treasure forever.

Above the Clouds

We’re spending March Break with T in Cancun and the wait has been so worth it.

The past few months have been very challenging and knowing this family trip to Mexico was in the distance gave us the motivation to hang on.

The hubby and I are part of a support group for caregivers of kids with FASD and a recent guest shared this video by life coach Mel Merritt on self care: Life has shitty moments and one way to get through them is to focus on the good stuff.

I know many will find her advice simplistic and idealistic. Viewing it as an FASD parent, I think that metaphorical jug containing the zest of life is missing cracks and leaks.

Nonetheless, the video resonated, because that’s always been my approach as T’s parents.

We knew at an early age life was going to be ups and downs.

So we do our best to balance life with moments and experiences that bring us joy, whether they are smaller scale, like our daily walks or play time or larger scale treats, like a family trip.

Because life with T is always a balancing act.

When we arrived at the resort, T was tired and disregulated, bouncing a water bottle on the ground repeatedly during check in.

After repeatedly telling him to stop, I took the water bottle from him, which led to an outburst.

“You are so stupid!” He yelled very loudly, startling parents nearby who all turned to look at us. T kept going. “You suck! And you ruined my day!”

I tried to apply the co-regulation skills I learned from the SNAP program.

Counting backwards from 1,000 – they suggest 10 – I repeatedly told myself that going to prison for 30 years was not worth the 30 seconds of satisfaction I’d get from strangling him.

But like all explosive moments with our child, they pass – and I was not going to let this shitty moment muck up our trip.

And it’s been a blissful two days so far.

The amenities at the resort are amazing, including a waterpark for kids, which T has loved playing at.

I got in a nice hour at the gym by myself on Saturday night followed by a nice family meal at a Japanese restaurant. This tapioca dessert, with crème brûlée cracklings, was so good.

T and I spent this afternoon at the indoor trampoline – where he played very nicely with two boys for over two hours.

It was so heartwarming to see him have a great time – being a kid, free of the challenges from the last few weeks and months.

As he bounced high up into the air, I couldn’t help but think T was soaring up into the clouds in his imagination, as he often does.

I allowed myself to truly savour the moment, guilt free – because we all deserve to rise above the clouds from time to time.

Above the clouds, the sun is always shining.

A Series of Suddenlies

Life flashes by in a series of suddenlies.

Suddenly, the hubby and I are university students randomly meeting on a dance floor then start to date on March 8, 2003.

Suddenly, we’re moving in together then getting married. Suddenly, we have a little boy then navigating the horrors of a pandemic.

It’s impossible to capture all the memories from the last 20 years with someone I’ve spent nearly half my life with – and the cherished family and friends who were part of them.

So instead, for our anniversary today, I posted 20 photos, 1 photo highlighting each year.

It’s interesting to remember that there was a life before T – because, as a parent, you genuinely do forget you once had a life! 😂

A life before the words FASD became part of our vocabulary – and that despite the challenges, our lives are now richer thanks to T.

To be reminded that through all the highs and lows, we can count on each other – and that together, we are more.

And the steps the hubby and I took individually and together before we became T’s parents will help us through this rollercoaster life with T.

And here are a few highlights from our life of suddenlies:

2003 – Our first Pride together. I sort of miss staying out late and buying sausages for $3 at 3 am from the street corner and covering it with lots of pickles – or going for cheap Chinatown eats at 4 am. If I did that now, I’d need a week to recover.

2004 – We celebrated graduating from university with our first trip together – and tandem skydiving in Cuba. I made the embarrassing mistake of asking the woman in the pink if she was the mother helping out in the office. She told me I was jumping off the plane with her. 😂 Good thing she didn’t untether me up in the sky.

2008 – Our first overseas trip together – visiting Beijing, Hong Kong and Philippines. The Great Wall of China was amazing. My Pa, who is a proud Chinese, passed away two months before our trip. He would’ve enjoyed hearing about our trip.

2010 – Our first time visiting Europe – stopping by Paris and Switzerland. Ma came with us! 🙂 This was on a tram traveling up the breathtaking Alps to Jungfraujoch, 8,000 feet above sea level.

2012 – An unforgettable 14 days in India.

2013 – Atop the Eiffel Tower – after touring the UK with the hubby’s parents. This is one of my favourite photos.

2015 – Visiting amazing Macchu Piccu in Peru.

2016 – And the year the little guy entered our lives – and the year we started to age rapidly. 😆😂

And the story continues…

Together We Are More

I recently thought about a bedtime story called “The Bundle of Sticks” that Pa used to tell me.

As this Aesop’s Fable goes, an old man gathers his 20 dysfunctional sons as he nears his death.

He gives them each a stick and asks them to break it – and they each do so with ease.

Then he puts 20 sticks together and asks each son to take a turn at breaking the bundle – and they are unable to do so.

And so, the old man imparts an important lesson about unity.

Blogger Vickie Rubin recently wrote about the trick that keeps her marriage working – and for my family, and raising a child with FASD, it’s about making or breaking it together.

The hubby, T and I recently started a 13-week program called SNAP.

So what does SNAP stand for?

It’s not the Bend and Snap, unfortunately.

It’s not this either.

SNAP stands for Stop Now And Plan and it is “an evidence-based cognitive behavioural model that provides a framework for teaching children struggling with behaviour issues, and their parents, effective emotional regulation, self-control and problem-solving skills.”

It’s a referral-based program with a long waitlist – we waited a year – and we are so thankful for the recommendation from Surrey Place.

Taking place once a week, T is in a play and learn based group with three similarly-aged kids while the hubby and I are with three other couples.

The weekly subjects covered hit on so many skills that we want T to learn – including emotional regulation, playing in groups and even covers topics such as bullying.

Three weeks in, I’ve been enjoying the sessions; it’s so refreshing to meet other parents, in person, who just get it with zero judgment.

We get home late in the evening, so we made a few changes to our routine – we get takeout, no reading homework, no bath – so T gets to bed at the same time without meltdowns.

Yes, it is as time consuming as it sounds and I need something else on my plate like I need another gray hair – but I think it will be worth our time.

During a recent drive home from SNAP, I thought back to 2011 when the hubby and I took a multi-week course called Papas and Daddies To Be, offered by a 2SLGBTQ+ organization.

It was a journey, an investment of time, and so worth it as it helped inform our adoption journey.

I’m hopeful for a similar experience with SNAP.

It’s also nice that T’s CYW is trained in SNAP and uses it at school. We connected her and the SNAP team together for mutual goal setting.

Life with a child with FASD is filled with ups and downs – and there are days where I do feel like I will snap from how hard it is.

What keeps me together is remembering that the hubby, T and I are in this together – through thick and thin.

Individually, we’re thin and susceptible to snapping – but together, we are more; thicker and stronger.

We support each other through the lows and we celebrate together our many highs.

Recently, during bedtime, the hubby was trying to get T to finish showering, one of his favourite activities that he could spend forever doing.

Cue the screaming fit.

I reminded the hubby about SNAP. “Count to ten and take deep breaths,” I said, with perhaps a bit of playful sarcasm.

“Replace those hot thoughts with cool thoughts. He’s acting this way because he’s having fun. He’s not trying to piss you off. Stop Now and Plan.”

The hubby, already quite irritated, stared at me with quite the look and said, “Fuck off.”

Did I mention having a sense of humour also helps?

The Skin We’re In

Being thick skinned takes work, whether it comes to parenting or Air Frying pork belly.

When I cook, one of my self care routines, I find parallels with parenting a child with FASD.

My cousin gifted us an Air Fryer for Christmas and it’s been amazing to make recipes on my bucket list, most recently roasted pork belly.

I got a 1.5 pound cut of pork belly, with good distribution of skin, fat and meat.

I boiled the meat for 15 minutes to remove the impurities then rinsed it under cold water.

I then poked holes on the skin using a fork – you can use a toothpick or skewer – which allows for bubbly crispy skin.

Don’t poke into the meat or the meat juice will spoil the skin crisping.

For the skin to crisp up, it’s important to dry up the skin.

I brushed it with vinegar then salted generously to draw out the moisture.

I put it in the fridge uncovered for 48 hours, taking it out after a day to pat the skin dry and to score the meat in one inch squares; then seasoned the meat with five spice powder.

When I was ready to air fry, I wrapped the sides of the meat in foil then sprinkled more salt on top.

I roasted it for 40 minutes in 390 degrees Celsius.

And voila! It exceeded my expectations – the skin was so crispy and the meat was juicy.

Being a parent of a child with FASD can feel like a pig being slaughtered and roasted.

Many parents of kids with FASD often share challenges with verbal aggression – and the hubby and I are certainly not immune to it.

“Shut up” is T’s go-to phrase when he doesn’t get his way or when he’s refusing to comply. When he’s very disregulated, he will hurl threats or hurtful comments, such as “I hate you” or “you’re the worst.”

I’ve learned to be better at not taking it personally – and to reframe his behaviour as symptoms of his disability: impulsivity (says the first thing on his mind) combined with difficulty regulating his emotions (says the thing to inflict the most hurt).

I came across the very useful QTIP acronym on Jeff Noble’s FASD Caregivers Success Group.

But I’m only human. No matter how thick skinned I am, things get to me if I am consistently poked at – like pork belly – and it gets to me, because I parent with my heart wide open to T.

I feel horrible when I don’t react with calm and grace in moments I feel like I’m submerged in boiling water.

I’ve learned to be less bothered when the comments are directed at me. Because I know that in one moment, T could be screaming I’m the worst parent because I’m ending his bath then moments later, we’re snuggling with a book in bed and he tells me he loves me.

What bothers me are the reaction – said out loud and unsaid through body language – by people who see T at his worst.

I remember one family member remarking on T after he was so awesome throughout my sister’s funeral service. Instead of attributing it to maybe, just maybe, he’s a good kid, the comment was, “Did he take his medication?”

People are quick to judge and to label kids into black and white buckets based on disregulated moments and these overshadow the moments when T is good, kind, caring, funny, regulated, compliant and empathetic.

But unlike roasted pork belly, our skin and spirit do toughen up – and I choose to focus on the positive and the things I can control: advocating for T, raising awareness about FASD and increasing understanding, one heart and mind at a time.

Unlike roasted pork, I don’t want life as a special needs parent to make my exterior hard, coarse, crisped – and jaded and cynical.

So it means to not dwell on the small stuff and to brush myself not with vinegar and salt but with the good stuff that fill up my heart and spirit.

And that includes indulging in my cooking adventures.

Chosen Family

Holidays provide time for rest and reflection.

Family Day is a special holiday, because it comes after Valentines and the anniversary of finalizing T’s adoption in court.

When T was a toddler, we loved reading Todd Parr’s Family Book, which spoke about families in all forms – nuclear, single parent or multi-generational households, same sex parents, adoption, bereaved families.

One thing that’s clearer as I get older is the importance of chosen family.

Family is not just defined by blood. It’s about bonds formed by choice over time, respect and love.

Last night, we enjoyed hotpot at a friend’s home – and the shared cooking and conversation felt wonderful and soothing.

T enjoyed playing with our friends’ teenaged kids, who were once much younger than T was.

As a parent of a child with FASD, quiet free time is a luxury and my circle – my chosen family – has tightened the last few years.

In many cases, the pandemic has created distance and in some cases, I decided to not spend my energy on fairweather relationships.

I am very thankful for the relationships that have endured through my parenting journey.

And I wish for T to be blessed, as I am, with his own chosen family as he moves through life – relationships that are respectful, soul-filling, lasting and that help keep him on the right path.

Stand Under My Umbrella

Six years ago today, also a Wednesday, T, the hubby and I became a forever family.

In many ways, it feels like a lifetime ago when our adoption was finalized in court – and in other ways, I think with awe, “Has it been only six years?!”

So many moments have happened since – joyous highs and crushing lows. But yet, like T, every day is a new day and we keep chugging along.

I love that this anniversary always falls after Valentines Day and before Family Day, because it is symbolic of what love and family mean to me.

Shining Together

This Sunday was Super Bowl Day and I was excited about Rihanna’s halftime show.

The hubby and I loved her music, as it played in the clubs when we started dating in our 20s.

I went on a binge of rediscovering her music last week – hits after hits – and it was fun introducing them to T during our drive to swim class.

After his lessons, we went to a birthday party for the daughter of the hubby’s friend and colleague.

It was the first party T got invited to in the last three years – and it reminded me of the guilt I mildly feel for not having yet done a birthday party for T, with the pandemic partly to blame.

T made a wonderful card for the birthday girl.

The party was hosted at a small art studio for kids, as you can see by the awesome creations below.

We regrettably arrived late and the kids had already started a group painting activity.

We encouraged T to participate, but the combination of arriving mid activity and him not knowing anyone other than the birthday girl made him feel reluctant and shy.

So he stayed outside the room and looked around the Studio. I wasn’t fussed but the hubby felt embarrassed and flustered.

The Studio staff were empathetic and offered to do an activity with T to pour small plastic balls into a deflated balloon to create a hand fidget toy.

Afterwards, the kids gathered to eat pizza. He was still reluctant to join, so we sat and ate outside.

Eventually, T warmed up and went inside – just in time for ice cream cake!

“When the sun shines, we shine together
Told you I’ll be here forever
Said I’ll always be your friend
Took an oath, I’ma stick it out ’til the end
Now that it’s raining more than ever
Know that we’ll still have each other
You can stand under my umbrella.”
– Rihanna, “Umbrella”

As an adult, I can find social events hard, so I can relate with a kid, FASD or not, navigating a party where he did not know anyone and he arrived late.

So you know what, T did awesome.

I loved when the host asked who wanted more cake and T said out loud, “(Birthday girl) should get a big piece because it’s her birthday.”

T brought Moo Moo with him and Moo Moo got to meet a fellow farm animal at the party! 😊

After the cake, it was piñata time. The kids lined up to each take a turn swinging at Olaf the snowman.

T didn’t want to line up and we could tell he felt anxious.

When the piñata broke and the kids grabbed the candy, T started tearing up. Thankfully, the host parent bundled up a bag and gave it to him.

We stood with T and stayed calm to help him calm down – and eventually he did.

And just like that, the party was over. As we exited the Studio, T pointed out his gift and card to the birthday girl.

The party experience, its ups and downs, sums up how I feel about parenting on this forever family day.

When the sun shines, we shine together. Told T we’ll be here forever. Said we’ll always be his friend. Took an oath, we’re gonna stick it out ’til the end. When it’s raining more than ever. Know that we’ll still have each other. He can stand under our umbrella.

Sweet Dreams

Time flies. It’s hard to believe but our little guy turned lucky number 8 last weekend.

T had been counting down excitedly for weeks. But his birthday week got off to a rough start.

Last Monday, T woke up around midnight and threw up. A lot. Then woke up every hour after to throw up even more.

We kept him home for two days. It turned out a stomach bug went around his class, as his teacher and classmates also caught it.

Thankfully, he was fine by the weekend.

We did a Sonic the Hedgehog theme birthday, with matching balloon colours.

Blue for Sonic, orange for Tails, Red for Knuckles.

The hubby baked a homemade Sonic cake with cake toppers purchased online.

And the cake was yum!

T really wanted a party, but with my sister’s funeral taking all our energy, we didn’t have time to plan one. We made a pledge to do one, his first-ever party, for his 9th birthday next year.

But it was wonderful that his CYW gave him a gift and two classmates each made him a card.

My good friend dropped off a book for T, another Oliver Jeffers book, which has become an annual tradition. Our family loves his books.

Instead of a party, we took T to Niagara for fun at the Fallsview waterpark.

The last time we were there was to celebrate T’s 5th birthday, with his foster parents and brother. Little did we know that a few weeks later, the world would forever change with the pandemic.

It was nice watching T have fun at the waterpark. What a difference three years makes. We didn’t need to supervise him closely this time.

We really needed this weekend as much as T did and it was a welcomed change from the challenging last while.

You know you’re exhausted when you sign a birthday card for your son using your first name instead of “Papa.” 😆

In Chinese culture, 8 is considered a lucky number, because it is often associated with wealth.

During the drive to and from Niagara, we played “Sweet Dreams (Are Made of This)” by Eurythmics.

I’m not sure where T first heard this song but it’s his current favorite and on repeat in the car. He calls it the “seven seas song.”

Growing up, we often heard our parents share their dreams. It often had to do with us being a doctor or having a well-paying job – because wealth was often associated with success and a good life.

As a grown up and a parent – and I’m not just viewing this through the lens of special needs – my dream for T is more simple and open ended.

In my prayers, I pray for T to grow up happy, healthy, self sufficient, to do something he loves, to have lasting friendships and relationships, to stay out of trouble, and to contribute light to this world.

How he does that – we’re open to all possibilities.

As life with T teaches us, there is no linear nor singular path to success.

Sweet dreams are not made of just this one thing.

As T noted while he was playing with his golden 8 balloon, 8 turned sideways is infinity.

And who am I to disagree?

Family Traditions

Time spent and memories made with our loved ones are what really count in the end.

When my sister learned her chemotherapy was not working, it was sad watching her come to terms with her time left.

She said the saddest thing was not getting to spend more time with family and friends.

Shortly after her funeral, COVID hit our family – the hubby got the brunt of it – and I felt a tad stressed.

T’s teacher sent an assignment home on the weekend – asking us to work with him to complete a worksheet about family traditions ahead of the class talking about them the coming week.

While I didn’t need one more thing to do, I loved her accommodating approach for T.

I first explained what family traditions are then asked T to write one word and draw one photo to represent one of our traditions in each of the six boxes on the worksheet.

I let T take the lead and it was touching to see the six traditions he chose: Christmas, Easter, pizza, camping, beach and “happy birthday.”

Family traditions are important to me, because these moments create lasting bonds and memories.

They could be big events like a family vacation and more often than not, they are the simpler pleasures – like a walk or hike together, summer swimming or Friday night takeout.

Traditions represent routines and structure and predictability are so important for kids with FASD.

Traditions give us something to look forward to. Knowing milestones that lie ahead in 2023 is helping me get through the challenging past while.

Working on the traditions assignment with T helped me get through hard days in January. I enjoyed the trip down memory lane and it was touching these traditions mean something to him.

Christmas

T’s favourite holiday and the one he looks most forward to is Christmas. He can roleplay Christmas and Santa any month of the year!

Pizza

T is a very picky eater so when he finds something with protein (meat) on it, we celebrate. We have at least one pizza night a week.

Beach

We are fortunate to be able to go on family vacations and we try to do something, nearby or further, once a year. As T is younger, we do family friendly beach vacations. As he gets older, we hope to explore other parts of the world together.

Camping

Walking through the campsite at Algonquin at age 2.

One of the best things about parenting is introducing your traditions to your children so it becomes their tradition – like camping. T went on his first camping trip at 18 months with us and it’s now a summer tradition.

Easter

Dyeing eggs during the first pandemic Spring in 2020.

I was shocked that Halloween didn’t end up on T’s traditions worksheet, but I was amused he chose Easter. Come to think of it, he always enjoys the egg hunts each year.

Happy Birthday

Celebrating T’s second birthday, our first birthday with him, at Ma’s.

Birthdays are up there with Christmas as something T looks forward to every year. This year, T wanted to invite classmates to our house and we’re not comfortable yet to do a party. But we told him we will try for his 9th birthday next year – as a new tradition to look forward to!

A few days into the following school week, we got a lovely text from his CYW.

She told us that T did a great job presenting his worksheet to the class – and that he spoke clearly and confidently.

We know public speaking is something T doesn’t normally enjoy, so we took this as a win and were so proud of him.

To celebrate, we ordered pizza for dinner.

All That Matters

Our family’s recent and first experience with COVID reminded me what’s truly important in life.

Yes, the dreaded COVID finally hit our family and I was a single parent for nearly two weeks.

Shortly after my sister’s funeral during the holidays, our family was longing for respite. No more bad news, please.

A few days later, the hubby came down with cold and flu symptoms and a fever – and a test confirmed he had COVID.

While I had no symptoms, I tested the next day to be safe. It showed a faint second line, meaning I had it too.

We kept T home until we were sure he had no symptoms and we tested him before we sent him back to school.

A lifetime of watching zombie apocalypse movies prepped me for this moment.

We immediately isolated the hubby in our bedroom and I slept in our guest room. We all masked indoors and I kept my interaction with T to a minimum until I tested negative two days after my positive test.

Still exhausted and processing from my sister’s funeral, I was extra sensitive of death and a part of me worried about the worst case scenario for the hubby.

I went into caregiver mode – sending reminders to the hubby to drink water and medicine, waking up at night to remind him to drink water, to take his temperature and to make sure he didn’t have breathing issues.

The hardest part for me was for 13 straight days, I did all of the hubby’s tasks, like dropping T off at school, doing T’s bath, and getting no breaks on the weekends.

It was exhausting! But you know what, I enjoyed the extra bonding time with T. Getting to play with him, see his morning routine and friends at school, meeting his CYW.

It reinforced to me about all that matters in life – our loved ones.

It reminded me about the things we often take for granted – second nature routines – like all the tasks my hubby does that I never worry about.

T was so good and empathetic. He was and still is a needy child, but I also saw his appreciation and care for his Daddy and I.

And to the single parents – some of whom are bloggers I follow and admire – kudos to you for doing this every single day!

Last Friday, I took a solo lunch break at our local mall’s food court. The hubby finally tested negative and I treated myself to this hearty bowl of ramen with chicken karage on the side.

Later that afternoon, as I drove T home from daycare, I shared the happy news that daddy was finally free of COVID.

T let out the loudest cheer and scream and almost bounced out of his seat.

When we drove up the driveway, he could not have ran out of the car fast enough.

His daddy was waiting at the door and after not hugging or much interaction for 13 days, they gave each other a long tight hug that seemed to last for a lifetime.

The Wedding

We took our 7-year-old to his first wedding this past weekend.

Well, at least the first wedding he’ll remember. He attended his first and only wedding in 2016, a friend’s destination wedding, when he was 1.

As with all social events, we had some initial apprehension of how T will be.

But we believe it’s good to let T experience these life moments as they help him build his social skills and broaden his awareness of the world.

We briefed him about what to expect and we’ve also read books in the past about weddings, such as the fabulous Worm Loves Worm, a book that spoke about marriage of all forms.

It was a beautiful wedding held at the charming Old Mill Inn and it brought back fun memories.

The hubby and I attended our first wedding as a couple there back in 2004 and we’ve attended two other weddings there since.

We had planned to sit at the back, in case we needed to duck out to give T a break, but we spotted friends in the third row, so T got a great view of the ceremony.

He sat so well through the sweet ceremony. But T being T, muttered out loud when a baby started crying, “Oh my God, that baby is so annoying.”

I had to bite my tongue from laughing.

A lunch reception followed and we sat with our friends and their two daughters.

I loved how our hosts thought about each child by preparing a loot bag of things to help entertain them – such as fidget poppers and games.

The key to social outings with kids like T is to prep him ahead of time of what to expect, to not sweat the small stuff, and to not force him to do anything he doesn’t want, like taking photos.

He gets very cranky when we ask him to take photos when he’s not in the mood.

But it was wonderful when my friend’s daughters invited him to take photos together at the photo booth, which had many fun props.

I cherish these photos as his smile, as with any photo he decides to take, is pure and genuine.

The sweetness of the event was a welcomed contrast to the last few weeks of the new year – and to get dressed up and to celebrate a happy joyous occasion was a blessing.

Sharing Our Son’s FASD Diagnosis with Him

There are crucial conversations in life that stick out vividly long after they’ve happened.

Coming out when I was 14; telling my parents I was moving out; our wedding vows; the adoption worker telling us we were matched with T.

Over the Christmas break, I had two more: one that was planned and another that was unexpected.

A few days before New Years, I drove to my mom’s to deliver the news my sister had suddenly passed away that morning.

That was one of the hardest things I’ve ever had to do.

In comparison, sharing T’s diagnosis of fetal alcohol spectrum disorder (FASD) two afternoons before seemed like a walk in the park.

The anticipation was daunting.

We had wanted to tell him in the summer vacation before the new school year started but we decided to keep summer light.

We were then going to tell him in the fall, but my sister’s cancer took a turn for the worse and she moved in with us.

We decided Christmas break was going to be it – no more delays.

My sister was admitted to the hospital on Christmas Day, so it created some privacy in our home to share the news with T two days later.

It was the late afternoon, after a very relaxed day at home of play, play and more play.

I was resting in our room, when the hubby came in to lie down too – and not soon after, T came in and sandwiched himself right between us.

So much for my nap, I thought.

Then without a heads up to me, the hubby just went right into it.

He asked T if he knew what alcohol was. And T said he did not.

He briefly explained what it was and said that his mom had drank while he was in her tummy.

Then he asked T if he remembered being taken to Surrey Place a year ago to meet with the doctor (psychologist) to play games and answer questions.

T said he did and the hubby explained it was a series of tests that helped us learn that T had FASD.

I then said that a lot of people and kids have FASD – and it’s what happens when the baby’s brain is exposed to alcohol while they’re in the tummy.

We said that for him, FASD means he is hyperactive and has a hard time sitting still.

As I said this, he was squirming and doing his “fish worm dance” on the bed.

I explained that it also means he has a hard time with controlling his impulses.

As I said this, he was kicking me gently on my leg.

I also said that he has big emotions and FASD means that he has a hard time controlling those big emotions at times.

Lastly, I said FASD also means he has a hard time focusing at times – like doing his work in the noisy and busy classroom.

Funnily, he then went down to get a banana as I was in the middle of explaining this.

We told T that FASD is very common and that lots of people have it.

He then asked if we had it.

After we said no, he then asked if his cousin A has it and if that’s why she jumps around uncontrollably (stims) sometimes.

We explained that she has autism and that while it is different from FASD, there are a lot of similar things to think about.

He asked if that’s why he digs his hands and we said, yes, it’s probably related to him stimming, in the same way his cousin jumps around.

We told him FASD is nothing to be embarrassed about and he immediately responded that he’s not embarrassed.

I love how he said that so quickly and with such conviction.

We told him he has so many strengths – he’s bright, caring, funny, curious – and that these strengths will help him overcome the challenging parts of FASD.

We said that FASD is what makes him him and we are so lucky to be a family.

We ended off by saying that it’s a lot of info we just shared with him and that we will unpack it together because we’re a team and that he can ask us questions or share his thoughts anytime he wants.

To be honest, it was not quite how I imagined it going. I had it so planned and scripted it my head and this just felt so spontaneous and sloppy.

On the one hand, I kinda wished the hubby gave me a heads up he was going to launch into it.

On the other hand, it felt so cathartic to finally get it out there.

There is so much to unpack over the next few weeks, months and years for T and with T – but the seed has been planted.

I genuinely believe this will benefit him in the long run and help him understand his day to day and his interactions with the world.

During the latter half of our conversation, he came to give us both a big hug and told us he loved us.

When I asked for another hug, he told me to go away because “your breath stinks!”

Yup, T is T and we wouldn’t have him any other way.

Marshmallow Halo

Processing and understanding death is hard for kids. Sometimes, stuffed animals can help.

T’s Auntie’s – my sister’s – death a few days after Christmas was sudden and despite the unexpectedness, T is doing ok.

I continue to check in with him every day to see how he’s doing.

Kids often don’t tell you how they’re feeling, instead they show you; they don’t tell you they need you, instead they ask you to play with them.

On New Year’s Day, the hubby, T and I took it easy at home. We had been running around for two days getting the funeral organized.

T asked me to play with him. He gathered all of his stuffed toys – his “pets” – into the living room.

What started as a camping trip and roasting marshmallows over a fire spontaneously became a funeral service.

His poor seal – named “Love” – was just minding his own business in the living room when he got picked to be the one to die.

It was interesting to watch T act out what he thought would happen, based on what we’ve described to him – including him digging up a hole to bury Love.

A week later this morning, a few days after the real service, T and I played again. This time, T re-enacted his Auntie’s service to pretty accurate detail.

This week, his pets bid adieu to “Cookie” the whale – who, unlike Love, got a proper casket.

T set up formal seating for the guests.

In a separate room, just like the actual service, T set up a refreshments lounge for guests. The menu included fish. Yes, serving fish at a funeral for a whale – I adore this kid.

T also had a podium for guests to give eulogies – and he asked me to say a few words about Cookie.

He then decided to say a few words. For someone who doesn’t like public speaking, I found this interesting.

The comment that jumped out at me was when he said, “I really loved her a lot” – because he always refers to Cookie using he/him pronouns.

The hubby and I are not experts in grief – nor are we looking to gain more experience! – and we’re doing our best to help process this.

I continue to tell T there is no right or wrong way to feel, think or say how he’s feeling – the important thing is to try not to bottle it in and to let us know at anytime whenever he wants to chat.

I think this roleplay with his pets is healthy, because afterwards, he moves onto the next preferred activity.

The last few days reminded me of many things – one of which is that at his core, T is an incredible, kind, caring and good kid.

After Love the seal was cremated, T placed him on top of his toy garage, high above the ground.

He put one of his stuffed marshmallow toys on Love’s head.

“It’s a golden ring,” he said, “He’s an angel now sitting on a cloud.”