Ignite the Night and Let It Shine

We started T’s summer with fireworks.

On Canada Day last Friday – T’s first day of summer break – we headed off early morning to Tobermory for our first camping trip since 2018.

Once we got past city traffic and into the country, the scenery was beautiful, including plentiful fields of golden yellow canola.

I love that T can now spend long drives looking out the window and enjoying the scenery.

We really lucked out with weather. Our drives there and back were rainy but our three days in Tobermory were sunny, warm and breezy.

This was our home for three nights.

T’s feet used to dangle in the air when he sat on the green chair gifted by a friend.

Our meals were simple and delicious. A fire roasted hotdog tastes so good.

T roasted marshmallows, while we kept a close eye on him. His impulsivity and hyperactivity make me nervous when he’s near an open fire.

T mostly sat well, although there were a few tantrums when we reminded him to stop poking a stick in a fire and light up things outside the pit.

Bathing in nature’s green was healing.

Tobermory had been on my wishlist for years and I am thankful we made it out. Our good friend, T’s “Auntie E” helped organize and joined us.

The scenery and the nearby national parks were breathtaking – more of them in future posts.

On our first night, we drove to nearby downtown Tobermory – alive with summer tourism.

We hung out at the marina and had Mexican for dinner. We were really roughing it!

We experienced a first: T ate an entire hamburger! We could not believe it!

We made more beef burgers for him that weekend at the campsite and it was not a fluke! A big win!

After dinner, we claimed a bench by the water and waited two hours for Canada Day fireworks.

It was very chilly and some whining here and there from T, but we made it.

There was still daylight – golden orange – at 10 pm.

At that moment, I longed for these long summer days to last forever.

The fireworks started shortly after 10.

I had worried the loud noises would bother or disregulate T but he got lost in excitement.

He paced and bounced about excitedly. He looked up at the exploding colours in the sky and rolled his hands in the air – most likely a stim.

The show was done in a few minutes. T shouted excitedly that the fireworks were so awesome.

We got back to our campsite and rolled into bed close to midnight.

It was pitch black and the sound of the leafy branches rustling in the moderate breeze quickly lulled us to sleep.

His First A!

As flowers bloom in our garden, T reaped a sweet harvest this week.

Report cards were sent home during this last week of school.

The hubby and I spotted T’s very first A right away – given for reading!

We were so thrilled, because of how hard T – and all of us at school and home – worked on his reading.

As I waved bye to T as they drove off to his last day of school, I looked at our flowers, glistening under the sun, wet from the overnight rain.

What started as small blooms, blossomed through the hubby’s care and nature’s sun.

I beamed with pride and happiness as the memories of the last year came flooding back.

The moments of seeing the hubby and T reading and doing homework together.

My Saturday and Sunday morning reading practices with T.

The pride T felt as he went up a reading level – exceeding the year-end target his teacher set for him in his Independent Education Plan.

We also highlighted and celebrated all of T’s gains in other areas. He had Bs across his other subjects, including a B+ for math.

To the hubby and I, As are wonderful but the most important part is consistent growth and T showed improvement from his previous report card where he had many Cs.

He still had 1 C in this report card for drama. But I’m not losing sleep. I know this kid can laugh, cry, scream and do the whole range of emotions when he’s motivated!

His teacher and CYW kindly agreed to our request for a year-end debrief.

We appreciated hearing their candid feedback and we were aligned in what his strengths, needs and areas of concerns for next year.

The hubby and I are worried how T will do without a dedicated support in Grade 2.

But we can only live one day at a time.

Like a garden, we will enjoy this moment of bloom.

We will celebrate his achievements, because summers – in the literal and the figurative sense – are short before winter arrives again.

We plan to have a super relaxing summer with T.

Like last summer, we asked his teacher to lend us a stash of DRA level books we can read with T. We’d like to devote 20-30 minutes each day for reading and learning.

Because routines are so important for kids like T.

His teacher, who is so organized, also prepared a binder of worksheets for T that we plan to tackle with him over the summer, in a relaxed pace.

But for this upcoming long weekend, we’re letting the reading and learning go.

Because we’re kicking off summer fun tomorrow morning – on the first day of summer break – with our first camping trip since the pandemic!

T helped me pull our camping gear from our basement crawl space. They’ve gathered a ton of dust!

We all can’t wait to get up tomorrow and head off on our adventure!

Stewing Over Things

Letting emotions stew is never productive. Stewing with tofu is a healthier outlet!

One of the most challenging aspects of parenting a child with FASD are when they get emotionally disregulated.

T’s meltdowns are hard. There are days when the hubby and I feel we are being verbally and physically threatened and attacked.

As life with T teaches us, focus on the big picture. The positive moments far outweigh the challenges.

There is a reason for why T has these moments and we’re learning to better support him before, during and after these moments happen.

One blessing of individuals with FASD is every day is a fresh start. In our experience, T is not one to stew much over things.

For better and for worse, he moves on – even though the rest of us are still reeling from his explosive moments.

It takes me longer to process things, especially when the time and space in my life to do so are so limited.

Writing continues to be my outlet to reflect and to process – so thank you to the blogger community for having coffee together.

Cooking is another outlet. Prepping ingredients, hearing the sizzle in the wok, and smelling the aroma fill the air are soothing to the soul.

Stews and stewy dishes are especially comforting. Here are a few recent dishes that I made:

Mapo Tofu

Mapo tofu is a popular spicy Chinese dish from Sichuan province. Key ingredients are firm tofu, minced pork, sichuan peppercorn and chili oil.

It’s one of my favourite comfort meals and I was glad to finally make my own using this Wok of Life recipe.

Kimchi Jiggae

Jiggae is a type of Korean stew and the foundational ingredients are tofu, kimchi and gochujang (red pepper paste).

Kimchi jiggae is made with canned tuna or pork belly. I’ve made both many times – and made my recent one with pork belly.

Cà ri gà

Vietnamese goat curry is something I love to order at the restaurant. I stumbled across this chicken curry recipe and had to make it.

It was interesting cooking using lemongrass. It turned out pretty well. I will try this recipe with lamb next time!

Silkie Chicken Herbal Soup

Silkie chicken (aka black chicken) soup was a comforting medicinal soup my parents made.

This was my first time making my own and I bought a pre-packaged herbal mix that included ginseng, goji berries and red dates – which made the broth soothingly sweet.

Braised Pork and Soy Sauce Eggs

Out of all the comfort foods I had growing up, this is at the top of my list. This is a staple in many Asian cultures and I recently used a Malaysian variation called Kong Tau Yew Bak.

As a kid, I thought it was a magical ingredient that made the eggs brown and so tasty. It turns out it’s just soy sauce! 😆

Cilantro Lime Rice

A good stew needs a warm bowl of rice. I don’t have experience making Mexican food (unless you count opening a bag of nachos and a can of salsa!)

I stumbled across this Cilantro Lime Rice recipe and had to make it because I didn’t know such a juxtaposition of ingredients existed. It was a perfect match for the braised pork and soy sauce eggs.

Chinese Cucumber Salad

A good stewy dish needs not just rice but a pickly salad.

To be honest, I only made this side dish cuz it looks so cool. As this Instagram recipe shows, it’s easy to make but looks impressive.

As I’ve written in the past, cooking helps me keep cool as a cucumber through the trials and tribulations of FASD parenting.

The Power of Anticipation

After starting his countdown right after Christmas, the big day is finally near.

T had a blast spending Christmas in New Brunswick with his cousin. When we got home, he asked how many more days till her visit this July.

During a recent bedtime, I told him that it was 45 days until she visited us in July. He got all excited and took a while to fall asleep.

He’s been counting down every day since.

As a parent of a child with FASD, I’ve learned that maintaining a positive mindset helps weather the disorienting storms and deflating setbacks.

As explained in this PhillyVoice article, creating things to look forward to helps provide positive mental and emotional boosts to motivate one through challenging times.

As an FASD parent, each day can have moments that go sideways and sometimes explode.

The power of anticipation helped us weather the two years of the pandemic by providing emotional buffer and motivation.

Whether it was scheduling self care days, our roadtrip during the first pandemic summer, or our recent Spring Break, it gave us something to look forward to away from the stress of simultaneous parenting, virtual schooling, working, and managing my Mom’s appointments.

There are also simple economical ways to build anticipation. For me, these include daily lunch hour walks during the work day with the hubby, Friday Netflix nights or a weekend hike with T.

In building moments of anticipation, it helps me reframe things in my life and take stock of how the blessings far outweigh the challenges.

The hubby and I started planning our summer back in the dreary days of winter and it helped the last few months fly by.

We’re looking forward to our first camping trip since the pandemic, the outdoor pools opening (next week!), and spending time in nature.

When I recently told T about our camping trip and how many more days until he visited his Grammy and Grandad, he lost it in the car.

“Today is going to be my last day on Earth,” he said.

“Oh, why is that?” I asked.

“I’m going to die tomorrow of happiness and excitement.”

A previous visit to Grammy and Grandad’s.

Reading and Parenting with Pride

When those in power seek to maintain the status quo, they target access to information.

I read with dismay and anger about Republican leaders seeking to ban books that discuss diversity, specifically 2SLGBTQ+ people, and to ban school curricula that discuss critical race theory.

Reading is one of T and our favourite activities.

In addition to being enjoyable, it helps him build his knowledge and literacy and to open his mind to the world.

Todd Parr’s “Family Book” was one of the earliest picture books we read with T that talks about families in all their forms.

“And Tango Makes Three” is another book in T’s collection that tells the real life story of two male penguins that raised a baby.

“And Tango…” was once banned for its “homosexual overtones” and was the most challenged book in US schools and libraries in 2006, 2007 and 2008.

Conservative politicians are targeting and banning books that talk about gay, lesbian and trans people under the guise of protecting children from inappropriate sexual content and from being groomed for inappropriate lifestyles.

I encourage anyone to read these books and give a rational and common sense reason as to how they are inappropriate.

It must be these deviant penguins! 🙄

As someone who grew up with stories, movies and media imagery about heteronormative life, I turned out very gay. How odd is that?!

I think most politicians know these books are harmless but they use their message to grow and embolden their base.

For decades, LGBTQ people have been labeled as mentally ill, predators, sinners – and in 2022, homophobia and transphobia are packaged as “concern for children.”

Do you know what hurts and even kills children?

It’s not books nor drag queens reading to kids.

Guns kill kids. Yet no Republican is risking their re-election by lobbying for gun control.

In what mad world is a rainbow more dangerous than a gun?

It’s also interesting to watch conservatives get flustered about critical race theory.

Jerry Craft’s graphic novel, “New Kid”, is a recent example of an award-winning book targeted and banned for exploring issues around race.

It tells the story of a 12-year-old boy, who experiences culture shock when he enrolls at an affluent private school.

Access to knowledge and critical thinking are dangerous to those that do not want the status quo to change – a status quo that benefits their narrow-minded exclusionary beliefs.

When information can’t be controlled, there is an effort to discredit it as “fake news.”

There is an effort to create an “other” to unite followers against, because it’s easier to create a distraction than to do actual good.

Fundamentalists can champion their efforts under the guise of protecting children from imaginary predators, they can deny or try to rewrite a history of racism – but hate is hate.

Love always finds a way in the end.

We can and we must do better.

In our home, that means sharing books and messages that affirm and uplift others and to help spread positive messages.

It means being open to learning and re-learning.

The parent of one of T’s peers at daycare recently shared with the hubby and I that they are a trans man.

It was a good re-learning moment for me as I had wrongly assumed their gender.

We excitedly chatted on the park bench about summer plans, as our kids played together in the playground.

Part of the Pack

A coyote and pine cones. Unlikely ingredients for friendship for a 7 year old.

With warmer Spring days, T and I play outside after daycare pickup before heading home.

There is a group of moms and kids that are there every day.

It’s amusing watching T try to initiate play. He likes to be chased but these kids are younger and stick to their activity of stockpiling pine cones.

T often struggles with personal space, social cues, and impulse control, so his strategy to get their attention is to take their pine cones and run.

This would annoy the kids. On one recent outing, one boy saw T arrive and whined, “Oh no, not that kid again.”

This upset T and he vented during bedtime about how rude the kids were.

T is quick to point out others’ faults but fails to see these same faults in his actions.

The hubby and I try not to be helicopter parents. He has to learn to figure things out with ongoing coaching from us.

So I asked T to reflect on how his own actions may cause the kids to act that way and what he can do differently next time.

This past Wednesday, there was much excitement when we arrived at the park.

One mom said there was a wolf in the field.

I squinted my eyes at the animal lying down. It looked like a fox. Then it stood up. Yup, a coyote.

The kids were all excited and I pointed out the animal to T, who went from 0 to 100 in a flash.

I told T that coyotes are dangerous and we need to keep a safe distance and not agitate it.

So Mr No Impulse Control started shouting at the coyote and throwing pine cones at its direction.

The kids gathered close to T, who told the kids the coyote was dangerous. They huddled close together and it felt like a bonding moment.

On Friday afternoon, as T was swinging by himself, the kids went up to him and offered him pine cones from their pile. One kid at a time.

T stockpiled them on the side and kept swinging.

After he jumped off the swing, he approached the kids, who let him into their group play.

The hubby and I let T stay and play for while.

At bedtime, T asked about the kids in a positive way. The hubby and I praised him for a great afternoon of play and we asked him if it felt good to have a positive interaction with them.

We then gave him a hug and turned off the lights.

Gym Coach

I will soon add wannabe basketball coach to my CV.

As a student, gym was not my strong subject. I did well in sports like cross country and baseball, but basketball terrified me.

Similarly, participating in class, including gym, is an ongoing struggle for T in Grade 1, his first full year of in-person learning.

T’s gym teacher and CYW noted this Spring that T enjoys and is good at basketball.

The hubby and I try to take a strengths-based approach to learning for T. It’s important to build on things he feels good about to buffer the difficult moments in school.

Part of this requires both T and us to adopt a learning mindset: to be willing to try new things, make mistakes, and learn together.

We recently bought T his own basketball to practice and play with during weekends and over the summer in the nearby school.

Do I know what I’m doing? Not really, but we’ll learn and have fun together!

Basketball net for kids at nearby school.

Physical activity and the outdoors provide a great way for kids like T to burn excess energy and regulate emotions.

T picked up biking again after showing no interest last summer. We’re optimistic the training wheels will come off this summer.

Outdoor pools open this month! The hubby is registering T for his first lessons and looking for instructors that support kids with ADHD.

Last Sunday, we took T to his first rugby game.

T’s gym teacher recently invited rugby players to present to his class and they invited the school to their final game of the season.

It was really fun to do something different during our often quiet weekends at home.

We had no idea what the hell was going on, but watching buff guys colliding against each other was appealing. 😆

Toronto lost the game and it gave T a good introductory lesson in sports life:

You don’t always win, but you keep trying, have fun, pick yourself up, and move on.

Just wait till T becomes a Maple Leafs fan!

Shifting Sands: 4 Days in Dubai

Ten years ago, we visited the unique city of Dubai in the United Arab Emirates.

After an unforgettable trip to India, the hubby and I made a stop in Dubai on our way back to Canada.

We made wonderful memories in our short four-day visit.

We stayed near Jumeirah Beach.

The white sandy beach is located along the coast of the Persian Gulf and we swam in its soothing saltwater every day.

It was nice to be reminded of Canadian comforts, like Tim Horton’s…

… which sells potato chips!

We did a bus tour, which allowed us to get a quick snapshot of the city highlights.

There was a lot of construction and I can only imagine what the skyline looks like now.

I loved the futuristic turtle shell design of the subway stations. We later tried riding the automated driverless trains.

The bus tour took us to Palm Island, a man-made island built off the coast of Dubai.

The homes on the island were beautiful and I loved the Middle Eastern architecture.

We walked by Burj Al Arab, reputed to be the world’s only 7-star hotel, with its own helipad.

The days were very hot and humid and we cooled off at Dubai Mall, which had…

… a skating rink …

… a massive aquarium with shark tanks …

… and an indoor ski hill with ski lifts!

The hubby went snowboarding while I sipped a cold drink at the food court.

It’s tradition to scope out unique offerings at McDonald’s in other countries. The McArabia Chicken and Chicken Big Mac were yum!

We visited Dubai’s most well-known attraction, Burj Khalifa, the world’s tallest building at 2,722 feet.

You may have seen Tom Cruise hanging out on top of it in Mission Impossible 4.

We walked far way to get it to fit in this picture.

The night views of the city was awesome.

Do you see a cross and a heart below like I did?

This message below, posted on one of the exhibit spaces inside the building, still resonates:

“The word impossible is not in the leader’s dictionaries. No matter how big the challenges, strong faith, determination and resolve will overcome them.”

The highlight of the trip was the sunset desert safari on our last day.

We rode a camel…

… saw a falcon up close…

… enjoyed a barbecue in a Bedouin camp …

… with amazing music and dancing.

Sometimes, when I look back at photos from life before T, it was so carefree.

These days, the sand we get pour out of T’s shoes from overzealous play in the school sandpit.

But I have nothing but gratitude for what came before T and what is in front and ahead of us.

I am thankful the hubby and I explored some of the world before starting a family.

Every sight, sound, taste and smell shaped us into the people that are now T’s parents.

We draw from every memory to inspire and inform us through the successes and setbacks.

What always stuck with me about Dubai was how this city’s ambitions were built on shifting sands.

As with everything in our life with T, I continue to see the parallels and metaphors.

“Maybe Pick Another Dream…”

Every morning, as part of sending T off to school, we give him a post-it affirmation to read in the car.

And yes, it’s usually sickeningly positive! 😆

With the topic of dreams still on my mind, we wrote him this message this morning: “Always believe in yourself and your dreams…”

After he read it out loud, he shared, “I dreamed I went to jail last night.”

I swiftly told him to pick another dream to believe in.

I also had to force myself to not crack up.

Children with FASD often take things literally – and this was one of those hilarious moments.

I gave T a kiss on his head, shut the car door, stood on our front steps and waved at him as the car backed out of the driveway.

“Bye, I love you,” he shouted out the open window.

“I love you, too,” I shouted back, as the car drove off to school.

Travel in Light Years

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Listen, can you hear that distant calling

Far away, but we’ll be with you soon

Rocketing to outer space in orbit

Take us to the popstars on the moon…

Travel in light years…”

– Light Years

Thank You For Being a Friend

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

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

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

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

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

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

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

“Thank you for being a friend

Traveled down a road and back again

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

And if you threw a party

Invited everyone you knew

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

And the card attached would say

Thank you for being a friend.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Giving Tree

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wildflower

What if we let the weeds grow freely?

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

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

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

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

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

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

I wouldn’t have him any other way.

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

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

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

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

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

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

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

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

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

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

And that’s ok.

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

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

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

It turns out baby rabbits were nesting inside.

T stared at the babies with delight and care.

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

Sharing A Child’s FASD Diagnosis with Them

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

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

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

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

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

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

We believe that honesty is key.

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

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

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

We will take a strengths-based approach.

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

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

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

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

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

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

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

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

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

Community Resources

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

Do you have a recommended resource to add to the list above? Please e-mail me at mylovablepest@gmail.com.

Mother

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

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

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

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

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

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

Mothers Day was wonderfully relaxing.

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

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

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

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

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

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

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

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

Advocating For Your Child

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

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

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

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

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

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

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

Understand how the system works

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

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

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

Build a network of allies

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

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

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

Preparation is key

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

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

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

Diplomacy paves the way

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

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

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

Speak Up

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

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

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

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

Focus on the Long Game

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

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

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

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

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

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

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

Life is a marathon and not a sprint.

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

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

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

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

Ice Cream Truck

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Waiting for ice cream at the Bluffs last Sunday.

Heaven and Hell

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

I believe in God but am apprehensive about organized religion.

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

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

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

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

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

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

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

At least he knows the opposite word for heaven!

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

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

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

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

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

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

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

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

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

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

Playing Sidekick to My Incredible Hulk

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

T as Venom for Halloween 2019.

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

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

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

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

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

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

I reminded him it was important to keep trying.

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

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

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

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

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

Hitting the Reset Button

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To reset.

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

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

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

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

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

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

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

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

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