Dreaming of Camping Adventures

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

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

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

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

I believe the outdoors are great for kids with FASD.

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

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

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

Summer 2016

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

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

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

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

T’s first time waking up at a campsite.

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

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

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

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

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

Summer 2017

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

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

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

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

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

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

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

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

Summer 2018

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

I mean, look at this lovely rocky facade.

And this lovely small island we stopped at.

T enjoyed swimming during this pit stop.

And a little snooze on the paddle back.

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

This grilled pineapple was amazing!

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

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

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

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

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

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

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

There are many more memories to be made!

Kids Keep Us Grounded

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

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

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

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

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

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

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

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

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

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

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

Then I heard T screaming and throwing a fit.

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

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

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

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

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

Disconnecting to Move Forward With a Clearer Head

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

Special needs parenting often leaves caregivers feeling perpetually foggy headed.

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

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

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

I returned home with renewed energy for T.

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

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

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

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

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

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

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

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

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

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

T could spend hours digging up sand.

The Power of Inclusion

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Although this homemade carrot cake by the hubby was delicious!

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

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

The past week’s spelling test.

Escape Room

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Waves

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

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

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

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

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

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

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

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

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

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

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

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

But you get back up and you do it again.

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

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

“I get back up and I do it again,

I get back up and I do it again,

I get back up and I do it again,

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

– “Why Do You Love Me?” by Garbage

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

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

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

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

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

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

At one point, he said, “I love you.”

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

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

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

The Boy at the Waterpark

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

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

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

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

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

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

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

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

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

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

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

T loves these mango slushees.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Spring Break

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

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

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

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

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

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

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

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

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

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

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

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

The last two days have been wonderfully uneventfully relaxing.

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

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

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

Finding the Bright Spots

Perfection is the enemy of progress.

I thought about this expression by French philosopher Voltaire after T broke his four-week streak of perfect spelling tests.

T’s teacher recently introduced Words of the Week; six words given on Mondays that he practices for a test on Fridays.

T crushed the first four weeks and we posted his tests proudly on our fridge.

Last Friday, he broke his streak and came home with a 5 out of 6.

The husband gave me a faux sad look and I told T he still did great and we posted the test up proudly with the others on the fridge.

The moment made me think of this video.

Writer Dan Heath muses that we often obsess on things that don’t go well and he encourages us to obsess instead about things that are going well and to scale up these bright spots.

I’m gonna keep it real. The following Saturday morning, I walked by the fridge and looked at that damn word “Us” that T misspelled.

It irked me because spelling was one of the bright spots in T’s up and down school journey.

Thanks to his teacher’s creative ways to encourage kids – such as creating a keychain of words to practice in a fun way – T is motivated to do well.

He even used it as a bedtime delay tactic last week when he got out of bed and said he needed to practice his words.

As his parent, I want him to have many chances to feel good about school and himself.

Then I realized how silly I was being. T was doing well in spelling and the hubby and I are gonna build on his progress and try to spread his enjoyment and motivation into other areas of school, such as reading.

And I walked away from the fridge.

Don’t get me wrong: doing well on tests is important. But I want T to focus on doing his best, learning and growing, rather than perfection.

The latter is focused on a fixed state in time; the former is focused on continual change and progress, also known as growth mindset.

As life with T reminds us, every day is a new chance to try again.

This Monday, T’s teacher announced that Words of the Week would be a review of the 30 words from the last five weeks; she would pick six random words for the test.

The gauntlet was thrown. Our family’s honour was on the line. Cue Rocky training music.

Jokes aside, we kept it chill with our no pressure approach of practicing two nights a week, including before the test.

Then we put it out of our minds and relaxed.

This past week, we also made adjustments to his medication – increasing the afternoon dose of methylphenidate – and as anticipated, there were a few bumpy moments.

By Friday, we were ready for the weekend.

As the hubby and I unpacked his school bag last night, we saw his spelling test: 6/6!

We cheered loudly and told T we’d celebrate with his dinner of choice. He picked McDonalds.

There was another surprise in his bag: a beautiful painted art he made in class (pictured up top).

I held it up against the glow of the golden hour sun and the moment felt like a bright spot in our week.

Every bump along the way from Monday to a Friday vanished into the past.

We complemented T on his work and he smiled and shouted, “It’s a masterpiece!”

Bedtime Stories We Loved: Volume 3

Reading to T as he rests his head on my shoulder is a joyful way to unwind.

We’ve been reading at night with T since we adopted him at 14 months.

As noted by the American Library Association, young kids that are frequently read to are more likely to recognize letters, have word-sight recognition, and understand words in context.

More recently, it’s nice to see T becoming more active in asking questions, retelling bits of the story and occasionally asking to read along.

In the last year, we are focusing hard on building his reading and decoding skills.

We’re thankful his teacher gives daily reading homework. Combined with bedtime reading – where there is no expectation other than to listen – we will slowly grow his skills.

As a follow up to my posts in 2020 and 2021, I’d like to share a selection of bedtime stories we’ve enjoyed in the past year.

It’s Okay To Be Different by Todd Parr

Todd Parr’s books are filled with positive messages that celebrate diversity and his joyful art reminds me of Keith Haring’s work.

This book was one of the weekly books T borrowed from his school library. I love the message that affirms to kids – with images of kids of all ages, sizes and abilities, from different backgrounds and family compositions – that it’s okay to be different!

The last time we read this, T asked to read. With the exception of a few words, he read it cover to cover on his own. The best part? One page stated: “It’s okay to be adopted.”

Creepy Carrots by Aaron Reynolds

As a horror enthusiast, I love that T is discovering a love of scary things.

This book is more funny than scary and is about Jasper Rabbit who loves devouring wild carrots, until they start stalking him. Is he losing his mind or is he being gaslit?

Beautiful illustrations bring this comical story – and its twist ending – to life!

Clifford’s Good Deeds by Norman Bridwell

I discovered Clifford books when my family immigrated to Canada when I was eight and it’s been fun introducing them to T.

T owns a collection of the first six Clifford books. He loves the idea of having a big red dog. The story about Clifford doing good deeds that go awry was particularly amusing to him.

Bon Voyage Mister Rodriguez by Christiane Duchesne

As T gets older, he is naturally asking bigger questions about life, such as death.

Books provide kids with safe spaces to explore hard topics. This story of Mister Rodriguez, who is only visible to children and sickly animals, is a surrealistic story that leaves things open ended for kids to interpret what happens after life.

Here We Are by Oliver Jeffers

T and I discovered the charming work of Irish writer and illustrator Oliver Jeffers through one of my dearest friends, who gifts T a new Jeffers book on every birthday.

Gifted to T for his 6th birthday, this story is narrated by a dad to his newborn about what they need to know about life.

As a parent, it made me realize just how much info there is to unpack for a little child. For T, he loved the quirky illustrations and the fun facts about space, deep ocean animals, and different cultures.

Happy Birthday, Big Bad Wolf by Frank Asch

Reading inspirations come from all places. This little book came with a McDonald’s Happy Meal, so it’s literally a tiny sized book.

It tells the story of the Little Pig who wants to throw a surprise party for the Big Bad Wolf, despite his parents’ hesitation. It provides a lesson about giving people a fair chance to prove themselves to others.

The Day the Crayons Quit by Drew Daywalt

The best children’s books are the ones that can be enjoyed by both kids and adults.

This wonderfully-illustrated book is about a boy named Duncan who receives letters from the crayons in his crayon box, either lavishing appreciation or complaints about his use of them. Duncan’s response is truly inspired.

Nibi’s Water Song by Sunshine Tenasco

The newest addition to T’s collection was gifted to him by his recently-departed CYW.

Books are great tools to educate kids about important social issues in relatable and non preachy ways. This story highlights the plight of Indigenous communities in Canada that do not have access to clean drinking water.

T loves to play at the sink – at home and school – for prolonged times, because he enjoys the sensory input of water. I try to balance indulging his play while guiding him to not be wasteful.

Into the Unknown

Step by step, the unknown becomes known…

Our adoption was finalized five years ago between Valentine’s and Family Day and is now always celebrated between these days.

On this Family Day, we went for a morning hike at Hilton Falls Conservation Area.

It was a beautiful sunny day and 1 degree compared to yesterday’s -12.

During our one-hour drive, we played “Into the Unknown” by Panic at the Disco from Frozen 2, one of T’s favourite songs.

When we first adopted T, he was on the cusp of learning to walk. We are thankful we got to experience that milestone with him.

Once he found his footing, he was always on the go and rarely sat still.

We were thrilled to introduce our love of nature to T, going camping before he was 2.

T is in his element in the outdoors.

It was nice to explore a new park and to experience our first winter hike.

I loved walking with tall poplar trees on either side, the warm sun reflecting off the snow.

We stopped to enjoy the whimsical…

“Do you want to build a snowman?”

… and admire the beauty all around us.

As we hiked in silence, I thought about the road travelled together.

Little did we know back then what an adventure this was going to be – the joys, heartache, laughter, uncertainty.

My mind continues to process the recommendations from his FASD diagnosis report and the next unknown that lies ahead.

But I promised myself I was going to enjoy our family time and save that work for another day.

Because like a hike in the woods, you somehow always find your way.

Sometimes by intuition and determination.

Sometimes by following the footprints and markers that others have left behind.

Sometimes by following others on the same path as you.

Sometimes by venturing off the beaten path and charting your own way.

But if you take the leap of faith and dare to venture into the unknown, you will always find something worth your while.

Day by day, step by step, breath by breath, the unknown becomes known. The uncertain becomes certain. The afraid becomes unafraid.

Helping Kids Navigate Difficult Change

Change is hard for kids. It was heart wrenching to see T process an unexpected change this week.

Change is harder for kids such as T.

If you hang out with the hubby and I, you’ll notice we give T ample warnings – 10, 5, 1 minutes before we move to the next activity, especially if T is currently doing a preferred activity.

It may seem excessive but sudden transitions often don’t go well with T, so we are proactive at using transitions to mitigate tantrums.

A few years ago, we learned about social stories and how these visual tools can help kids who struggle with social change.

In T’s case, his Montessori support created a social story to prepare him to move to a new classroom and teacher.

We read it several times the week before the change. He loved it so much it became a bedtime story staple for months after!

More recently, the pandemic brought a doozy of changes – lockdowns, virtual schooling, mask wearing, distancing – at an unrelenting pace. For adults, much less a child, it was overwhelming.

Big Unexpected Change

After recently receiving T’s FASD diagnosis, as much as we expected it, I didn’t want any more big life changes for a while.

Two weeks ago, T’s wonderful Child and Youth Worker, who has worked with T the last year and a half, let us know she got a new job and would leave very soon.

We were very happy for her moving to a dream role, but it still sucked because this was a huge loss for T. She was so good at her job and T and our family loved working with her.

My mind shifted into change management and how to set up the best transition for T.

Even though I knew it was a long shot, I asked if she could start her new role after Spring Break in four weeks. The break may give T a mental space between her and the new CYW.

Nice try but no cigar.

I asked if there could be a transition where both her and the new CYW worked together with T.

Thankfully, with the principal’s support, a new CYW was brought on to allow a full week transition with both CYWs this week.

The hubby, CYW and I discussed how we would break the news to T. We‘d tell T this past weekend and then she‘d tell him on Monday.

We kept the message simple: she’s leaving because she got a new job; T didn’t do anything wrong; she loves him; we will keep in touch.

We gave staff at T’s after school daycare a heads up, so they can be aware of and keep an eye out for potential behaviour symptoms.

While we were still sad with this change, it felt good to have a change plan in place.

When Best Laid Plans Don’t Go As Planned

The hubby and I broke the news to T on Sunday night after a fun afternoon of sledding.

He seemed to take the news ok and was glad to hear he would still see her this week.

Then the bomb dropped on Tuesday afternoon. His CYW let us know that it was her last day instead of the end of the week. It was a decision that was out of her and the principal’s hands.

Poor T was caught off guard like a deer in the headlights. He repeatedly told her, “But you said you had two more days.”

He cried during the bus ride from school to daycare. The empathetic staff let us know that he ran out into the hallway and around the school and was not himself.

Tuesday night was challenging. He was moody and emotional. During bedtime, he repeatedly talked about how sad he felt.

As a parent, I think it is important to let kids have the space and time to feel the fullness of their emotions.

But it still breaks my heart to see him sad. Processing big emotions with so little life experience as context is hard.

As I learned with change theory, there are four stages of acceptance – denial, anger, acceptance and commitment.

I see T experiencing the denial and anger stages right now.

Always Look Forward

The hubby and I are focused on guiding T forward, even though we feel the loss too.

The first day without his former CYW was expectedly up and down. His new CYW let us know he told her many times he felt sad.

On the bright side, we are thankful the new CYW is continuing to use the effective strategies that are already in place.

It also sounds like she has the savy and skills to recognize T’s boundary testing behaviour and to respond appropriately.

So despite the sudden and rocky change, there are many positives to focus on as we all help T move through this significant change.

Thankfully, we have a long weekend ahead and we are focused on relaxation.

Fingers crossed, we plan to have a curbside meetup with his CYW so T can have a calmer proper goodbye and both of them can have better closure, as I empathize this sudden change was difficult for her too.

Spring Break is around the corner and the three of us are using that as motivation to get through these next few weeks.

After all, if there is one constant thing in life, it’s change.

Cool As A Cucumber

Making cucumber kimchi and sledding down icy hills helped us keep it chill this weekend.

Six weeks into the new year and I’ve been working hard at my resolution: to be the calm in T’s storm.

It’s a life lesson I wish I could’ve applied earlier in my parenting journey – especially now that T’s recent FASD diagnosis confirmed emotional regulation is an area of impairment.

You can’t change the past and can only focus on the blank slate of the now.

I recently saw this image posted on a FASD parenting group and it resonated with me.

When I respond with anything but calm during T’s fight or flight moments, it’s throwing gas into a forest fire. It never turns out well.

The hubby and I have many recent conversations about how much better our mornings and evenings are when we don’t react during T’s moments with anything but calm.

Sure, I’ve bitten half my tongue off, but seeing a positive change in T has been gratifying. It’s paying off in dividends.

Even his CYW says he’s using better strategies and making better choices in school.

There are bumps throughout each day, don’t get me wrong, but I’m focusing on the big picture.

Oi Kimchi

Speaking of keeping it cool as a cucumber, I made Oi (cucumber) Kimchi this weekend, one of my favourite side dishes commonly served at Korean restaurants.

I found this @MyHealthyDish recipe and was excited at how easy it was to make. I also had all the ingredients at home.

I chopped six baby cucumbers into thin slices.

Then tossed it into a bowl and mixed it with 1 tablespoon of salt. I let it sit for 5 minutes to let water seep out of the cucumber.

After draining the water, I tossed in 1 sliced onion, 6 stalks of sliced green onions (green part), and 6 cloves of minced garlic.

Then I added in 2 tablespoons of gochugaru (ground dried red chili flakes), 1 tablespoon of sugar, 1/4 cup of rice wine vinegar, 1/4 cup of sesame oil and a splash of toasted sesame seeds.

For the best results, I let it sit overnight in the fridge and voila.

I prepared it on Friday night, the most soul-soothing way to unwind after a work week.

I served it on Saturday for dinner with jasmine rice, kimchi and grilled steak.

Sunday Sledding

On Sunday, after breakfast, with zero fuss, T sat with me and zipped through his learning activities.

He did such a great job with his three beginning consonant sound assignments.

These are the parenting wins I hang onto and that motivate me to keep going.

By the way, does this image circled in red below look like a plate? I had no idea what the hell it was and T looked at me bemusedly and blurted out quickly, “It’s a plate!”

Rings of Saturn was my guess!

After brunch with family, we went for an afternoon of sledding at the park.

With wind chill, it was a blistering -15 degrees. Who needs Botox when you have Canadian winters?

The giant hill was covered in ice and boy did it make sledding quite the rush.

As T and the hubby zipped down the hill and past me standing up at the bottom, my hands buried deep in my warm jacket pocket, I smiled and cheered them on loudly.

14 Days In Peru, Argentina and Brazil

A surreal encounter with Christ the Redeemer reminds me to always keep the faith.

In Fall 2015, the hubby and I ventured to a part of the world we had never been to.

We didn’t know it at the time, but our first visit to South America would be our last hurrah before parenthood.

Revisiting these photos, while processing T’s recent diagnosis, reminded me of a faith-affirming moment in Brazil.

Lima

After an 11-hour flight, we arrived at Lima, the capital of Peru and one of the largest cities in South America.

We had one full day of sightseeing and enjoyed the beautiful architecture and colourful buildings.

Vibrant flowers sprawled everywhere.

We saw olive trees for the first time. Look at those gnarly trunks and twisty dance-like branches.

The unexpected highlight was the Central Park in Miraflores. There were wild cats everywhere!

This girl picking up a cat for herself still makes me chuckle.

Cuzco

Cuzco is a city located in the Peruvian Andes and the former capital of the Inca Empire.

The majestic mountains and jaw dropping view still blow me away.

A friend and I were obsessed with the Llama, Llama children’s books at the time and imagine my surprise at seeing one in person!

Walking through the village in the mountains and through narrow stone pathways felt like stepping back in time.

Visiting a salt mine was a fun experience. We bought small pouches of Peruvian salt that we still use sparingly these days.

I guess this was an ancient concert hall?

We loved the beautiful Spanish architecture – and not a skyscraper in sight!

Ollantaytambo

Ollantaytambo is a village in Peru’s Sacred Valley. We stayed for two days to acclimatize to the altitude before visiting Machu Picchu.

Ollantaytambo is known for the ruins of an ancient Inca fortress.

The hike through the hillside stone terraces was breathtaking.

These were guinea pigs in a local’s home. I will not share the photo of the hubby’s dinner!

Machu Picchu

Considered one of the new Seven Wonders of the World, words can’t describe how breathtaking Machu Picchu was in person.

This ancient 15th century Inca fortress is located almost 8,000 feet above sea level.

You could do a four-day hike to get there or do a daytrip and take a train from Ollantaytambo then ride a bus up a narrow terrifying mountain path.

Exploring the ancient ruins was an incredible experience and I marveled at the ingenuity and magnitude of their engineering.

Here’s one of the living quarters.

We stopped regularly to take in the views. Our heads were literally in the clouds.

Iguazu Falls

After a short flight, we spent the next two days exploring Iguazu Falls.

Iguazu Falls consists of 275 falls and this stretch of double layer waterfalls captures its vast stunning beauty.

The falls are situated on a border shared by Argentina, Brazil and Uruguay.

About 80% of the falls are in Argentina. We we spent a day exploring them by hiking and by boat at Iguazu Falls National Park.

This was one of the walkways that took you to the edge of one of the falls.

This was me channeling Eva Peron. That kid looking at me probably thought I was an idiot for looking at Brazil while lipsynching “Don’t Cry For Me Argentina.”

We explored the Falls on the Brazil side the following morning, which had spectacular views of the Argentinian falls.

There were many calmer stretches and this outdoor restaurant was one of them.

We didn’t eat there but we did enjoy a delicious lunch at one of the packed cafeterias.

Argentina is known for delicious steaks. We had ten minutes to eat because we were behind schedule and I inhaled every bite of this meal that I still dream about.

Rio De Janeiro

Our final stop was Rio De Janeiro in Brazil, a city I had dreamed of visiting.

Over four days, we took in many of the local sites, including Sugarloaf Mountain.

The views atop of the seaside city were awesome.

These beautiful stained glass are part of Rio De Janeiro Cathedral, which is dedicated to Saint Sebastian, Rio’s patron saint.

This is Copacabana Beach, the region that the New York nightclub in Barry Manilow’s song Copacabana was named after.

We toured the favelas, which were featured in a chase scene in the film Fast Five.

The guide regularly reminded us we were in a dangerous place. We did not dare doubt her.

We made it out safely and enjoyed a relaxing final afternoon on the beach.

Keeping the Faith

Less than six months after our trip, T came into our lives unexpectedly and life took us on a different journey over the last six years.

As I processed T’s recent FASD diagnosis, I looked back at old photos and stumbled across our South America trip.

I recalled a memory from Rio de Janeiro.

On a rainy afternoon, we visited Christ the Redeemer, situated atop Corcovado Mountain.

Riding the tram up, the fog grew thicker and the nearby tree branches looked dream like.

When we got to the visitor centre at the top, it was raining heavily and the mountain top was covered in thick fog.

Half of our group chose to stay inside, complaining they couldn’t see anything.

Indeed, looking out, I could not see the stairs that led up to the 100 feet tall statue.

The hubby and I ventured out, even though the guide warned us we may not see anything.

As we walked up the stairs, the rain slowed down and as I inched to the top, He emerged from the fog, hands opened wide, looking down at all who stayed committed.

It was one of the most surreal experiences of my life and reminded me to always keep the faith.

In the last six years, our international travel has slowed down – raising a child ain’t cheap! – although we hope to explore the world with T when he is older.

These days, we don’t need to travel 8,000 feet up a mountain to have our breath taken away.

Smaller things make my heart soar. Like T crushing his spelling test this week, earning an “Amazing!” from his teacher, and his proud smile when he sees it posted on the fridge.

Our amazing boy reminds me everyday to never fear the rainy days, to journey through uncertain fog, and to always have faith.

The Diagnosis

After 5.5 years, we’ve answered a longstanding question about our son’s life and then uncovered more questions.

When T was 18 months old, he received a prognosis of at-risk Fetal Alcohol Spectrum Disorder (FASD).

It’s been quite the journey since as the hubby, T and I experienced the highs and lows of life with a little understood invisible disability.

We continue to be blessed with amazing supports, including school and community services that have enhanced T’s life.

His developmental pediatrician had advised to wait until T was older to be formally diagnosed.

Last November, over five years after receiving T’s prognosis, our family began the process to have T formally assessed.

The Assessment Process

In early November, the hubby and I had a virtual in-take appointment with the organization that had supported our family since T’s prognosis.

Among those present were the psychologist who‘d complete T’s psych assessment and T’s developmental pediatrician who’d complete his medical assessment.

We had an open conversation about T’s strengths and areas of concern.

Three half day in-person appointments took place – full day if you include the drive! – over November and December and one virtual consult in January to complete T’s psych assessment.

The team asked us and T’s teacher to complete several lengthy questionnaires. T’s teacher was also interviewed.

It was important for the hubby and I to be honest during this process.

While it was hard to see the answers T’s teacher provided – including how she assessed T’s relationship with peers and how she was concerned T didn’t look happy at school – we appreciated her honesty.

Receiving the Diagnosis

In late January, the hubby and I reconvened with the assessment team to review their findings.

The team assessed 10 brain domains affected by FASD, which include cognition, memory, academic achievement and adaptive skills.

To meet the criteria of FASD, a minimum of three impairments must be identified.

The assessment identified T had significant impairments in executive functioning, attention and focus, and emotional regulation.

With these three impairments, and knowing T’s pre-natal alcohol exposure, the team concluded that T met the criteria for FASD.

Processing The News

The assessment team asked the hubby and I about what we thought and felt.

I got one word out and burst into tears. The rush of emotions was unexpected.

The hubby and I went into the meeting hoping for a diagnosis. To be frank, we would’ve been disappointed if there was no FASD diagnosis.

So on one hand, the diagnosis validated our home and school experiences from the last few years.

On the other hand, I felt deep sadness, because FASD is not an outlook anymore. This is reality – even though we’ve always known deep down.

My sadness was not about having a child with a disability. It was being reminded the journey ahead will be hard for our sweet boy.

A few weeks later, I am at peace with the diagnosis. The hubby and I agree this is ultimately a great and freeing thing for T.

Looking Ahead

The diagnosis does not change our unconditional love for T. It strengthens our desire to help him live his best life.

Having a diagnosis will open doors to continued supports in school and the community.

It provides a tool to advocate for T’s behalf and to educate others to understand his challenges from the context of a brain disability rather than behaviour.

The diagnosis will help us advocate for the appropriate interventions that address T’s challenges and help reduce the risk of potential secondary issues, such as mental health problems, disrupted school experience, drug and alcohol problems, and trouble with the law.

The hubby and I are still digesting the detailed assessment report.

The team provided many wonderful recommendations – for home and school life. We intend to action on as many of them as we can.

We shared a modified report with the school – with T’s lengthier personal history removed. We feel that being open demonstrates our genuine intention to work collaboratively with them to identify the best solutions for T.

It is very helpful that one of the recommendations from the report was that T will require significant supports in school.

I have so many questions in my head.

One key question is how and when do we share his diagnosis with T – in a way that empowers him rather than crushes him.

It feels overwhelming to think about it.

But as life with T reminds us on a daily basis, we can only take it a day at a time.

And so, the journey continues…

“At least he said, ‘Please’!”

Be clear about what you ask for.

The photo above was taken when T was 1 and attending an Early Years program, part of our routine to help develop his speech.

He’s come a long way since!

These days, I appreciate that T verbalizes his feelings, rather than internalizes things. He’ll often let you know exactly how he’s feeling.

This can also be a challenge. In the last year, he’s used words that are provoking.

Depending on how far his mood has unregulated, the hubby and I have been called “idiot,” “dummy,” and he’s even called me “a fucker” once. You can imagine my reaction!

In these situations, I remind myself to stay calm and that it’s a symptom of an inability to regulate his emotions.

It is easier said than done, especially when you are in public and you feel judged as a disregulated boy is screaming “Shut up.”

But we are lucky to have understanding people in T’s life at school and in our personal circle.

It’s one reason we are very open about T’s disability, because it puts context into his challenging moments.

We remind others the behaviours are symptoms of a kid with a brain disability that makes regulating his emotions harder than for an average kid.

At home, we’re working to help T find alternative ways to channel his frustrations, impatience and anger.

One of the best ways, a lightbulb moment for us, is to stay calm when he is at his worst.

Again, this is easier said than done. It seems counterintuitive to most adults, because they’d say we’re letting T get away with bad behaviour.

Recently, T started a new thing of telling us and daycare staff, “I am going to turn into a monster” when he is feeling frustrated, usually when he’s not getting his way.

I often stifle my laughter as I tell him that I think he’s already turned into one.

While most people will find his phrasing concerning, I consider it progress, because he is recognizing his emotions and finding healthier ways to process them.

The hubby and I also use books and short videos to help T learn strategies.

This weekend, I came across this excellent video “Just Breathe,” shared by the wonderful Our Sacred Breath.

It features kids talking about how they feel when they get angry and suggests “breathing” as a way to deescalate.

I’ve bookmarked this video, created by Wavecrest Films, to share with T one day soon.

The hubby and I try to be realistic. We know this will be a long journey.

We are thankful for how far T has come – feedback echoed by daycare staff – and that his positives outweigh the challenges.

At T’s positive moments, he is utterly caring, charming, funny, endearing and personable.

We celebrate every step and try to have a sense of humour at the missteps.

On a recent weekend, T was watching videos on the tablet. I gave him many transition reminders he will have to take a break to do reading work.

After my last reminder, he snapped back loudly, “Shut your mouth!”

I took a deep breath and replied calmly, “Use polite words.”

“Shut your mouth, please!” He shouted back right away.

Always one to look at a situation as half glass full, I thought to myself, “At least he said, ‘Please!’”

Writing Birthday Messages to the Future

Sometimes, you’re blessed with a day overflowing with love that you bottle it up for the future.

We had one of those days this week when our dearest T celebrated his 7th birthday.

T excitedly counted down the days till his birthday since it entered single digits.

If you want to teach a kid about subtraction, pose the questions as the number of days till their birthday or Christmas. It’s very effective!

T got up excitedly. When he saw the balloons, his face lit up with a smile and he ran to the hubby and I for a group hug.

We did a Mario and Luigi theme for the second year. Balloons were red and green and bunched in threes, like in a Mario Kart battle mode.

During drop off, the hubby said teachers, parents and classmates all wished T a happy birthday.

Mid morning, T’s Child and Youth Worker sent us a photo of a Paw Patrol birthday card that a classmate had given to T.

My heart melted when I read the message: “Happy birthday T, you are my best friend.”

While T was at school, I thought back to the first birthday we celebrated with him at age 2.

The hubby and I started a birthday tradition of writing a letter to T’s 16-year-old self that summarized the past year’s highlights – both the highs and lows.

After he turned 4, I started this blog.

I plan to give the letters and share this blog and his adoption book when he turns 16. We hope they will help him feel a complete sense of self and how far he will surely have journeyed in life.

Birthdays provide a great time for reflection.

If you’re lucky, you can tune out the noise, forget the minutia and focus on the big picture.

When I picked T up from his after school program, he carried a chocolate bunny the staff gifted him.

He asked if he could have some and I said he could have a small bite before dinner.

He and I have different ideas of what “small bite” means.

T asked for Pizza Hut for dinner.

T had to finish his reading and spelling practice before he could have his Dairy Queen ice cream cake and open his gifts.

I’m an asshole, I know, but it was the only way to motivate him to do his homework!

T received thoughtful gifts from his grandparents, CYW and our friends.

The hubby and I gave T a fort-making set, because it would help build his creativity skills while leveraging his love for fort making.

And what are the chances his grandparents and us got him the same birthday card!

When I look back at this period of T’s life one day, I will remember the challenges for sure, but moments that will stand out with crystal emotional clarity will be days like this birthday.

Days filled with love, joy, balloons and cake.

Making Popcorn

One freeing lesson I’ve learned is that every child’s potential pops at their own time.

You may have seen this meme – the photo of popcorn with a message that reads:

“Popcorn is prepared in the same pot, in the same heat, in the same oil, and here the kernels do not pop at the same time. Don’t compare your child to other children. Their turn to pop is coming.”

Comparison is a thief of joy. As a parent, it is hard not to make comparisons. As a special needs parent, that pressure is even stronger.

I remember when we received T’s prognosis in 2016, I felt anxiety over things that I chuckle at now; like Googling what percentile his height and weight were at compared to the average child.

One big thing I worried about was T’s delayed speech at age 2.

We practiced daily with this 100 First Words board book and I was thrilled when he first correctly pointed to all 9 words on the page – a sign his receptive language was improving.

Here we are, six years later, and he is speaking just fine, albeit using colourful language I’d rather he not use!

In hindsight, I wouldn’t change how hard we worked with T. What I would’ve done differently is to ease off the pressure.

As I often write, I believe the journey is more rewarding than the destination.

When one is so focused on the destination and on others on the road, one forgets to live in their own moment and to enjoy the view and the company they are with.

I thought about the early days of working with T on his speech when I recently reflected about his journey to learn to read.

He is behind his peers, but he is making good steady progress.

The hubby and I still work hard with him, including on weekends, but we try to focus on fun now and not put so much pressure on ourselves to have T move up a reading level.

T can sense our anxieties and that, in turn, surely adds pressure on him, which can only deter his enjoyment and enthusiasm for reading.

With less pressure, a focus on fun, and genuine and generous amount of praise, we’re seeing a gradual change in T.

This month, I noticed that when we read to T at bedtime, with no expectations of him to read, he will ask to try reading some sentences.

His face lights up when he reads it correctly. He is not as discouraged when I gently correct a word he’s misread.

I also started to incorporate some of the language building techniques I’ve seen his teacher use during virtual schooling.

I pick two to three words from the book we read and ask T to brainstorm other words with similar start or end sounds – such as dr, cl, pl, sh, str.

I was warmly surprised at how many words T came up with on his own or how he sounded out the word after I gave him a letter to match up with an end sound (e.g. b+orn = born).

I wrote out all the words T created to show him how awesome of a job he did.

We cheer T on after each reading practice, because on days when his ADHD is super challenging, just getting him to sit and finish the work is quite the feat!

When we celebrate his good work and focus less on the challenges, it’s a joy to see how great he feels and the difference in his mood.

So yes, T may have been “stuck” at his current reading level for the last two months, but I’m focusing on his gains and less on the pressure of him moving up one level per month. He will get where he needs to at his own time.

When the focus is on the moment and not on an artificial rat race with others, you open yourself up to fun moments.

When we were reading “Clay Play” below, T said quite crankily, “What the hell! Why is she making so many things with clay?” In other words, he wanted it to end, so he could have free time!

And he did finish the book and did a great job with the word sound brainstorm. So as I promised him, we went to play in the snow.

He found a giant mound of snow in a parking lot and enjoyed climbing up and sliding down.

When we went back home an hour later, T asked to watch a movie with popcorn.

The hubby reminded T that he could make his own popcorn.

I watched him place the bag in the microwave, enter the time and press start – something I never would’ve felt comfortable with a year ago.

As the kernels started to pop, I gave him a high five for his awesome morning and told him to enjoy his movie.

“You’re Frozen When Your Heart’s Not Open”

When faced with fear and worry of the unknown, the natural response is to numb and protect your heart from potential pain.

I remember the early days of reading up about FASD and randomly bursting into tears while watching a toddler T sit or play.

It felt overwhelming, stressful and lonely.

But the heart has muscles. Every emotional weight helps train it to get stronger over time.

“You only see what your eyes want to see.

How can life be what you want it to be?

You’re frozen, when your heart’s not open.”

Last week, T discovered Madonna’s song “Frozen,” thanks to the remix version that’s popular on Tik Tok.

I then introduced T to the original version from 1998 and I was delighted he liked it too.

I chuckle thinking back to my early 20s when I went to get henna tattoos on my hand to copy M’s hands in the music video.

The elderly henna artist told me it’s for women only, but I didn’t care and still did it.

Fast forward to 2022, I chuckle at T’s reactions to the lyrics, “If I could melt your heart…” He insisted that “if your heart melted, you’d die!”

Although T is technically correct, he will one day learn about metaphors and lyrical language.

“If I could melt your heart,

We’d never be apart.”

Special needs parenting is an emotional marathon without a defined finish line.

You experience the full spectrum of emotions: deep unconditional love, fulfilling joy and fun, rewarding successes and soaring highs.

And on the flip side, negative emotions such as fear, worry, insecurity, doubt, frustration…

A crushing grief that visits you like unscheduled waves of the ocean…

An avalanche of guilt of how you could be doing more or how you could’ve reacted differently.

In my young parenting journey, I’ve learned to leave myself open to all of it – the good and bad, the beautiful and ugly, the light and dark.

They are a mirror reflection of each other; one informs the other. Each half makes the other real and alive. Both halves make me a whole parent to T.

“Love is a bird, she needs to fly.

Let all the hurt inside of you die.”

So the million dollar question is: How do I, in turn, help T build emotional resiliency?

I’ve got a $5 bill and a lotto ticket in my wallet – so that’s how far I’m at with figuring this out.

One of the best advice I got from a colleague is to validate our children’s feelings.

We may not fully understand what they are feeling, but it is real to them.

The hubby and I do our best to give T the space to feel the fullness of his emotions – he’s a kid who gives the fullness of his emotions! – and to try to give him the tools and vocabulary to process his emotions in a productive way.

Mind you, we don’t always get it right. Often times, our frustrations get the best of us.

But we know the emotional journey ahead for T will be a bumpy one and that’s why it’s important to help him be best prepared for it.

“You waste your time with hate and regret.

You’re broken, when your heart’s not open.”

Last week provided the three of us with a wonderful reset.

After two unexpected snow days, T finally went back to school and daycare.

He had three great days and this was followed by an uneventful and relaxing weekend.

We remain hopeful we can continue this positive momentum. The most important part is T feels good and this will be the fuel to keep us going.

Yesterday afternoon, we asked T to sit down to finish his extra math assignment.

I prepared myself for the exercise – counting 10 more or less, 100 more or less – to be challenging, as T had a hard time earlier in the week and we had to stop as he got very frustrated.

But I didn’t want the fear of another meltdown scare us from trying again.

And so we tried using a different way to explain the math concept to T.

And he got it! He completed the activity and proudly brought it to show the hubby.

This moment reminded me why it’s important to always try, because when things click, it’s so great to see T feel good about himself.

The frustrations make the successes all the more real and rewarding.

Afterwards, we went to play in the snow.

It was our second time out that day and T enjoyed sledding and stomping in the deep snow.

It was late afternoon and we basked in the golden hour light.

It was freezing cold, -15 degrees Celsius, but watching T play, smile and laugh made me feel warm and happy.

Labels Don’t Define Us

I was recently reminded about how we are taught and conditioned to label things from an early age.

Watching T complete his recent graphing assignments for virtual learning made me think about how we teach kids early on about sorting things into categories and labels.

To be clear, sorting and labels have a purpose and help us make sense of the world. The school activity was also innocent – sorting by shapes, colours and by like objects.

Labels, in the context that my mind went on a tangent on, can be limiting and damaging.

For starters, I often think about the label of a diagnosis, such as FASD, and the stigma that can shape T’s life.

In the early days, the hubby and I never shared T’s prognosis for fear of negative reactions.

Now, we are open about it because we know it helps open up doors to accommodations, such as a school IEP, and support services, such as a dedicated CYW in the classroom.

But I am mindful that a label can conjure up negative stereotypes.

I read with frustration about a recent SNL skit that poked fun of individuals with FASD.

It made me angry, because SNL used their huge platform to further marginalize individuals with an invisible disability that is already little known and understood.

It reinforced to me that labels are not the problem. It is the awareness raising – or the lack of – that is the problem.

It reminded about how behaviours can often be quickly labeled as good or bad. But in the world of neurodiverse children, we need other considerations such as disregulated, overwhelmed, or needs accommodations.

It’s not so black and white – speaking of even more labels!

Last week, on an unrelated note, T asked the hubby to do a different hair style. He wanted his hair shaved on the sides and back and to grow the top out.

He recently watched the movie, Tangled, and was smitten with the female character Rapunzel.

My initial reaction in my head was no. But I stopped myself from reacting and supported his request.

It reminded me of two other moments in the past year: when T asked for pink crocs and the hubby suggested a different colour and when he asked for an Anna doll from Frozen for Christmas.

It’s very funny how those moments make us pause, whereas when T asked for a Nerf gun this Christmas, we went with the flow.

It reminds me how even the hubby and I, whom I consider open minded, are also conditioned to label things; in this case, traditional associations between masculine or feminine.

T did get his Anna doll – the crocs were not available – and it got equally rough-housed as with his other stuffies, trucks and toys. He is non discriminating that way!

It really is so silly to even have to pause at these moments. They remind me that I, too, have a lot of conscious unlearning to do.

Thinking back to T’s prognosis, at the end of the day, I want a clear diagnosis for him – whatever it may be – so we can help him move forward in a clearer path.

As T and life reminds us everyday, a prognosis or diagnosis does not define us.

Labels should not define us either in such rigid and black and white ways. Life is richer and livelier in pinks and technicolor.

With love, support and accommodations, T will undoubtedly define his own path in life.