My Life With T

Your Disco Needs You

Our 6 year old’s quirky song of choice made me reflect on how we should live life like a disco ball.

Enjoying music together with T is one thing I cherish in our relationship. For a long time, all he listened to was Queen’s “We Will Rock You.”

I went on a recent binge of Australian pop star Kylie Minogue’s discography, because her joyful music lifts my mood every time.

T zeroed in on “Your Disco Needs You,” a campy single from her 2000 pop masterpiece album “Light Years,” and now asks for it on repeat.

Popular in the 70s, disco is a genre of dance music described as “typified by four-on-the-floor beats, syncopated basslines, string sections, horns, electric piano, synthesizers…”

Basically, it’s upbeat and cheerful.

As we listened to T’s song in the car on loop, I thought about the disco ball and how it radiates light in all directions.

According to this article, the first patent for the disco ball was issued in 1917 by Louis Bernard Woeste who called it the “Myriad Reflector.”

The word “myriad” means countless or extremely great in number.

“How interesting,” I thought, as I watched T, from the rear view mirror, bopping in his car seat.

“So lets dance through all our fears
War is over for a bit
The whole world should be moving
Do your part
Cure a lonely heart.”
– Your Disco Needs You

Then my mind went on a super random tangent, thinking about each of our lives as a glass ball.

At birth, our ball is smooth. The myriad of life experiences we have, good and bad, adds facets towards of our ball, making it resemble a disco ball with each passing day.

I often think about how I’d like to hang onto T’s innocence and wonder as long as I can, because that is the purest form of light.

As individuals, we can choose to bounce the light we receive out into the world or we can trap it within ourselves during the harder moments, much like how a ray of light gets lost in darkness.

Similarly, we can absorb the darkness that comes towards us or let it bounce off. Easier said than done, of course.

T teaches me every day, sometimes through hard moments, to bounce light to others.

He is our disco ball, situated in the middle of the dance floor that is our lives, radiating light (even when he’s driving us insane!).

One common thing said about children with FASD is that every day is a new day for them. It’s a blank slate.

I learn a lot from T about letting things go.

Outdoor pools opened last weekend and they were a life saver last summer. We’ve already gone three of the four days they’ve been open!

Prior to last night’s visit, I was in a frazzled mood, after a day of back-to-back meetings and virtual schooling, with not much of a break.

My head was spinning from all the to-dos for the next day and I could feel myself getting antsy.

But then I thought about my silly disco ball. Do I hold this in, let it fester and mar a fun night out with T – or do I let it bounce off and enjoy the moment ahead of us?

I chose to boogie woogie.

It was a cooler evening, so there was only a handful of people at the pool; we practically had the shallow end to ourselves.

The sky was sunny with sporadic dark clouds. So beams of sunlight came and went.

During one moment near the end of our swim, T was chasing me as we played tag in the pool. Slivers of light pierced through the dark cloud and down onto T, illuminating our disco ball.

I watched him as he smiled, laughed and splashed in the water, enjoying and basking thankfully for this little moment of pure perfection.

Coming Out… Again and Again

I came out in my teen years. Decades later, I am coming out again as a special needs parent.

As the world celebrates Pride Month and the importance of inclusion, love and tolerance, I am thankful for living in a part of the world that is, for the most part, progressive and inclusive.

I came out at 14. I remember how nervous I was and how it took me three weeks to work up the nerve to tell the first person I came out to.

I was very fortunate to have received mostly supportive responses. When I didn’t, I am glad I had the wisdom to walk away.

When I told the pastor of the church that I was attending that I was gay, she suggested that I go see a psychologist.

I was 16 and didn’t have the boldness to tell her how angry and hurt her reaction made me feel. I stopped going to church and knew that organized religion was not for me. Today, I don’t need a church to feel a connection to God.

Both the positives and negatives of the coming out experience shaped my formative teen years and influenced how I perceive, respond and adapt to challenging situations as an adult.

I see parallels between my own coming out with now coming out as a special needs parent.

T attending his first Pride at 1 year old, only a few weeks after he came into our lives.

In the early days, I worried a lot about how others would react.

Not because I felt ashamed, but because I did not want a four letter prognosis, FASD, to become a negative label or stigma for our T and to affect how others treat him.

But like my own coming out, it became easier with every step – and I quickly found support in family, friends, colleagues and professionals.

When I came out in my teens, the Internet was new. I am fortunate that today there are so many online resources and communities to help the hubby and I navigate this journey.

Perhaps the most important lesson that I learned from my own coming out was the importance of advocacy.

The hubby and I have embraced this ethos for T and are very grateful to have met so many allies through the school system and the medical and social services communities.

The irony, though, is that while many people know about T’s prognosis, he has yet to know about his condition.

Pride 2019, the last time we were able to celebrate in person with others.

I think a lot about how the hubby and I will have this conversation with him one day.

He is now 6 and we want to wait until he is a little older for two reasons: a) he is still young and b) he doesn’t have a diagnosis yet and is doing well so far with the supports we have in place.

I don’t quite know the words that I will use but I know that I will take a direct but compassionate approach.

I will make it clear that this was nothing that he did or was responsible for.

But the most important message that he needs to hear and to understand is that he is perfect the way he is.

There is nothing wrong with him, nothing to be ashamed of and whatever challenges he is facing because of his medical condition, we will continue to support and work together with him to face and to overcome them.

I can’t control how he will react. I sometimes worry about how this knowledge of his condition will shape his self concept.

But I do genuinely feel hopeful. Despite ongoing challenges and regular struggles, T continues to surprise us all with his awesomeness.

And like the rainbow that has been embraced as a symbol for LGBTQ2S+ inclusion, I feel hopeful there will always be something wonderful at the end of every stormy moment.

This feels like a lifetime ago but it was only last year when we drew a rainbow on our window to spread love and cheer during the pandemic.

Castles in the Sand

A day at the beach reminded me that childhood flies by like sand rushing through an hourglass.

A colleague once told me, when the hubby and I first adopted T, to enjoy T’s childhood because it will go by quickly.

I recently noticed that T has been staying in his bed throughout the night without coming to our room in the middle of the night.

Not only that, we can now simply tuck him in and kiss and hug him goodnight after reading books and then leave without a battle demanding that we lie down with him until he falls asleep.

I don’t know what to do with myself with that extra hour of freedom at night, but I’m looking forward to finding out!

I told the hubby it felt bittersweet, because it’s one of those subtle signposts that our T is inching away from childhood.

I will not miss him tossing and turning in bed next to me and keeping me up, but I will miss seeing the gentle light of sunrise on his peaceful quiet face, eyes closed, as he gently breathes.

As a child, time moved so slowly for me. A summer felt like an eternity of fun possibilities.

As an adult, you barely walk ten steps in flip flops and you’re ambushed with back-to-school or Christmas advertising.

As we step into summer, it feels like things are starting to go back to normal post-pandemic.

I pledged that we will especially soak up these precious no-school days of good weather, swims at the lake, and endless scoops of ice cream.

Because like a castle in the sand, childhood does not last forever.

Today, we spent a nice family beach day at nearby Darlington Provincial Park. Our only prior visit was in the winter and we knew then we wanted to come back to enjoy the beach.

It was busy but people were safely distanced. We learned our lesson from last weekend and bought a day permit in advance, a wonderful new service our province is piloting this summer.

We walked further down the beach where it was quiet and found a nice shaded spot under a large tree canopy.

The lake water was still cold but we walked in; T leading the way. After a few minutes of working up the nerve, I dunked my body in. The refreshing water woke me up better than my morning coffee.

T then wanted to make a sandcastle. We left him on his own while we hung out in the shade, enjoying the fresh air and calming sound of the water.

T and I then walked to the far end of the beach to explore, before he decided he was done and wanted to go home.

On our walk back, he said, “Poor daddy!” Because we had left the hubby on his own. When we got back to the canopy, he gave him a big hug.

We packed up our stuff and enjoyed a “late lunch” of ice cream. Gotta fill our empty tummies with something!

Here’s to a long fun summer for everyone!

“Yes, I Can…”

Monkey bars provided a magical moment when T’s “I can’t” became “I can.”

We see for ourselves that while T has a challenging prognosis of at risk FASD, he has so many great qualities. Among them, he is kind, caring, funny, bright and persevering.

But we also see, and notice more, things like anxiety, self consciousness and hesitation.

As an adult, I see and understand now how confidence often plays an important role in allowing others to excel and propel forward.

The hubby and I are mindful with helping T build an inner confidence – as well as perseverance and a willingness to take risks – that can help him navigate challenging moments.

I always think about and wish for T to develop a positive inner voice at an early age, because I am mindful that as he gets older, he will encounter those who’ll chip away at that inner voice. It’s a given; I’m not a pessimist, I’m just a realist.

I will say that some of the challenges related to his prognosis that manifest themselves through his behaviour can often make it difficult to champion this positive message.

Some days it is hard to push the message of you can do it, when I’m clearly impatient or irritated, because he’s driving me crazy.

But thankfully, for our family, the good days far outweigh the challenging ones – and I will never take that for granted.

So back to the monkey bars…

I still remember the first time T showed interest in monkey bars was around age 3.

He’d just hang on a single bar and then drop himself to the ground. Or he would ask the hubby or I to hold him as he grabbed each bar and let us carry him from one end to the other.

Last summer, he decided he would scale across and he did it in one go. Just like that. I was so impressed.

But then he never did it again – and approached them with hesitation. I’d ask him, “Why don’t you try again? You were able to do it before.”

His answer would be, “I can’t! I want you to carry me!”

With warmer days, we’ve been spending more time at the park, because evening walks are always a highlight of our day.

Hello, monkey bars, our old friend.

I tried to break it down into bite size steps.

So a few days ago, I asked, “Why don’t we try just going from one bar to another bar?”

He looked at me with apprehension. But did it.

Big celebratory cheer from me.

“Now try another.”

“I can’t!” He whined.

“You just did it now, try. You can do it.”

He reached for the next bar. A big smile beamed across his face. Then he dropped to the ground.

I didn’t push him this time.

Last night, we were out again and T was playing with his new 6-year-old friend while I chatted with the grandma.

The friend and T went near the monkey bar. The friend tried first and dropped to the ground after a few bars.

T decided he was going to give it a try – without any nudging from me.

He grabbed the first part and I cheered him on.

Then the second. The grandma and I cheered.

Then the third. He had an excited smile now.

Then the fourth. He was halfway done now. The grandma got up from the bench she was sitting on and cheered him on loudly now.

Then the fifth. Sixth.

His arms were trembling and his cheeks red.

One more to go. And it was angled higher than the other bars. Was he going to make it?

“Come on, you can do it!”

T grabbed the last bar and then quickly dropped to the ground. He was sweating, cheeks blushing.

We all cheered him on and he came up towards me and we gave each other a high five.

“You did it! See, you can do it!” I told him later that night, after I retold them story to the hubby.

“Yes, I can,” T said.

I know these are just monkey bars but I see this moment as a metaphor for life itself. And I hope these words from T continue to become a regular part of his inner voice.

Beach Day at Home

The best laid plans did not go as planned – and it ended up just fine.

Our City got a scorching weekend, our first real taste of summer, with two sunny days in the 30s.

I had planned for the family to go to the Bluffs, one of our favourite parts of the City, with a nice trail and vast beach.

The hubby and T, as always, took their time and we left three hours later than I had intended. As expected, the beach was at capacity and police blocked the street into the area.

I was so grumpy on the drive home, because this was not the first time – nor will it be the last! – that we could’ve prevented this if we had left early.

When we got home, the hubby turned on the sprinkler in the backyard and picked T up and ran through it.

Seeing T laugh and run back and forth repeatedly was all it took for me to lose my grumpiness.

The hubby then picked me up without warning and ran through the sprinkler with me. So I was now soaked too.

I went in and opened a container of guacamole and poured myself a glass of cold mango juice and enjoyed both with a scary movie in the air conditioner while the two of them stayed outside.

The weekend may not have included the beach I planned for but it ended up being a good one.

We also included learning activities. This was the best writing practice we’ve seen from T yet!

Oh, and I took Ma to get her second dose. She is fully vaccinated now. What a relief!

In the meantime, we will have many more beach days to look forward to yet, cuz summer is just getting started!

Teaching Kids About Money and Valuing Things

When T indirectly broke my tablet’s power adapter, he said non-chalantly, “Just get a new one.”

“And where do you think the money is going to come from?” I asked him.

Without flinching, he said, “I’ll open the pig’s bum,” referring to his piggy bank.

Yes, a power adapter wasn’t super expensive. But it did highlight T’s lack of awareness about the value of things.

In fairness, he’s 6 and he has the rest of his life to figure out money, work, and all that.

But it’s important to me that T learns at an early age to value things, to know that things are earned, and to not be wasteful.

At an early age, my parents told me to finish every grain of rice on my plate, because farmers work hard to harvest a single grain of rice. They cautioned that every grain not eaten meant one pimple on our future spouse’s face.

For individuals with FASD, the concept of money is a difficult one to learn, even at adulthood.

When T received his prognosis of at-risk FASD, I read up everything I could about it.

I focused – and yes, in some cases, obsessed – on things I knew were possibilities down the road, like behaviour, speech, reading, etc.

Understanding and working with money was also something I always knew we’d want to work with T on at different points in his life.

At a young age, it’s just letting them be aware that things have monetary cost and value. That’s why it’s important to take care of what we have.

In the last three weeks, his senior kindergarten class have been learning about money.

They are simple lessons focusing on Canadian coins: the twoonie ($2), loonie ($1), quarter, dime (10 cents) and nickel (5 cents).

I created this little simple learning tool for him and we’ve been practicing with it from time to time, including on weekends.

As with every other thing, the best way T learns is a hands on way and when he has fun.

Two weekends ago, I created a little grocery game to play and learn together with T.

I found 5 items I knew he enjoyed and made them grocery items he had to buy with coins I gave him, including his Pediasure for $2, Oreo cookies for 25 cents and a Starburst candy for 5 cents.

And yes, I know what you’re thinking, whatever money he spends, he’ll get back from the tooth fairy with all that sugar!

Since he is inseparable from his stuffed toys these days, Moo Moo got to play the grocery store cashier.

First, we did a review of the coins using the tool I made as well as a school worksheet (below).

I asked T to pick one item at a time to bring to the cashier. Then I asked him which coin he had to spend to pay for the item.

The twoonie and loonies were easy. He found the small coins harder to distinguish.

With that said, never underestimate T. I was puzzled as to why he didn’t give me the quarter for the 25 cent purchase when it was the last item and last coin standing.

Then he showed it to me. “It’s not the same!”

Turns out, he had an American quarter and not the Canadian quarter.

So technically he was correct. At the currency exchange, he could’ve gotten two more Oreos!

It was a fun exercise to do. I think some of the concepts stuck with him and we will just keep practicing this over time. He’s still young.

If all he got out of this exercise was that things cost money and are not free, it’s a win!

Massive Meltdown at the Park

An explosive moment in public provided a hard reminder about kindness and letting go.

I’ve written on numerous occasions about raising our six-year-old son who has great potential and a challenging prognosis of at-risk FASD.

These challenges include explosive outbursts, impulsivity and emotional regulation.

Managing these moments feel especially difficult during these hard days of virtual schooling.

Thankfully, about two weeks ago, he made a new friend, a six-year-old from outside of the City who is staying with his Grandma during the week, who is helping him with virtual schooling.

The two of them have been playing very well. Now that the days are getting longer, it’s been nice to take T outside to play. Let him run ragged, so he can go to bed faster is how I look at it.

The nuclear meltdown happened last Thursday.

As with these unexpected moments, it came out of nowhere.

T wanted to be pushed on the swing. As he often does, he asked in a loud demanding way.

I told him to ask nicely or I was not going to push him.

Out came the grumpy T. “Shut up,” he said.

I reminded him to use nice words.

“Do you want me to slap you?” He said.

Planned ignoring from me.

So he upped the ante. “Do you want me to punch you?”

I gave him one last warning to talk nicely or we were going to go home.

So he got off the swing and shoved the swing towards me.

I said softly to the Grandma of T’s new friend. “I’m sorry, but we’re going home now.”

The thing with managing T’s behaviour is that you have to follow through with your warnings.

So T erupted like a volcano.

Loud screaming, crying, fell to the floor. If you only heard what was going on without any visual cues, you’d think a child was being murdered.

I picked him up, this kid that was now half my height, and carried him kicking and protesting out of the park – defeaning screams and all.

It was the longest three minute walk home.

I felt the heavy gaze of every parent and child in the park. I felt like eyes were looking out the windows of homes on the street.

When I got home, I dropped T to the ground. I was trembling and my voice was shaking.

I told him how embarrassing his behaviour was – and I told the hubby to take over, because I was done with him for the day.

As a special needs parent, you learn to live through these moments. But they are nonetheless draining.

It ruined my long weekend; I had taken Friday off work as a mental health day and to take T out for a hike after school.

I spent the day in my room with myself. I did the bare minimum with T that day, because I was so upset.

But beyond the anger and embarrassment, what I really felt and was having a hard time processing was the sadness.

It was a sobering reminder that despite the many positive and amazing gains T had made, there is always this specter of his prognosis.

Specifically, it reminded me of the lifelong struggles he will likely have.

One of my big emotional triggers is around the worry of how T’s behavioral challenges will impact his social life as he progresses through childhood, adolescence and adulthood.

He is a very bright, funny, caring and sweet boy. This is the majority of our experience. But all it takes is a moment like this to tarnish his impression on others.

I find this the hardest part to cope with.

To put it frankly, this was an incredibly deflating experience.

We always try to teach T that if you fall down, get up and try again.

That really is what special needs parenting is all about – whether we like it or not!

And that’s what the hubby and I did – after about three days of my pure grumpiness.

I told the hubby I don’t think I could face the Grandma. She probably wouldn’t want her grandchild to play with T again.

But we had to try. Because we can’t live our lives in constant fear of judgment or looking like we’re screwing up in public.

Yesterday night, we took T out. We had a very good day in school and were optimistic we were not going to have a repeat episode.

T and the boy played so well together and even included another girl in their game.

The Grandma asked if he’s feeling better. I told her about T’s prognosis and background.

Being a retired high school teacher, she knew about FASD. She then disclosed one of her other grandchildren has autism and she shared her experience with supporting him.

Then she added that she thought the hubby and I were doing a great job.

I know she was trying to be kind, as she’s only just met us, but it was nonetheless such a reassuring thing to hear.

We walked home together afterwards with T running far ahead of us.

She asked me if he was going to be ok.

I joked that if someone abducted T from the streets, they’d be paying me to take him back.

This evening was a wonderful reminder that there are no coincidences in life and that we were meant to have the moments that we have – even these explosive embarrassing moments – and you meet the people you’re supposed to meet, like this Grandma and her grandson.

It was also a good reminder to always exercise kindness with yourself.

As T got out of his bath that evening, I wrapped his towel around him and I gave him a big long tight hug.

And I finally let go and felt the heaviness of the past few days fall off my shoulders.

Resting Like Royalty

As Canada celebrates Victoria Day long weekend, the two queens in T’s life are focused on recharging.

The hubby worked on the garden today. I didn’t even pretend to help. I love gardens, especially ones I don’t have to tend to!

Instead, T and I went for a nice long hike at Rouge Park, an urban oasis a short drive from home that has been a refuge during the pandemic.

It was sunny, cool and breezy – the perfect weather for a nature walk.

I’m always thankful for what a trooper T is. No hill is too long or steep for him to walk and no woods too dark. He’s in his element in nature.

We ended our visit by the creek. Other kids were dipping their feet in and I wished I had packed his water shoes. The cold water looked so inviting. Next time!

We ended the day with baked lobster tail for dinner. They were on sale in the frozen aisles for half off. So I decided to treat ourselves.

The last few weeks have been very tiring and hard. I can’t explain how exhausted I am without sounding like I’m whining.

With at least five more marathon weeks to go, we’re happy to get an extra day to recharge.

Wishing everyone a nice restful weekend!

The World Is Larger When You’re A Kid

Never lose your inner child, I thought, as I took T 30 years down memory lane.

Last Saturday morning, I took T on a nostalgia visit to my elementary school playground.

I was a bit over a year older than T is now when I last played there 31 years ago. It was the first school I attended in Canada after immigrating from the Philippines.

Two years ago, the hubby, T and I moved a short way down the street from this school.

This seemed so much bigger when I was 8!

Life truly is a circle.

And things seem so much bigger as a kid!

Some of the old playground is still there while newer components – and an entire extension to the school – have been added.

I remember as a Grade 2 student having to run laps around the paved perimeter around the school field. It felt massive.

As an adult, it almost feels minuscule.

It was a fun morning in the sun.

During these lockdown days, the thing that eats at me most is how little interaction T gets with kids.

So it was nice for him to be around other kids, even if they mostly played on their own.

Tonight, after the end of a long work and virtual schooling week, the hubby, T and I went for a family walk around the block.

I remarked to the hubby how little of these moments we get to enjoy together on a weekday, considering that we are together 24/7, because of how stretched our lives are right now.

So it was calming to spend the time outside together, to watch the hubby and T play, and to watch T stomp and run across the field overgrown with dandelions as the day turned into night.

I’m happy for the long weekend and happier for these longer days.

Visiting My Kindergartener’s Class

It’s the horror every child dreads: when the parent visits their class.

It began when T’s class, still virtual, was doing a week-long lesson about rainforests.

Unbeknownst to me, the hubby reached out to T’s teacher to share a read-aloud video that I had done a few years ago.

It was part of a fun project my colleagues led and I filmed one of the videos, reading a kids book about a tiger in a rainforest.

The hubby saw a thematic fit and before I knew it, I was invited to share the video with T’s class.

I was ready to murder the hubby when he told me and I joked with T’s Child and Youth Worker that I was soon to be a single parent.

On the day of the visit, I was quite nervous.

I do presentations and chair meetings all the time for work and am very comfortable doing so. But presenting in front of a class of kindergarten kids – and T’s peers – was terrifying.

I talked faster than normal. But I got through it.

Then the teacher played the video for the class. I nervously watched the children’s faces. Afterwards, T’s teacher asked how the kids enjoyed it.

I held my breath but sighed when I saw kids putting their thumbs up. One kid shouted, “Double thumbs up!”

I looked at T, who seemed a mix of amusement and indifference.

I thought it was over then T’s teacher asked if I could do the tiger roar as I had done in the video.

I giggled nervously. The hubby, who was standing off to the side, broke into a giggle fit.

I debated about stabbing him right then and there but there would’ve been too many witnesses.

So I did the big tiger roar.

I started laughing at myself afterwards. Then T got irritated – cuz he thought I was laughing at him – and kept turning off the mic and video when I tried to say thanks to his teacher.

All kidding aside, I really enjoyed the experience.

And you know what, I did feel proud getting to share such a fun video and great story on behalf of T to his peers. Hopefully I made him proud!

He’s still at this adorable age where his parents are fun and he wants to play and hang out with them. So this experience visiting his class was just an extension of that bond.

I am always so touched when the teacher tries to involve T in the lesson. I know her intentions in having me speak to the class were good.

And hey, might as well do it now while T is young and not too cool yet for his embarrassing parents!

The Odd Duck

You often need to look no further than to nature for a little perspective.

T and I went for a late morning walk to enjoy the sun, fresh air, and to get out of the house.

Outdoor spaces have been a lifesaver during this pandemic. On some days, the thought of outdoor time is what keeps me hanging on.

This past week was hard. The combination of virtual schooling hell, general tiredness, and a feeling of languishing felt stressful.

I had a meltdown mid week. I was trying to get T to write out sentences. Nothing hard but he was being so difficult and I lost my temper.

It was not one of my better moments, but it’s behind us and I’ll do better next time!

My goal for this weekend was to recharge and reset. Nature always helps with both.

T and I explored a new trail along the Electric Corridor near our home.

A field draped in yellow dandelions during mid Spring always feels calming.

The trail led us to a pond, where we stumbled upon a family of geese and goslings.

Beyond adorable, T was immediately enamoured.

“Can I pet them?” He asked and I reminded him to leave wild animals alone.

We enjoyed watching them from a close distance, with T keeping a close eye on one of the pacing geese, convinced it was going to peck him.

There was a set of goslings sitting in a shady part at the edge of the pond, with one of the parents hovering protectively nearby.

I thought to myself how wonderful it was to be reminded that families come in all forms and this family was making due on their little pocket of this planet that has been taken over by humans.

Then I noticed a gosling off on the side, not sitting still like the others. Wandering and pacing about, while being followed by an elder goose.

That was a kindred spirit for our T, I thought.

“Odd ducks” in nature don’t have access to therapy services, school supports, toys like a Switch to motivate them – but somehow they get by under the watchful care of their parent.

Yes, I am over simplifying and romanticizing a brief encounter with a gosling and its parent.

But it was a gentle reminder to take a deep breath and if nothing else, take a moment outside of my little life and enjoy the larger world around me.

Moo Moo and Crab

Say hello to our T’s adopted children.

T has never played much with stuffed animals when he was younger. But at age 6, they join him everywhere.

He started taking his kids to the car to sit with him for the drive to and from school (when they were open!), to sleep with him, and to join him when he’s brushing his teeth.

During virtual schooling, we have an army of stuffies sitting around the tablet and he’d often bring some of them right up to the camera.

I now have to floss Moo Moo and Crab (it’s really a lobster) before I can floss T in the mornings. As I brush Moo Moo’s teeth on some mornings, I think to myself this is what my life has come to. 😂

All jokes aside, it is quite a cute phase to experience as I know I will miss this when T is older. And I quite enjoy being their Grandad!

Every night before bedtime, T needs to have all of his stuffies with him in bed and the hubby and I have to hug and kiss each one of them as part of bedtime routine.

You may also have seen our recent puppet show productions! Below is a never before seen clip we did for Easter a few weeks ago!

A few weeks ago, as I laid next to T before bedtime, I overheard Moo Moo and one of his other stuffies, Patchy Patch, have an argument.

It turns out Moo Moo was angry at him. But they were talking it out and resolving the conflict with T’s help.

I shared this with T’s behaviour therapist and she said these toys could be a great outlet to help T process and learn about relationships.

I will say that it does make me sad – and pause to take deep breaths sometimes – when I’m having a busy day at work and I see T playing by himself with his stuffies.

I know it’s healthy play but it makes me sad and mad that schools are closed and T is missing valuable interactions with other children at such a critical point in his development.

But I know this is not final and it will pass.

So in the meantime, Moo Moo, Crab and friends will provide wonderful companionship and even some life lessons for our endlessly restless and lovable little pest.

The Power of Having Someone Believe in You

An understanding, accommodating and compassionate teacher is a true blessing.

We have been so lucky that T has had amazing supports in his junior and now senior kindergarten years.

There are ongoing struggles, especially in the daily hell of virtual learning. But we are taking it a day at a time.

Gym class has always been a challenge. Even during in person schooling, T rarely participates. In the early days of virtual learning, he refused to even sit down for the session.

We think it’s related to confidence and not wanting to look stupid in front of his peers.

So we skipped gym class and did one-on-one sessions with his Child and Youth Worker instead – which worked well. They did activities such as scavenger hunts and T came out of his shell.

He recently had a new gym teacher and according to his CYW, the teacher has a real soft spot for T and really wants to find a way to include him in class.

So when we went back to virtual schooling five weeks ago, we tried a different approach.

Mondays, Wednesdays and Fridays, T sits in on gym class. There is no pressure to participate but he needs to sit, watch and listen.

Tuesdays, Thursdays, we continue to meet one-on-one with his CYW to maintain familiarity in his routine.

His gym teacher and CYW have been amazing in collaborating. The CYW shares things T enjoys, like scavenger hunts and Mario Bros., and the teacher incorporates them into gym class.

During this Monday’s gym class, the teacher structured it as a math movement class – see above. Kids were given multiple choice questions; a movement action is associated with each multiple choice answer – like jumping jacks, jogging on the spot or push ups.

As expected, T just sat and listened but I pushed him to answer the questions to me even if he didn’t want to do the related movements.

Then out of nowhere, T’s teacher called on him. “T, what’s the answer?”

T, with his camera off, looked apprehensive, but I reminded him that he knew the answer and so I unmuted the mic and he answered.

The teacher praised him in front of the class and I gave him a big smile and high five.

I thought that was the end of that, but every question, she kept calling on him.

With each passing time, T’s hesitation lessened and I could see how happy he was to answer correctly in front of his peers.

By the end of the class, the teacher called on other students as well – which was good, because I didn’t want other parents to feel like she was playing favourites.

Then T turned to me and asked, while the mic was muted, “Can I answer the question?”

I was floored. He had never ever wanted to volunteer an answer before.

It goes to show what a difference it makes to have someone believe in you and to champion for you – to help build your confidence and self esteem.

I know it is not always going to be like this on this academic and life journey with T.

The hubby and I made sure to share our deep and sincere thanks with the teacher through T’s CYW. We thanked them both for always trying new things to include and bring T out of his shell.

I always pray and wish for T to be surrounded in his life, outside of his home, with people who believe, champion and support him.

The power of belief, and knowing that others believe in you, make such a positive difference.

5 Years

Cherry blossoms are a beautiful reminder to live in the present.

The cherry tree in our yard is in bloom and we’re gonna enjoy their beauty for the week or so that we have them this and every Spring.

They remind me that lovely moments in life are often fleeting and so we should enjoy them while they are here.

But the good news is they will return again and again.

That’s probably one of the most important lessons I’ve learned as T’s parent.

This weekend, on May 2 specifically, marks the 5 year anniversary of when the hubby and I met our beautiful little boy for the first time.

May 2 was a Monday in 2016. We had found out unexpectedly just four days prior that we were matched with not one, but two children. We ultimately decided to pursue adoption of T.

I left work halfway through the day and went on a one-hour transit ride through the subway and bus to a home in the West end of our City.

The hubby drove from his work and met me there. We arrived a few minutes before our appointment.

We rang the doorbell. T’s foster mother, whom we met a few days prior, opened the door. In her hands was our tiny little T, wearing a very sharp looking Hudson Bay hoodie.

The very first time I held T in my arms and the very first photo we took together. Time flies.

We spent the afternoon playing with him and his foster brothers.

Over the course of the week, we made daily visits – sometimes during the morning, sometimes the evening – with each visit becoming longer.

Then he stayed over our home for the first time in the weekend then 12 days after our first visit, he moved in with us.

As starry-eyed first-time parents who had waited over seven years to be matched with a child, little did we know the adventure that we were going to embark on.

I’ve written a lot on this blog about the ups and downs of raising a child with great potential and a challenging prognosis of at-risk FASD.

But the message I always return to is that while there are so many hard moments, often on a daily basis, there are many beautiful moments that bloom throughout each day.

The first steps, the first words, the first “I love you,” the first hug, the first family roadtrips and adventures, the first day of school.

And like the blossoms of a cherry tree, I sometimes forget to take the time to enjoy them. They often feel fleeting in the daily chaos and they are blink and gone before you know it moments.

But thankfully, life is often filled with grace – and these moments will come into beautiful bloom again and again.

Teaching Kids To Not Fear Failure

Failing can be a good thing.

I recently had a coaching conversation with a colleague. The night before, they had delivered a presentation that did not go as rehearsed.

They were mortified. But I was impressed with how they owned their “failure” and identified how they would’ve done it differently.

Fear of failure is natural. It’s certainly embedded in us as children and in today’s perfection obsessed world.

I grew up in a culture where failing is frowned upon. If I brought home a test score of 90%, I’d be asked where the other 10% was.

One of the best lessons I learned in adulthood is that failing can be a good thing and be one of life’s best teachers.

It is these moments that allow us the biggest growth and maturity.

Well, the good news for parents of special needs kids is that you will get plenty of opportunities to fail, almost on a daily basis.

We enjoyed a walk this weekend by the water.

Potty training that takes years. Super prepared plans for virtual schooling that go out the window. Outbursts in public that make you feel so judged by others.

But it is through these moments that I gain perspective, gratitude, resilience and even a sense of humour – sometimes at the expense of my ego and sanity.

Children with T’s prognosis – at-risk fetal alcohol syndrome – are often described as anxious.

We can see some of this anxiousness in T, including when it comes to schooling.

His Child and Youth Worker commented that he is often reluctant to participate during group activities, like circle time.

I see this very clearly during virtual learning, when I encourage him to put his hand up to share an answer he clearly knows, but he refuses.

We also see this when it comes to learning to read. When we try to practice his sight words or reading simple level books, he is very reluctant to sound out a word.

When I ask him to guess, he gets upset and frustrated and asks me just to say the word for him.

His CYW theorizes it has to do with his confidence and I tend to agree. I think he’s afraid of getting something wrong in front of others.

When he’s playing one of his online games, he gets very upset when he loses.

It’s almost hilarious how upset he gets to the point of calling the game all kind of names and vowing never to play it again.

Video games actually provide a wonderful metaphor about how failure is not final. You get to try again and through failing, you learn what not to do next time.

Just like we’re working on helping T process his emotions, we’re trying to teach him it’s ok when things don’t go as planned.

Water and playing in sand, two things that T enjoys and that bring him great calm.

The hubby and I try to remind T it is important to try – and if he doesn’t get it right or win, it is no big deal. Just try again. But not trying is not an option in our family and in life.

T’s CYW is also trying to teach T about perseverance.

This week, they watched an online read aloud story together called Jabari Jumps, which tells the story of a boy who overcame his fear of heights to jump off a diving board.

Overcoming the fear of failing is a skill that takes a significant amount of time to learn. I’m 40 and still struggle with this on some days.

T is not often lacking in confidence but he does get anxious about trying something if he thinks he might not do well in it, especially if it’s in front of others.

And so, it’s something we’re gonna go work on together with him – to reinforce and to remind him that failing is not fatal. You can recover and will bounce back from most failures.

A Bouquet of Dandelions

The beauty of one’s actions lies in their intentions.

One often views dandelions as pesky weeds. The hubby spends at least one weekend each Spring digging them up from our yard.

But viewed through the eyes of a curious six year old, they offer an often overlooked beauty.

Our world has contracted once again thanks to a return of stay-at-home orders. T is back to virtual learning and day camps are closed.

I’m too tired to complain and we’re focusing what’s left of our energy on keeping T calm, happy, and up-to-date with his school work.

The past week was supposed to be Spring break and T would’ve been in camp with his friends.

Instead, we camped at home. As the hubby and I had work, we kept learning stuff to a minimum.

Each day, we did 30 minutes of reading practice, took him for long walks and did one activity, like baking and kitchen science. The rest of the day, he fended for himself.

Baking project this week: No bake keylime pie.

I reminded myself about this post I wrote last year about teaching and letting kids to be bored.

T did great. Yes, there was lots of screen time. But there were also hours lost of him just playing with his toys and talking to himself. Meltdowns were a minimum.

I enjoyed when our guest room door would open while I was on a work call and he’d poke his head in and I’d ask him if he’d like to say hello to my colleagues and he’d scream loudly, “No!”

After work on Wednesday, T and I went for a long walk.

He noticed the dandelions. He stopped every few steps to pluck one from the ground.

I noticed after a while that he had bunched them into a bouquet in his hands.

“What are you doing?” I asked him.

“I’m making a gift for you and daddy,” he said.

He held them on our walk back. When we opened the front door, he held the bouquet behind his hands and told the hubby he had a surprise.

The hubby put T’s bouquet into a glass of water.

In these pandemic days, these small gestures of genuine childlike kindness make our days.

Very soon, the school field behind our home will be covered in a yellow carpet of dandelions. We’ll be sure to take out a larger basket for T on our walks at that time.

During bedtime, I told T how proud and thankful I was that he was doing a great job keeping himself busy. He wrapped his arms around my left arm and snuggled for a few minutes.

Shortly after, he was out for the day.

“Alexa, Pull My Finger!”

Our boy has reached the developmental stage where farts and poop are the best thing ever.

As a parent, you always worry about whether your little one is hitting milestones.

Well, let me tell you, our T is exceeding expectations with the farts and poop phase, even using technology in innovative ways.

Of the millions of dollars spent in research and development of smart devices, I bet the inventors never imagined the sheer joy their creations would bring to kids at bedtime.

On a recent evening, I spent 20 minutes trying to stop T from repeatedly asking the Alexa next to our bed to “pull his finger.”

I never imagined that Alexa even responded to that. But sure enough, the usually classy elderly British lady would just let it rip.

Then she asked, “Would you like me to do that again?”

I screamed, “No, Alexa stop!”

But T’s giddy, loud laughter and screams of, “Yes!” consistently overpowered mine.

And I secretly loved every minute of his laughter and enjoyment.

A few days later, last Friday, on the last day of virtual school before the current Spring break, T’s class was doing a group language activity.

The teacher worked with the class to create a postcard message together, imagining that they were astronaut Chris Hadfield sending a message to his family down on Earth.

“What else can we add to the message?” the teacher asked the class.

I always encourage T to participate more in class, because I know he has something interesting to say when it’s just to the hubby and/or I.

“T, can you put your hand up?” I asked. “What is the astronaut doing in outer space?”

T said to me, “He’s pooping in his pants.”

To which I quickly replied, “Put your hand back down please.”

Magical Stop Motion Animation

On this rainy Sunday, T and I played around with creating stop motion animation.

It was two Sundays ago that we experimented with creating puppet show videos.

I like doing activities that encourage T to build his creativity and digital skills.

With April Break camp cancelled this week because of stay at home orders, I’m planning activities to keep him busy as I still have work.

Stop motion animation is something I’ve always wanted to try. I found this video explainer helpful.

I have a phone camera and tripod. I downloaded the Stop Motion app from the Apple App Store.

As soon as I showed T the sample stop motion animation above, he got off his tablet and asked to help out.

I told him to pick any toys he wanted to use in his video and he came back with his giant stuffed animals. And here’s T’s very first animation.

I don’t think he got the concept at first. But it was all about having fun and experimenting.

Then T, who has the attention span of a gnat, got bored and went to build a robot with his blocks.

So I suggested we create an animation of his blocks coming to life as a robot.

It took convincing, but he bought into the idea. He didn’t want to place and move the blocks, as he found it tiring (oh, the child abuse!), so I asked him to be the camera man.

I moved the blocks around and T snapped the photos and the app brought it to life.

As soon as T watched our work, his smile was all I needed to know he was pleased with it.

Then T wanted to do an animation with his wooden train set. He was already quite restless by this point, so we kept it short and sweet.

This was probably my favourite one that we did and I have ideas of how to make a more elaborate animation with the train set.

But I want to do it with T and will wait when he can focus. The whole point is to have fun together and I want the final output to be a reflection of our time together.

The imagination of a young child is so pure, innocent and limitless – and I can see that T has a wonderful imagination.

As tiring as it can feel at times to help channel his energy and creativity sometimes, the end result is always fun and worth it!

Oh, and here’s another one done later in the afternoon in T’s room!

“When I Feel Angry”

Team T have been trying different strategies to help our sweet boy process his emotions.

Emotional regulation is often a challenge for children with T’s prognosis – at-risk FASD.

We experience a full spectrum of emotions, from happy, sweet, caring to explosive moments.

The hardest moments are those when he is set off in the blink of an eye – over seemingly small things, like asking him to brush his teeth, go to bed, or focus on virtual learning.

Thankfully, the majority of our time with T are positive. But it’s important to intervene while he is young, so we can set a foundation for later life.

The hubby and I have read on private groups about kids with FASD who have explosive moments, damaging things at home or physically turning a classroom upside down. Kids with FASD may be at risk of issues with the law in adolescence.

I don’t think – and hope – we’re on that path but we’ve seen things at home that have given us pause and at school and daycare, there have been a few moments related to disregulation.

Most recently at daycare, staff reported that a colleague was bothering T. He got frustrated and threw a wooden block at this peer, causing a bump on their forehead.

Granted, it’s not all T’s fault, but the mother was not happy and asked for T and the friend – who love to play together – to be separated.

That was hard to take in as a parent and it was hard for T to understand the consequences of his – and the peer’s – actions.

Life is a work in progress and here are a few strategies Team T is currently using to help him work on his emotions.

Books are a great tool to share lessons with T in a non-lecturing way. Visuals are so helpful too.

His behaviour therapist recently recommended a list of great books and we found some of them as read aloud videos on YouTube.

Two books – “When I Feel Angry” and “When Sophie Gets Angry – Really Really Angry” – provide relatable characters and teachable moments that feel relevant to T.

What I like about these stories is they don’t shame kids for feeling angry and at the same time, teach them a more productive way to process and express those emotions.

We are so blessed to have really understanding and supportive daycare staff. They may not entirely get T’s prognosis but they have been so genuine and open to learning and trying things.

I often chat with the staff during pickup and she runs ideas and questions by me.

We’ve connected daycare staff with the Special Needs Resource Consultant from Community Living Toronto that supports T at daycare.

The consultant recently provided a role play Conflict Card Game to daycare staff to try out.

The game presents a series of scenarios – sample above – and it provides the staff and T with a play-based way to talk about how to emotionally respond to common scenarios.

We are also incredibly blessed and grateful to have the dedicated one-on-one support of his Child and Youth Worker at school this year.

She has been such a godsend and allocates time each day at school to work with him on soft skills.

What we appreciate so much about her is her willingness to learn and apply things that we and the daycare staff are using, so there is consistency at all touch points of T’s life.

At home, we try our best to role model the expected behaviour, because kids learn best from observing their parents.

The hardest thing about parenting a child like T is the difficult behaviour and I confess to not always being the most graceful in my responses to his actions.

Such as when we found out with very little notice this Tuesday that we were returning to virtual schooling the next day and that day camps next week were cancelled due to a return to shutdown.

My anxiety level shot up and I was not very calm in responding to T’s tantrum during bedtime.

But thankfully, every day with T is a new start and you just have to let the previous day go.

This morning, T’s class did a virtual art lesson – which we’ve done and loved in the past. They drew a sunflower – the symbol of good cheer.

After T outlined his sunflower, he said he was done and got up to play with his toys. I told him he needed to finish his work and to colour the sunflower in.

And just like that, he blew a big fit. He threw his artwork to the ground and stomped off. Started telling me to shut up and saying that he was tired and his arm was going to fall off from all that hard work of coloring.

I had to restrain myself from laughing or losing my shit – because it was both hilarious and incredibly frustrating.

But I kept my cool and calmly reminded him that he would not earn tablet time if he did not finish his work.

After a two-minute tantrum, he came back to the table, started chuckling again and proceeded to finish his work.

For about two minutes, the two of us quietly completed our sunflower. Afterwards, I asked T to share his work with the class.

His teacher praised him for a job well done and after we went back on mute and turned off the camera, I told T how happy I was that he was able to control his emotions and finish his work.

It was truly a sunflower cheerful way to end our morning.

The Renewal of Spring

An Easter egg hunt, yard work and COVID vaccine made for a rejuvenating family long weekend.

It was a Good Friday after I took Ma for her first vaccine. I felt thankful for how organized the site was; we were in and out in 30 minutes.

Our province is facing an intense third wave, so knowing Ma and many others are vaccinated makes me feel more hopeful.

On Sunday, T woke up early knowing the Easter Bunny had visited. He wasted no time finding the eggs and the basket of goodies left for him.

He then made me hide the eggs again – and in their original hiding spots, he insisted – so he could find them again.

Easter is a symbol for resurrection – and Spring is a season when the decay of autumn and the death of winter give way for renewal.

Spring was very evident as our family spent a satisfying Sunday afternoon doing yard work.

While the hubby took T to the playground, I raked up the dried leaves that coated the perimeter of our backyard.

I made three huge piles, which T took no time to jump into after they came back from the park.

The magical glow of the late afternoon sun bathed our backyard as the hubby, T and I worked together to bag away the leaves.

T alternated between playing in the pile of leaves and helping the hubby and I.

I watched with amusement and pride as he raked up the piles of leaves and gathered giant piles of leaves and dropped them into the bag.

It is my hope T develops a strong work ethic as he gets older and we try to encourage him to do chores around the house.

But we also don’t want him to grow up too fast. And it’s ok if he just wants to goof off.

It was a t-shirt kind of day and there was a warm gentle breeze. The signs of new life and rebirth were everywhere and it felt reinvigorating.