“Never Let the Fire Inside You Leave.”

Fire has long served as a symbol of creation, destruction and rebirth.

T’s latest song obsession is “Iconic,” from Madonna’s 2015 album “Rebel Heart.”

Every August 16, M’s birthday, we listen to her songs. This triphop autotune-laced song appeals to T, because he thinks a robot is singing.

If you try and fail, get up again.

Destiny will choose you in the end.

If you don’t make the choice,

And you don’t use your voice,

Someone else will speak for you instead.

What you want is just within your reach.

But you gotta practice what you preach.

You pay with sweat and tears,

And overcome your fears,

Never let the fire inside you leave.”

– “Iconic“

This song resonates with me, because I’ve long admired and been inspired by M’s work ethic.

Forty years into her career and past her commercial peak, she still pushes herself, against misogynistic comments about her age, experimenting with new sounds and touring techniques, instead of resting on her laurels.

What lights your flame and keeps it burning?

I think back to my 20s. I felt that my inner fire was like a set of fireworks. Huge shortlived bursts of energy, reaching for the skies, then flaming out until the next explosion.

At 21, I took a 10-hour overnight bus to New York City, from Canada, and walked into the office of a literary agency, without an appointment, and asked to speak to an agent so I could drop off my manuscript with them.

Nothing happened with it, because it was frankly not very good. I sometimes think and cringe to myself, who was that bold little kid?!

Sightseeing by myself on the 86th floor of Empire State Building in Summer 2002, with an entirely different perspective about life. Things are more grounded these days!

I turned 40 this year. I feel like my inner flame is now more like a tall thick candle – more reserved, silent, but nonetheless lighting a way forward for those around me.

The best thing about getting older – note that I did not say about being old! – is you know yourself better.

I know who I am and who I’m not. I’m happy and thankful for who I’ve become and the list of things that motivate me to keep trying to do better everyday is more focused and narrow.

As a parent, my inner flame also burns so that I can help ignite the spark within my child’s spirit.

The reality of special needs parenting is that it is mentally, physically, emotionally and spiritually draining.

This is not a complaint, because being T’s Papa is the most rewarding role in my life. This is just me telling it like it is; it is very damn challenging.

While I have many things in my life that take up my time and energy, T is at the nucleus.

My flame flickers, so that I can help him find his way in his life and shine in his beautiful own way. I hope that my flame can light the spark and give him the skills and resiliency to burn brightly despite the obstacles he may face.

“I can’t. Icon. Two letter apart.

One step away from being lost in the dark.

Just shine your light like a beautiful star.

Show the world who you are.”

– “Iconic”

In the early days of parenting, the hubby and I often had conversations – and I’ve always reflected to myself – that although T is now the centre of our lives, I do not want to lose myself in the process of being a parent.

I still have my own goals and dreams, even though most of them are now deeply integrated with my hopes and dreams for T.

While I reprioritized my own goals around T, I was always mindful to not lose sight of myself.

To be able to light a way forward for T, I have to keep my own flame burning.

This is why the pandemic was so brutally hard.

Like other special needs families around the world, we were on survival mode. There was no time or energy for anything else.

Not a flame, but just a dimly flickering light bulb in a persistent brownout state.

“Tell me I’m no good and I’ll be great.

Say I have to fight and I can’t wait.”

– “Iconic”

But fire is about rebirth.

This summer has been a blessing for our family.

With daycares reopened to offer daily reprieve from T to our summer roadtrip, I do feel rejuvenated and reenergized.

I previously wrote about the importance of nurturing mental well-being. Another important aspect of my self care, one of my most important personal goals, is physical well-being.

One big blessing is the reopening of gyms.

With careful attention to safety precautions, I go two evenings and Sundays every week.

Thirty minutes of cardio on the elliptical followed by weights – plus three additional evenings of swim time with T – I am finally getting the physical activity I’ve missed so much.

I’ve also focused more attention into my diet, something that went out the window during the early days of the pandemic.

Smaller portions, cut out pop and juice, and stopped eating snacks in the evenings.

I started herbal alternatives to my daily second cup of coffee, alternating between bittermelon green tea and turmeric ginger “golden milk,” the latter (pictured below) of which is soothing and gives me a great night of sleep!

This past Thursday was our final evening visit to the outdoor pool for this summer, because it closes this Labour Day weekend.

It was a cool evening, you could feel autumn in the air, so T wanted to leave after just 15 minutes in the pool.

During the drive home, I remarked how quickly the summer flew by.

During a red traffic light stop, I glanced at our little boy, from the rear view mirror. He was still little, but not so little at the same time.

He is always in his element in the water, full of fiery confidence and joy.

I so wish for that flame to help him sparkle and shine in all other areas of his life.

I know and fully expect that the upcoming school year, entering grade one, is going to be a huge test for T and for us as his parents.

I’m filled with both hope and anxiety.

But all we can do is take it one day at a time.

The song “Iconic” was playing on repeat in the car and it arrived at the bridge (middle part) of the song and T sang along loudly with it.

“Born to be a superstar,

that’s exactly what you are.”

I thought to myself at that moment about how much I wish for him to internalize that message and to let it be a fuel that keeps his flame burning brightly.

How Counseling Helped Me Become a Better Parent

Special needs parenting can be a rollercoaster and wonderful people can help along the journey.

A crucial turning point came early on for me when I recognized and acknowledged that the stress I was experiencing with the challenges of parenting a child with a prognosis of FASD did not always match my capacity to tackle them.

A week ago, a key relationship in my parenting life came to a close. The wonderful psychologist whom I had been seeing for over three years was retiring and we had our final session together.

It all began five years ago when our family doctor made a referral to Surrey Place, a wonderful organization that supports individuals with developmental disabilities and their caregivers.

He made the referral after we shared that T was prenatally exposed to alcohol. At 18 months, the developmental pediatrician at Surrey Place gave T a prognosis, not diagnosis, of at-risk FASD.

It was devastating news to receive and it took me a while to process it. But thanks to this prognosis, we received a plethora of life-enhancing services: developmental therapy, speech therapy, occupational therapy and behaviour therapy.

Another significant service was family counseling.

The developmental therapist asked early on if I was interested in their free family counseling services. She cautioned there would be a one-year wait list.

My philosophy, which I’ve adopted early on, was to take advantage of all the services we were being provided, because I knew that T would age out of these services at 6 without a diagnosis.

A year flew by and I was matched with a PHD student completing a practicum. We met once every two weeks after my work.

After she completed her practicum and left six months later, the psychologist whom served as her supervisor decided to keep me as a client.

I will forever be grateful for this, because her support the last 3+ years has truly helped me become a better parent.

Our sessions were typically an hour. It was and wasn’t what I expected a relationship with a psychologist to be.

In one sense, yes, there was a lot of talking. I talked and surprised myself with how open I was.

On the other hand, there was none of that deep analysis of my childhood or subconscious – or me breaking down in tears – that I expected thanks to how counseling is portrayed in pop culture. Not that there is anything wrong with that, just so we’re clear!

I talked a lot. We met every 3-4 weeks – and virtually during the pandemic – and I always came prepared with a list of the things that had happened with T and/or that was on my mind.

Our early conversations were less candid. It was a relationship after all and like any relationship, trust and comfort must be built first. But thankfully, they were built very quickly.

With no offense intended to the practicum student, who has a bright future ahead of her, working with the seasoned psychologist was different, because she instinctively knew, through years of experience, when to listen and when to probe and even challenge me.

She was not just someone who listened and validated my concerns but she became a trusted coach.

When T got kicked out of the Montessori program, when the public school board cancelled the specialized kindergarten program he was in, whenever I had to meet with school board staff to advocate for resource supports for T, the psychologist and I strategized and she coached me with wonderful advice from her years of experience working with families like ours.

I also want to add that many of the sessions we had together were also spent celebrating the milestones and successes that T has had. Being able to take a step back and to reflect with an objective person was also helpful in recognizing the gifts that we are blessed with.

I am very thankful that in recent years, open and frank conversations about mental health are being had and that there is a concerted effort to reduce stigma surrounding mental well-being.

I truly believe in saying that it is ok to not be ok.

In my case, being a special needs parent has changed my life profoundly – in positively rewarding and crushingly challenging ways.

Reading the experience of other parents going through their own journey has been inspiring. One common thread I repeatedly see is the feeling of stress, exhaustion, helplessness, loneliness and being misunderstood.

I’ve felt all those emotions in varying degrees.

As someone whose family has benefitted immensely from the social services available in our community – and I acknowledge this privilege, as I know that many others are not as fortunate – I can testify that there is no shame or embarrassment in asking for help.

In fact, it is essential for your survival.

Special needs parenting is a long game and I know that every day is a few more meters that I run – or stumble and fumble – in this life-long marathon.

Taking care of myself mentally, emotionally and physically and spiritually are important in allowing me to be the best parent to T, which also happens to be just one of the many hats I wear in life, along with husband, son, friend, employee and so on.

I became a better parent because of the psychologist that I had the blessing to have been matched with.

At our last session, I made sure to spend time to thank her and to tell her how much her support has meant to me and how she has made my life, and in return, T’s life, better.

For the first time in the three years that we’ve been meeting, we both teared up and got emotional.

Can you spot my cameo in this wonderful video promoting the incredible services of Surrey Place? It was taken during one of my counseling sessions before the pandemic.

The Child That Never Grows Up

I recently started reading Peter Pan with T at bedtime, his very first chapter book.

It is a modified version of JM Barrie’s classic adventure, with large text and a large illustration page on every page – to help a new chapter book reader make their way more easily through it.

We read one chapter per night. T mostly pays attention. I enjoy spending five to 10 minutes reading while he rests his head on my shoulder.

We’ve finished six of the 16 chapters. Each chapter ends of a cliffhanger, which I love, as it builds anticipation for the next evening.

For those unaware of this classic story, Peter Pan is about a boy who never grows up and tells the adventure that ensues when Peter brings three children to his home, Neverland.

As a parent of a child with a prognosis of at-risk FASD, the last five years have been an emotional rollercoaster of experiencing and learning as much as we can about FASD and what the challenges that may await T in the future.

One common characteristic that individuals with FASD may have is dysmaturity, which is when one’s chronological age does not match their developmental stage.

It was five years ago this month when we had our first meeting Surrey Place, an amazing organization that has provided our family with incredible life-enhancing supports.

When we first received T’s prognosis, one of the things that haunted me was when they advised that we will start to see the gaps widen between T and his other peers as he gets older.

Every special needs parent goes through stages of grief and for me, those words were ones that I really struggled with for a long time.

Thankfully, I’ve come to terms with that potential future for T and have chosen to channel those fears to doing the best we can to support T and to advocate for and to provide T with the early intervention supports to give him the best headstart in life possible.

I can’t predict the future and I refuse to let my fears stop me from enjoying our wonderful little boy and his fleeting childhood.

So with regards to this issue of dysmaturity, we are at a wait and see holding pattern. In many ways, T is doing great and we’re working on the areas that need support. We don’t know what the future holds and we will support and love T no matter what.

I want to clarify that dysmaturity and “Peter Pan” syndrome are two different concepts altogether – but the latter made me think about the former.

In the case of Peter Pan, I think about how the summer has just flown by. Soon, T will be starting Grade 1. Where the hell has time flown?!

I think about how temporary childhood is and how he now has two grown up teeth, with three more growing in now.

I often think about how I want to hang onto his innocence and to never lose that.

Because Peter Pan, as problematic as aspects of the story are, has one thing right: We lose things as we let go of our childhood.

The biggest loss is one’s child-like wonder for the world, the sense of infinite possibilities, and the curiosity (and time and capacity) for adventure.

I love being a grown up – but there are so many aspects of it that I can tell my younger self, if I am able to, are overrated.

We can’t fight the tide of time, including with T, but we can cultivate a mentality of keeping our inner child alive within us.

That’s why it’s so important for us to take T on adventures in nature, to be silly, and as a special needs parent, to just let go about the worries from time to time.

T has only one childhood and we want it to be one that he can look back on fondly – and hope that happy memories get him through challenges he may encounter in adolescence and adulthood.

School starts in 2.5 weeks. I feel a mixture of excitement and hope intertwined with sadness and anxiety.

I’m doing my best to park those thoughts aside. There is still a lot we want to do and to enjoy before we say goodbye to summer.

Why Struggle is Good for Kids

“The struggle you’re in today is developing the strength you need for tomorrow.”

I reflected on this Robert Tew quote after a lifeguard at the public pool called us out after he noticed T struggling in the water.

The outdoor pool has been our savior the last two summers. We are there every other day to soak up as much summer as we can, while allowing T to burn off his excessive energy.

T is in his element in the water and the outdoors.

We park ourselves at the corner edge of the rope that separates the shallow and deep ends.

T likes to jump into deeper water. He enjoys sinking to the bottom and pushing himself back up. This year, he began to do front and back rolls.

T doesn’t know how to do proper swim techniques but he is very comfortable in the water. He can doggy paddle or float kick on his back from one end to the other.

Due to the pandemic, we have not enrolled him into lessons and our focus is building his confidence and comfort in the water, so he is ready for lessons when they resume.

One way we do this is to let T explore freely in the water. We stay close by but don’t micro manage every movement. T knows to, and does, ask for help when he needs – and one of us would immediately hold him up.

This week, there was a new lifeguard at the pool. He was stationed at our corner and he noticed T with his head titled up, as usual, as his arms and feet flailed, his way of treading water.

“I think you need to move to the shallow end,” he said.

I knew the lifeguard was well intentioned and was just doing his job.

I politely told him that he is doing fine and that we are keeping a watchful eye on him. The hubby added that we’ve been doing this the last two summers.

The lifeguard then added that T looked like he was struggling.

I explained to him that we would not let our child drown and this was our routine. It was my polite way of telling him to buzz off.

As we continued to swim, and later into the night, I thought about the lifeguard’s comments.

I understood and appreciated his concern, but I also balked at the idea that we shouldn’t allow kids to struggle.

“Struggle” is a trigger word for me, as I am sure it is for other special needs parents.

I often think, and have already experienced the last five years, about the ongoing struggles that T will have in his life – at school, in relationships, with future work and with self concept.

I don’t know what the future holds and every child is different, but struggle is a common thread for individuals with an invisible disability.

As a parent, the instinct is to hold them close and protect them from the negative emotions and moments associated with struggles.

But the hubby and I know that this is not helpful.

A little struggle, incrementally experienced, is good for everyone – special needs or not.

As this Big Life Journal article so nicely articulates, struggle is important and helps kids develop perseverance, problem solving skills and confidence – as well as build emotional regulation and a growth mindset.

I’m thankful that T mostly likes to try to do things on his own – like the monkey bars, completing a level on his Switch, or making his way around the water or through a difficult hike.

We always remind him that it’s ok to ask for help if he needs to and that we are close by. He has so far not been shy about asking for help.

As if he was trying to prove our point to the lifeguard, our encounter at the pool ended off on quite a hilariously empowering note.

Immediately after our conversation with the lifeguard, T floated on his stomach and started moving his arms in a circular motion and kicked his legs.

The movements were choppy and far from polished, but there was no doubt that he was trying to do the front crawl. He did this from one end of the pool to the other.

He had never done this before! The timing felt more than a coincidence, it was poetic.

The hubby and I gave each other a surprised and delighted look.

Not being able to resist adding his usual smart ass commentary, the hubby said out loud, so the lifeguard could hear, “Struggling, my ass.”

Childhood Summers and the Call of the Wild

We hiked along Nigadoo Falls and found an off-the-beaten-path swim spot with a gorgeous backdrop of jagged rocks, tall evergreens, a river current and cliff jumpers.

It was a wonderful and refreshing way to spend a Friday afternoon, sharing this cozy private freshwater bowl with a dozen locals.

With his lifejacket on, T explored the area, swimming like a tenacious fish against the current to the rocky base of the falls.

Once he got up on the rocks, the hubby pointed out the water eels slithering on the slippery rocks. T got grossed out and swam out, insisting he was never coming in again.

While T played on the rocks, the hubby and I swam for what must’ve been two hours.

T eventually came back in as we knew he would. The water is always comforting for him.

I felt so grateful this slice of heaven was pretty much all ours to enjoy in this moment of time.

Earlier this week, we explored southern Tetagouche in Bathurst. We hiked downhill towards a scenic riverside area with jagged rocks.

The walk in the sweltering sun was worth it as it took us to a tiny pebbled beach with the gorgeous Tetagouche Falls just steps away.

The water was so inviting that the hubby, T and I were in soon after we arrived.

The locals showing us the way.

The hubby and I joined two local boys in climbing up the rocky wall next to the falls and jumping off into the deep dark water below.

What a refreshing adrenaline rush!

The hubby jumps off the rocks!

T was too short to climb up the jagged rocks and we pledged to take him back when he’s tall enough to climb and jump.

Instead, he busied himself by exploring the shallow river side.

We purposely did not tell him there were leeches in the water – a fat one clung onto the hubby while two baby ones clung onto my toes – because T would’ve refused to go in the water.

I enjoyed standing and watching him explore with abandon. This is what childhood summers are all about, I thought to myself.

When I was younger, just a few years older than T is now, I loved reading a book series written by Peggy Parish, best known for the Amelia Bedelia books, featuring siblings Bill, Jed and Liza.

Every summer, the siblings would stay with their grandparents in the countryside. Inevitably, they found themselves embroiled in a mystery, often set up by their family, that they had to solve.

What appealed most to me about these books were the siblings spent hours, days and weeks out in nature – at a time when there was no Internet, no mobile phones – exploring nature freely and with abandon.

My childhood summers were far less eventful and one thing I often thought about as we began our adoption journey was how much I would love to nurture a love of the outdoors with T.

The hubby and I are very fortunate that T is in his element in the outdoors, enjoying long hikes and swims in the wild.

The vastness and calmness of nature provides a wonderful counterbalance to T’s endless energy.

Our vacation is flying by. We are grateful for the memories we are making with T this summer and thankful for the hospitality of the hubby’s parents. We head home in three days.

As with summer, as with life, every moment is fleeting. It’s a good reminder to live in the present and to enjoy every moment while we can.

Reunions with Grandparents!

After a year of separation, T reunited with his grandparents from both sides of the family.

Two weekends ago, we spent a Saturday with my uncle’s family, our Aunt and Ma – going on a nature walk and ending the day with a delicious bbq prepared by my aunt and cousin.

My aunt’s almond jello, one of my favourite desserts.

It was Ma’s first time seeing T since last November and her stroke near Christmas.

T was in an exceptionally good mood and his friendliness lifted Ma’s spirits. It was wonderful watching the two of them interact and T getting his favourite back rub from his Ama.

This past Saturday, we got up at 5 am to make our long-awaited visit to New Brunswick, a province in the East Coast of Canada.

Changes to restrictions allow us to visit, our first visit since 2018, and the first time we’re seeing the hubby’s parents since March 2020.

While I was sad our Northern Ontario roadtrip got cancelled, since we had a great time last summer, I’m happy we get to visit T’s Grammy and Grandad for our annual summer vacation instead.

We usually do the 16-hour drive over two days but we did it in one go, to avoid an overnight stay in Quebec.

T got up in a super excited mood on Saturday. We had packed the night before and we were out the door by 6:30.

T is a super trooper during long drives, an irony considering this kid can’t sit still at home or at school.

We took frequent breaks and had an unexpected lunch-time reunion at the Ontario-Quebec border with longtime friends, whom we go camping with every summer prior to the pandemic, who were also on their way to the East Coast.

I should’ve unwrapped the foil before I took this picture. There’s a yummy chicken leg under there!

An East Coast roadtrip is never complete without a stop at St Hubert, a rotisserie chicken chain in neighboring province, Quebec. It was delicious!

We arrived at my in-law’s home close to midnight local time – they are an hour ahead.

We were all delirious by that time but it was a wonderful reunion. T gave them both a big hug and it was heartwarming to see my hubby reunite with his parents after such a long time.

We slept like a log and woke up to a beautiful New Brunswick morning by the saltwater bay – and 10 days of summer vacation ahead of us.

Lost in an Odyssey

Mario Bros has provided great bonding moments with T and is teaching him about patience and perseverance.

During these virtual schooling and work from home days, it’s common for me to be on a work call and for T to walk into the office unannounced.

He’d walk past behind my chair, his little head seen on my video, to take the Nintendo Switch plugged next to my desk and then plop himself on the bed behind me and start to play while I continue to chair my meeting.

I love these moments. I find them cute and his presence mostly brings calm comfort.

Unless he loses a game or encounters a particularly challenging portion of the game, that is, and then he screams with frustration.

I’ll then have to explain with a laugh to my understanding colleagues what’s happening and to reassure them that a child is not being murdered in our home.

The Switch was a gift we got for T for Christmas and I’m sticking with that story – even though I’ve been playing it just as much, if not more, as him.

I’ve enjoyed gaming my entire life and have a particular fondness for the family friendly, cleverly-designed and super fun Mario games.

When we first adopted T, I always taught how fun it would be to share the things I loved growing up with him, including video games.

It turns out we have quite the gamer in development.

At just age 6, I am amazed at how quickly he is figuring out the games and the complex controls; remember when controllers only had two buttons and not like 2 million buttons?

He loves watching gamer videos on YouTube and is undoubtedly picking up lots of tips and tricks from them.

We are currently playing Super Mario Odyssey. What I love about this game is that there is a main story you have to complete but there are also hundreds of side challenges that you complete to earn Power Moons.

T loves exploring the vast digital worlds and searching for Power Moons. I am so impressed at how quickly he finds them.

I let him play along with the specific game that I started. With T’s capable help, the two of us have found close to 500 of the 999 possible moons in the game.

This represents two months of teamwork for us, finding one Power Moon at a time – see sample walkthrough video below.

I just love the proud look on his face every time he finds one. Sometimes, he’d barge into the office while I’m on a call to tell me he’s found one.

Sometimes, we play by ourselves. But the best times are when we’re sitting next to each other, shoulders touching, and watching the other play.

T is still not very good at sharing, so often times he hogs the game.

But what I love is when he gets stuck, he is learning more to ask me for help to push through a roadblock. I think that is a wonderful new skill he learned.

T still has hilarious meltdowns when he loses or encounters a hard moment. But I keep reminding him – as video games are so great at teaching – that failure is not final. Just try again until you get it right.

He still hates losing but I do see that he’s bouncing back from those moments faster and sometimes even with a laugh or a shrug.

We do try to be mindful of his screen time consumption, as he is getting way more screen time than ever – with virtual schooling and the hubby and I generally tied up with work.

So the Switch has also provided us with a great tool to offer to T as an incentive to sit through his five daily school lessons, to participate in class and to complete his work.

If he does what we ask, he gets the Switch at the end of school. If not, tough luck.

It’s been a good incentive to get him to practice his learning on weekends too. Our goal is to do 20-30 minutes each of reading, writing and math practice during the weekend.

We sandwich these learning practices after breakfast and before the Switch, while he’s still fresh and not crabby.

The Switch has provided a great incentive for T to do his work. His writing has come a long way!

This past weekend was the best one yet. He did a great job with his reading exercises, did nice writing (he’s come a long way since September) and he whizzed through the math exercise I created in record time.

So thank you Mario, Luigi, Toad and Princess for helping give us some much needed escape and family time found during these challenging pandemic days!

Math is a strong suit for T so far. He whizzed through two pages of these questions very quickly. Yes, he writes his 2s and 7s backwards.

Soaring to New Heights at Canada’s Wonderland

T visited his first amusement park last weekend and went on his first big kid rides!

Canada’s Wonderland is like the Canadian version of Six Flags amusement parks – with big rollercoasters, spinning rides and a Snoopy-themed kids area.

The hubby and I have gone many times as kids and together as adults. But this was the first time we’ve been with T – and it was something we’d always looked forward to experiencing with him.

Distancing and mask wearing requirements were in place. It was a sunny and sweltering day.

The domineering blue Leviathian roller coaster track greeted us at the main entrance.

“Can I go on that?” T asked excitedly.

“Oh no,” I said. “You need to be a lot taller.”

The staff measured T at 4 feet tall, which meant he could actually go on quite a bit of big rides.

We started with The Fly. At a first glance, it looked like an unexciting ride with a small drop.

But the quick horizontal swerves at the top make it feel like your car is going to fly off the track.

It didn’t phase T. We heard a lot of “Whees!” during his first big kid ride.

We then went on other rides, including the Vortex. I was pleasantly surprised T was allowed to go on it, because it was an intense coaster.

But T handled it like a champ. If anything, I got dizzy after; a sign I’m getting older!

T and I enjoyed the spinny Klockwerks while the hubby sat it out because he knew it would make him disoriented for the rest of the day.

As we stood in line for each ride, which averaged 30 minutes wait, I thought with amusement how one’s perspective changes as they get older.

When I was a child, these lineups felt endless. As an adult, I enjoyed standing in line, staring vacantly into space without being pulled in a million directions. Time just flew by!

We introduced T to the Wonderland tradition of ending our visit by sharing a plate of delicious funnel cake – fried dough topped with powdered sugar, strawberry sauce and ice cream.

It was finger licking good for T!

On our walk out, we asked T to rate his day from 1 to 10 and he quickly shouted, “100!”

For us, it was a great day too. I did not know how T would react. It was noisy, busy, hot. I mentally prepared for him to have a tantrum at some point, but he was a trooper!

We’ll be back again one day and perhaps try the intense grown up rides, like Yukon Striker.

I told T, a fussy eater, that if he wants to go on the big rides, he needs to get taller; to do that, he needs to eat meat and protein-rich foods.

I’ll let you know if he falls for it!

Explaining Evil to Young Kids

During our recent roadtrip, T came across dozens of shoes left behind on a set of stairs.

The stairs belonged to the Town Hall of Gananoque, where we spent a nice weekend exploring the Thousand Islands.

Across Canada, citizens gathered and left shoes behind at government sites in recognition of the discovery of several hundred remains of children at the site of a former residential school.

Naturally, our curious T asked the hubby why the shoes were there.

I was curious to see how the hubby would explain a dark topic such as evil to a young child.

For me, young kids see the world in black and white and have an innocent view of the world – an innocence I want to hang onto for as long as I can, because I know it will be gone one day.

I’ve read that kids with FASD, of which T has an at risk prognosis, have a harder time with abstract concepts.

In T’s world, the concept of a hero and villain is straightforward. If you’re a Paw Patrol or Mario, you’re good. If you’re the red wall from Roblox or Hawkmoth from Miraculous, you’re a bad guy and evil. Zombies and vampires? Definitely bad.

But how do you explain to a young child the concept of the government and the Church, traditionally seen by children as forces of good, forcibly taking Indigenous children away from their families to assimilate to Canadian society – and that these children lived in poor conditions, many were abused and died, and those who survived now live with lifelong trauma?

The hubby kept his explanation high level. He explained the shoes were left to remember kids who were taken away from their families to attend a school and that these kids got very sick in the places they lived in and many of them died.

Our zombie-obsessed T then asked if the kids are now zombies.

I’m sharing T’s response not as a sign of disrespect but to convey just how innocent a child like T is and how a difficult conversation, such as the evils that society and individuals do to others, needs to be framed in an age appropriate way.

A few steps from the Town Hall was a beautiful memorial to remember the towns people who heroically fought and died in war.

The hubby kept the explanation simple again, explaining that the names on the statue were of people who had died while fighting for the country.

I didn’t think the concept of a war was something we wanted to get into too much detail too at this time either for T.

For a young child, the world is a place of wonder and amazement. While I want to hang onto T’s innocence as long as possible, I’m also aware and not naive enough to think that kids can’t handle difficult and dark topics, such as evil.

I am glad that topics such as residential schools are now being taught in schools, because I don’t remember learning about them in grade school.

I think education is one important step is helping history not repeat itself.

Another important step is doing our part to speak up.

Last Monday, T and I were playing as usual in the playground after I picked him up from daycare.

There were four boys in the park with us and I estimated them to be about 12-13 years old.

One of them encouraged the group to head towards T’s daycare entrance, where a pile of toys had been left outside.

Each boy grabbed toys in both hands and started running away from the daycare.

They came back to the playground and started laughing and chuckling. “We got new toys!” They said and were about to head home with them.

I was about to stay silent because part of me thought that they were just kids being kids. But I spoke up as they walked away from the park.

“You know that’s stealing right?” I said.

The boys stopped and looked at me.

“You need to go back and return those toys right now,” I said.

The boys just laughed at me, the old curmudgeonly man with my cane, and then threw four hullahoops and two balls to the ground.

“We’re keeping this soccer ball,” one of them said defiantly and the group ran away from me.

I picked up the toys and walked them to the daycare and called the daycare staff to explain what happened and they were appreciative and put the toys inside the building.

To be clear, I am not equating the pesky mischief of these four boys with the horrors of residential schools or war.

To me, it was important for T to see grownups role model the act of speaking up when someone is doing something wrong.

At dinner time, T and I spoke about the playground incident with the hubby and T said those boys were being bad.

For a young 6-year-old, that is a good enough step in what will be a lifelong journey of learning about the nuances of good, evil and everything in between – and doing our part to educate about and stand up for what is right.

Exploring the 1000 Islands

If a photo is worth a thousand words, a great friendship is worth a thousand memories.

The hubby, T and I went on a weekend roadtrip with a good friend, one whom I’ve known for over 25 years, since I was 14.

We went to explore the Thousand Islands in Gananoque, a three-hour drive from home.

On Friday, T woke up super excited. He had been counting down the days all week. He announced as he walked into the kitchen, “It’s the moment we’ve been waiting for!”

After breakfast, a motivated T soldiered through reading and math activities and we then headed off on our merry way.

We met up with “Auntie E,” as T calls her, at Landon Bay and set off on a two-hour hike.

The trail took us to a beautiful lookout…

… and through lots of forest…

… and more forest…

… and rustic bridges…

… and an old wrecked car that must’ve been in that forest for decades!

As usual, T was a super trooper!

Although this year, he’s been very creeped out and laser focused on bugs.

He keeps thinking everything is a bee or an earwig that will attack him.

We repeatedly reminded him that he is bigger than the bugs and so long as he doesn’t bother them, they won’t bother him.

Despite his nervous behaviour, he kept up with the grown ups and made it to the finish line!

We drove to nearby town, Kingston, to reward ourselves with dinner at Boston Pizza.

It was our first time eating indoors at a restaurant in 16 months, on the first day our province allowed indoor dining to resume.

We were all starving. I enjoyed a delicious steak and T inhaled a plate of spaghetti.

We got up very early on Saturday morning and enjoyed a three-hour kayaking tour, led by 1000 Islands Kayaking.

When we arrived on site, I kept thinking to myself, “Please don’t let me be paired up with T, please don’t let me be paired up with T…”

… And I was paired up with T!

I’m not an experienced kayaker, so I was very nervous having to fend for both of us – because as I predicted, I did all of the paddling!

But we had a blast – and I kept up with the group – despite T complaining of being cold. He enjoyed the scenery and asked good questions to the guide when we stopped at a 90-year old shipwreck.

It ended up being an intimate and enjoyable morning.

Our group totaled 9 people, including the guide. The water was calm, the overcast and cooler weather was perfect for the activity.

And the scenery was so beautiful. Tree lines and rocks as far as we could see – even spotted the USA in the near distance.

We spotted numerous blue herons along the way. I’ve never seen one in person before and they are so majestic when they take flight!

There are actually 1,264 islands in total on the Thousand Islands. The hubby, E and I gawked at and admired the million dollar homes and cottages on the shoreline and private islands.

In all, we kayaked nearly 7 km and 3 hours. T was, as always, a trooper.

The rest of our day was super relaxed, including taking an afternoon nap, exploring the local town, and having dinner on a lovely patio overlooking the water.

We slept in on Sunday and after brunch together in Kingston at a 70s style dinner, we headed our separate ways to home.

T had the Mickey Mouse pancake for brunch.

Not only was this a fun weekend, it was also the first roadtrip we had with E since 2018, our third in total with her that included T.

It felt so nice to do something adventurous with a good friend after being isolated for so long.

It was like no time had passed.

I’m very thankful to have great and lasting friendships – and amazing friends that have embraced T into our ongoing traditions, which have also included camping trips.

The world is opening up again and we’re looking forward to creating more positive memories for T, and catching up with family and friends, this summer!

The New Boy in the Park

A wonderful shortlived friendship T made was a reminder about kindness and being present.

I often think about friendships, because I’ve read it’s often a challenge for individuals with an invisible disability, such as FASD.

It was one of the hardest parts of the pandemic, knowing T was isolated at home and missing out on valuable interaction with kids his age.

About 6 weeks ago, we began our nightly routine to hang out in the playground after dinner.

It was when we met the boy, let’s call him T2, and his grandmother.

Immediately, T and T2 hit it off.

They were the same age. Both the only child. T was taller but T2 was faster and gave T a run for his money playing chase and race.

While they played, I chatted with his grandma, who was taking care of him during the week, because his parents were working; T2 lived over an hour outside the city.

She sounded like she enjoyed virtual schooling as much as I did!

The grandma and I worked together to ensure we all left the park at 7:45. When one kid had to leave, the other would follow too. No whining.

Every night, after dinner, T would be motivated to leave the house so he could play with T2.

When we got to the park, the grandma was usually sitting on the bench, while T2 was playing. When he spotted T coming, he would run quickly towards him.

It was around this time that T got motivated to give monkey bars a real try. Looking back, I think T2 may have influenced him.

As T made his way across, the grandma and T2 would cheer him on. We all cheered him.

T2 was good at learning to swing by himself, using the proper kicking motion. So he and the grandma were trying to teach T how to do it too.

About two weeks into getting to know each other, T had his massive meltdown at the playground.

But as I wrote in my previous post, this did not stop the grandma from letting T2 play with T nor did it deter T2 from wanting to play with T.

That was one of those moments that made my heart swell from the kindness of others and from the acceptance children possess in their hearts.

About a week or so later, there was a dad in the park flying a kite with his two children, who were a few years older than our two Ts.

T and T2 saw the kite in the air and immediately stopped what they were doing in the playground and charged into the field to chase after the kite.

They were both so excited that they bumped right into each other and fell to the ground. They quickly got up and ran again. I could’ve just died from how adorable the moment was.

The next evening, as we were walking home together – they lived on a nearby street across the street from ours – T2 did not stop on the street to wait for his grandma to cross as usual.

Instead, him and T ran together down our street towards our home.

Apparently, as T told me later, he invited T2 to come into our home but T2 rightfully said no. I told his grandma the next day what a big deal this was for T to make this gesture.

As the school year neared its end, I felt excited on one hand that the hell of virtual schooling was going to be a memory soon – but on the other hand, I felt sad knowing T’s time with T2 was coming to a close.

I am a pragmatic person and know it’s not realistic to expect these two to keep in touch with a big geographic distance between us – and also knowing T2 and T’s respective summer plans.

But I didn’t let that sad feeling get to me. Instead, I chose to enjoy the moments T and T2 had left.

During one of the last evenings, T waited for T2 at the top of the slide and they both then went down together, T2’s legs wrapped straddled around T’s waist from behind. They laughed loudly as they slid down together.

They did this a few times before we told them it was 7:45 and time to head home for bed.

I asked the grandma if I could take a photo of them going down the slide and she kindly agreed.

I’m not sharing the photo, but I’m thankful I have captured this wonderful moment in time to share with T.

I am optimistic there will be more T2s in T’s future. Sure, his challenges can get in his way at times during social situations, but I have faith in him… and in the goodness of others.

For now, day camps are open again and it is wonderful that T is with his peers again – building new memories, learning social skills, and getting to be a kid amongst kids again!

Patience, Perseverance, Payoff

Whoever coined the phrase “patience is a virtue,” must’ve parented a child with ADHD.

We’re keeping learning going this summer on weekends. We keep it chill – a bit of language, math, writing practice, and physical activity.

Once T gets his checkmarks, he gets free time and other rewards the rest of the day.

Among our learning tools, we’re completing the Complete Canadian Curriculum: Grade 1 workbook, which covers math, language, science and social studies.

So let’s talk about worksheets – and completing them with a child diagnosed with ADHD.

Let’s take this example of a worksheet about ordering numbers from least to greatest – left page above.

I thought this would be a breeze, because T is good with numbers – and has done similar activities in class this year.

We start with question 1. “So T, what’s a smallest number in 5, 13 and 9?”

T’s immediate reaction is to start pointing to other questions on the page.

I ask him to focus on this question.

“What’s the smallest number?”

“5.”

“Ok, great T. What’s the next number in order?”

He then points to the cat on the bottom right of the page and asks what the cat is doing.

“What’s the next smallest number?”

“This one?” T asks, pointing to another set of numbers in another question.

“No, 5, 13 and 6. 5 is the smallest. Which number is the next smallest number?”

“I want to get Moo Moo and Ladybug,” he says, getting up to get his stuffed animals.

He comes back and sits downs. I remind him what the question is.

I take a deep breath. Sensing my impatience, T brings his stuffed cow to my face. “Moo Moo wants to kiss you.”

“What’s the number?” I remind T of the task.

“I love you, Papa,” he says, reaching out to give me a hug.

I laugh out loud, as I hug and kiss him. “You are so frustrating sometimes. Just answer the question!”

“9.”

“That’s great! And that means the largest number is…”

“13,” he says.

We make slow progress on the remaining questions, with several more tangents.

I’ll be able to collect my old age pension by the time we finish this worksheet, I thought.

T actually asks me at one point, “Is it going to be Christmas soon?”

Without skipping a beat, I replied, “It will be, at the rate we’re moving!”

This may seem comical – and to be honest, it was kinda funny – but these moments reinforce to me the challenges T will have as he enters a more structured environment in Grade 1.

The good news is I do think he understands these concepts, but getting him to focus his very busy mind is a work in progress.

It’s hard to tell on some days whether the ADHD medication we started him on last summer is making a difference. The hubby disagrees but I do notice a big difference when he’s not on it.

But we persevere in a few ways:

We try to remind him what he’s working for. Providing T with the incentives of earning checkmarks and a reward, such as time on the Nintendo Switch, makes a difference.

We try to break the task into smaller chunks. We try to remind him to focus on one question at a time. I can see why a busy two-page worksheet spread can set him off on a hundred tangents.

We play along with his quirks. If he wants Moo Moo and Ladybug to learn with him, so be it. His stuffed animals are on their way to PHDs!

We try to have a sense of humour. It is so laugh out loud frustrating sometimes when he’s so distracted, but we know he is not doing it on purpose. So we try to focus on the bigger picture: his incremental learning and growth.

Lastly, we go over the top with celebrating his completion, because he does get to the finish line and that’s the most important thing.

The payoffs motivate T. We see his proud look, his sense of accomplishment, and we see him understanding the connection between doing the work and the reward.

I hope his momentum keeps up, because it feels promising.

This past Saturday, T’s reward was a trip to the mall. We picked up glasses the hubby ordered and we went to look at glasses for T and I.

It was our first time at the mall in a year, not counting the times we went to get vaccinated.

Things are slowly opening up in our province. It almost felt normal until we saw the lineups outside each store, the limited store capacity and all the signage on the floors…

And the benches.

T smelled the sweet aroma of popcorn from Kernels and asked for a bag.

We told him that since he did a great job completing his learning work that morning, he could get a small bag of his flavour of choice.

The hubby and I rewarded ourselves bubble tea, the first time in I don’t even remember how long since we’ve ordered bubble tea from a store!

After we got home, we quickly changed into swim clothes for a late afternoon swim at the pool – a great way to burn off our sweet drinks.

Seeing T repeatedly jump into the water, with a huge smile and loud laughter, was my payoff for persevering through our day together.

Candid Conversation: Raising Jess and Finding Hope

It’s inspiring and comforting to connect with other parents on the special needs journey.

Vickie Rubin is the author of Vickie’s Views, a heartwarming and inspiring blog about raising her daughter Jess. Vickie has a background in early childhood education and special education. This month, she releases her memoir Raising Jess: A Story of Hope.

When Vickie reached out about writing a guest post on my blog, I asked her to take part in my first “Candid Conversation” post – to have a parent to parent chat – and she kindly agreed!

Thank you for reaching out, Vickie. Please tell us about your daughter, Jess.

Photo Courtesy: Vickie Rubin

How to describe Jessica succinctly, hmm. Jess is 39 and was diagnosed with a chromosome deletion 1Q-44 when she was 21. Before that and the development of more sophisticated tests, she had what we called “Jessica Syndrome.”

Jess loves her family, friends, and music. She is usually the bright light in the room. Her smile is pure joy, as is her greeting of screams when she sees a familiar face. Jess lets you know without any words that you are loved and appreciated. She has taught me way more than I have taught her.

Congrats on your memoir! What inspired you to write this book?

Photo Courtesy: Vickie Rubin

Ever since I can remember, my Mom said, “You should write a book.” My response was repeatedly, “I am raising three kids, one who requires total assistance with everything.” The answer eventually included, “How can I write a book; I am working full time?” Usually said with only the annoyance a daughter can muster! And yet, she persisted.

I published many essays in newspapers and magazines, and each time I shared them with Mom, she would say, “you should write a book,” as if it was the first time suggesting it! How annoying!

I retired in December 2016, and my kids bought me an old school dictionary, thesaurus, and journal and said start writing.

Newly unemployed and with time on my hands, I decided to do it! Every day for three years, I wrote. The result was the book “Raising Jess: A Story of Hope,” due out July 2021.

Writer David Wade once said in the London Times that “experience needs distance and what you write of at a distance tells not so much of what you were like as what you have discovered since.”

Unfortunately, as I was writing my book, my mother was diagnosed with Alzheimer’s. After all the years, I finally did what she asked! And I loved every minute of it. Regretfully, it was too late to talk in-depth with Mom about the chapters and process.

I’m very sorry about your mom, but I am glad that you got to fulfill her wish.

I’m on an earlier part of the special needs journey and as you know, “special needs” is such a broad and complex spectrum. One common thread I’ve observed about parents on this journey is the concept of loss and grief.

What is your advice for parents who may be experiencing loss and grief?

Photo Courtesy: Vickie Rubin

My career focused on working with young families of children with “special needs.” I know the essay Welcome to Holland can be considered corny, but it also resonated with me. 

I think families need to acknowledge that the child they dreamed of is different than their expectations. But different doesn’t mean bad. It’s ok to feel loss and grief. But, then you embrace your child, who is different from anyone you imagined, and build a new dream together.

Many families make the mistake of isolating themselves from friends, especially those with similar age children, and family. From the beginning, we remained close with our friends and found a wealth of support and love. I often hear now that Jessica’s same-age peers are amazing advocates because “when they were growing up, they knew a girl…”

My Mom always felt bad for me and was unable to overcome her grief, so that she could genuinely enjoy Jess. Parents may find that their parents are grieving for their grandchild as well as their child.

Support groups – the right ones and not the bitchy-complaining ones – were beneficial for us.

What a great attitude, Vickie! I loved the “Welcome to Holland” essay. Thank you for sharing!

On the flip side, I love that parents such as yourself are using platforms such as blogs and social media to celebrate, advocate and showcase successes. What have been your most proudest moments in your journey with Jess?

Photo Courtesy: Vickie Rubin

For my book, I asked my kids and family that question, and everyone came up with the same reply, Jessica’s Bat Mitzvah. 

This is a clip from my husband Mitch’s speech to Jessica: “This day is so meaningful to our family, an evening where Jessica is celebrated and honored for being a Bat Mitzvah as any other Jewish girl of thirteen. We have come a long way as a family and a community to have total acceptance. It’s not easy; it is many times a great effort, but the outcome of inclusion, acceptance, honor, and love is worth the effort.”

Watching how Jessica’s siblings embraced Jessica and did not feel slighted because of all the care Jessica needed. They believed they could do everything they wanted as a child; it just took longer to get there!

Walking Jessica across the stage for her high school graduation and Jessica winning the Principal Award: The principal for her school invited Jess and our family to a gathering of all graduating students who were winning awards. 

The last award was for Jess and the principal said, “This student overcomes hardships every day of her life.” He spoke of the student’s courage and enthusiasm for school. He went on to say that although this student has many challenges every single day, she still comes to school with joy and a smile and brings that joy to all those around her. “This award goes to Jessica Rubin!”

Thank you for sharing that. I know other parents and youth reading this will feel inspired!

I’m fascinated by the writing process, especially when it’s so personal. How did you decide which moments to highlight in your book?

Photo Courtesy: Vickie Rubin

I think this is one of the reasons it took me so long to start the book. I kept imagining a textbook – which overwhelmed me to no end.

I also imagined a book that started on Day One, we did this etc. But then I read the memoir The Diving Bell and The Butterfly, written in essays, and I knew I found my writing style. I had already been writing essays to our local newspapers, similar to my blogs, which is my writing style. 

The Book Raising Jess: A Story of Hope is written in essay form and covers highlights of our life. It talks about the challenges of caring for our daughter with disabilities to marriage struggles and the question of having more children. The book gives a glimpse into the world of our family and transformation while Raising Jess.

That’s an interesting and pragmatic approach! And your blog is certainly a collection of even more essays.

You recently wrote a touching post about turning lemons into lemonades during the pandemic. As a parent, I feel that adaptability is a quality required to get through the challenges. Where do you draw your inspiration from to turn your lemons into lemonade?

Photo Courtesy: Vickie Rubin

Jess inspires me. She has so many reasons and barriers that would prevent her from experiencing joy in life, yet she appreciates delight more than most. I also think letting go of comparing to peers; it’s so tempting yet so damaging.

Follow your journey. It’s ok. We are all different, and we can all learn from each other.

I had a call the other day from a peer of my youngest daughter. His friend has a baby that will most likely have significant disabilities. He asked me to speak with the parents and told me all he learned from watching Jess grow up. Jessica’s legacy is so far-reaching; she has touched so many people in positive ways. I find that truly inspiring.

Thank you, Vickie, for sharing your story. I’m glad that we met through the blogging community. I’m so moved by your and Jess’ story and look forward to picking up your book. Best wishes with your launch this summer!

About “Candid Conversations”

If you’re interested in taking part in a “Candid Conversation,” my blog’s version of a guest post, please reach out at mylovablepest@gmail.com.

Please note: I don’t accept monetary compensation or promotional “freebies” and I am selective about the content that I share. The intention for these conversations is to amplify inspiring stories and important information – and not to market/promote products.

We can all learn so much from each other and do our part to support each other – and I look forward to hearing and sharing your stories.

Orenda: Nature’s Invisible Energy

I recently learned the word, Orenda, a spiritual energy believed by the Iroquois to exist in natural objects.

Lately, I’ve been listening to the music of Ferry Corsten. His uplifting songs resonate with me during these challenging times.

T is familiar with electronic trance music or as he calls them: songs with no words. For a while, Martin Garrix’s Animals was T’s repeat request.

To me, trance epitomizes the power of music. Stripped of words, melodies and rhythm form a universal language that connects with listeners.

Corsten’s latest song, Orenda, has his signature joyful melody, spiritual themes and masterful build towards an emotional climax. As always, the sonic journey feels transcendent.

I was curious what Orenda meant. I thought it was related to astronomy and I was enlightened when I learned its beautiful meaning.

With each repeat listen – the song is on heavy rotation – I reflected on the words energy and nature and the ways they appear in our lives.

Endless Energy

As most parents of a child with FASD will tell you, the child’s endless energy is exhausting.

Neighbours often remark about how T is super energetic. I now understand why there are wheels in hamster cages.

I’m slowly reframing how I view T’s hyperactivity. Rather than see it as a negative, the hubby and I try to find productive ways to refocus that energy – to help him better manage daily life.

Like other kids in similar situations, sports provide T with a healthy outlet to burn energy.

Now that summer is here, outdoor pools are a lifesaver. I love watching T’s confidence and ability grow with each visit.

Nature’s Healing Energy

Running like the wind at Presqu’Ile Provincial Park.

Nature provides so much respite during this pandemic. Whether it is a Spring walk as nature reawakens from winter, a long summer hike, or a fall colours excursion, our bodies re-energize from the healing outdoors.

I’m thankful T has gained an appreciation for the outdoors and that he looks forward to and enjoys our simple rewarding family outings.

I believe that T finds freedom with nature. In these vast spaces, he runs as fast and far as he wants, splashes water as hard and loud as he wants, and can be himself with abandon.

Collisions of Energy

I’ve written about T’s explosive moments. He’s making great gains in learning to regulate his emotions; it’s a work in progress.

One of the best lessons I’ve learned from other parents on similar journeys is to be the calm in a child’s storm. Responding to an explosive moment with an explosive reaction is counter productive.

I know, this is such obvious common sense advice. But it took me a long time to figure this out. I still have challenges with staying calm in T’s storms, but I am a work in progress too!

I was Googling “in the storm be the calm” but typed “clam” by mistake. I think this image from Reddit still applies. Look how calm that clam is!

Renewal of Energy

Energy is finite – and self care is an important part of my survival strategy to parenting T.

After a gruelling three months of virtual schooling while working full time, I took the last week off to recharge. Bonus: his daycare reopened on Wednesday!

This past Friday, I had my first day to myself with zero responsibilities in forever.

I sat down on a patio – for the first time in over a year – and enjoyed a delicious bowl of tonkotsu ramen and an ice cold can of Coke while soaking up the sun and feeling a cool breeze. All by myself and boy was it rejuvenating!

Sliced pork ramen in delicious pork bone broth.

Transformative Energy

Storms are said to possess orenda. This tidbit resonated with me when I first read the definition, but I wasn’t sure why.

Shortly after I arrived home from lunch on Friday, dark clouds that were promised all day finally appeared and soon enough, thunder and lightning ripped through the quiet sky and heavy rain poured across the city.

After the storm, I looked out our window at the hubby’s garden. He has been working so hard at it and it looks wonderful. I told him that he doesn’t need to water the plants and that they were going to bloom further after the downpour.

That was when it clicked why the word orenda resonated with me.

As we weather T’s stormy moments, like plants under dark skies, we too are inevitably transformed and grow through the energy of the storm.

Helping Kids Set and Achieve Goals

One recent win we had was helping T set daily goals that positively impacted virtual schooling.

T’s Child and Youth Worker was motivated – as were we – to get him to participate more in class.

Depending on which camp you fall on, you may find token charts useful or eye rolling in shaping behaviour of kids with special needs.

For us, they are mostly effective tools; although, it has yet to help with T’s ongoing challenges with using the potty, but that’s another rant!

T’s CYW created a simple chart: he had to participate four times each school day to earn his Switch at the end of the school day.

The system worked like a charm. We saw a kid who was hesitant to participate – sometimes having explosive rage meltdowns when we asked him to – to a kid who was motivated and even felt good about sharing his thoughts.

As we started to see this slow positive change, I thought about other ways we could use goal setting in T’s day-to-day life.

It is very important to me that T develops a good work ethic. I am mindful there will be challenges as a result of his prognosis, but I refuse to let it limit him from reaching his potential.

I am aware that despite the best efforts of his teachers, kids will generally be behind because of the setbacks from the pandemic.

The hubby and I are using weekends to keep the learning happening with T.

We don’t overdo it, because we all need to have fun and rest too: 20-30 minutes of reading and a little bit of math and writing practice.

We work on it first thing in the day, while we’re all fresh and T is at his peak and less grumpy self.

We also remind him what he’s working for: time with the Switch or tablet, as well as swim time at the outdoor pool.

And miraculously, T is often agreeable and the meltdowns have been minimal – when we make it clear to him what he’s working towards.

T’s writing has come a long way. He is now using a pencil instead of a crayon. He still needs to press harder, so his writing is not so faint. But what a difference in terms of legibility.

Reading is a work in progress for T.

I asked T’s teacher if she’d be willing to lend us a summer’s supply of books that we can work on with T. These books are simple and short with repetitive structure and a focus on sight words.

Thankfully, she agreed and I pledged to reimburse any book that we lose or damage. This is going to make a world of difference in helping T avoid the summer slide.

I will say, the hubby and I are especially proud of how far T has come with math.

We have read that individuals with FASD often struggle with math. So far, knock on wood, T has been doing well.

He recently started to do one digit addition and subtraction and blew us away when he seems to be able to doing the calculations in his head (he does get very upset when he gets the answer wrong, so we’re working on teaching him it’s ok to make mistakes). Let’s hope this keeps up!

From a math workbook we bought from Costco.

We try hard to be consistent with showing T what happens when he doesn’t put in the work.

We’ve had several days when he didn’t fully participate. So while we didn’t make him feel bad about having an off day, we followed through by not giving him his Switch.

The resulting tantrums tested our patience but we stuck with it. Somehow, I think T understood why he didn’t get his Switch.

If I seem like I’m showing off a pony, I guess maybe because I am! But really, it’s more because I’m so proud of how far this kid has come.

Parenting T comes with soul-draining challenges – and still does! So when we find something that works, we really take the time to celebrate and relish the moment.

While we don’t use exact words like “setting goals” with him, we try to show him through actions what we expect from him.

Most importantly, we try to have fun at the end of each day as a reward for T and ourselves. Fun in the pool, family hikes in nature, McDonald’s Happy Meals, ice cream sandwiches, free time with the Switch and tablet, and so on.

Speaking of goal setting, summer is here! Our main goal is to relax and have fun. May it feel like a long dragged out summer in the best of ways!

There’s a very good chance we’ll get to visit T’s grandparents in the East Coast this summer. Our last visit was in 2018 (pictured above)!

Graduation Day

Two years of growth, unexpected challenges, laughter and tears culminated in a virtual kindergarten graduation.

I can’t thank T’s teachers enough for hosting a virtual ceremony this morning during the pandemic to celebrate this important milestone.

They provided in advance a graduation kit – diploma, cardboard hat, fun sunglasses – to have ready for this morning’s bash.

T’s teachers opened with touching remarks then highlighted each child with a photo and remarks. Then she played three videos filled with uplifting messages, including a read-a-loud of Doctor Seuss’ “Oh, The Places You Will Go.”

In the absence of a live audience at home, I lined up T’s stuffed animals around our tablet.

At the start of the ceremony, T was being his silly self with Moo Moo. The hubby tried to calm him down, which then escalated into a tantrum.

T stormed off from the table – I quickly turned off our camera – and marched to his room. He slammed his door and screamed and cried.

I thought how this moment nicely encapsulated our struggles during virtual schooling.

But a short minute later, T calmed down, came downstairs and rejoined the ceremony.

To me, this moment perfectly captured the huge growth we’ve seen in T these last few months with regulating his emotions, sitting down in the class, and actively participating.

Yes, it was a constant struggle and required a lot of work and patience – on our part, T’s teachers’ part and T’s part – so I couldn’t think of a sweeter way than to end our kindergarten journey on this high note.

I’d like to look back at T’s kindergarten years and give thanks to the blessings and the challenges that brought us to this very moment in time.

I’d like to first thank the Kindergarten Intervention Program that T had the blessing to be a part of in his junior kindergarten year. 

After a disappointing end to his Montessori pre-school years – when he was not invited back to the school after a parent complained about his behaviour – T got into a specialized kindergarten intervention program at the public school board that had a small class size and specialized staff to support behavioural challenges.

It was, therefore, devastating to find out – from reading an article in the newspaper! – that the school board decided to cancel the program; because we were seeing first hand the positive impact the program had on T.

I’d like to next thank the school administrative staff – including T’s Principal, Superintendent, board staff and trustees – who listened to us when we raised our concerns, including through a deputation I made at a board meeting.

Thanks to their openness, T received a one-on-one Child and Youth Worker in senior kindergarten, when he was integrated into a regular classroom.

I’d like to thank the pandemic for bringing our family closer.

I can’t describe in words how exhausting and hard the last year has been with having to juggle full time work and virtual schooling/parenting a special needs child – in addition to unexpected events like my mom’s stroke.

But we made it and the hubby, T and I are closer and stronger thanks to this adversity.

I’d like to thank the amazing social services staff who supported T the last two years, from his amazing daycare staff and the Special Needs Resource Consultant that worked with the daycare, to the amazing developmental pediatrician, family psychologist and behaviour therapist at Surrey Place.

It truly takes a village and we’re so lucky to have a great village.

I’d like to thank T’s teachers, who were true heroes.

I don’t think people realize how insane it is to virtual school young kindergarteners!

They were so organized, creative and thoughtful in how they structured the class and how they adapted along the way to make it a smooth and rewarding experience for everyone.

I’d like to thank T’s amazing Child and Youth Worker.

She worked so hard to adapt to T’s strengths, challenges, and the pandemic.

She implemented many strategies to help him succeed, like one-on-ones, virtual scavenger hunts, and a token chart. They all contributed to T’s ability to now sit down, complete his work, participate and believe in himself.

But the hubby and I save our biggest thanks for our lovable little pest.

I think back to a year ago and even just six months ago.

He has come a long way with learning to better regulate his emotions, after explosive moments.

The biggest way we see this is how he gets up and storms off into his room. This may seem horrifying to most parents, but to us, this is him proactively finding a space to cool off. Sure, there’s screaming fits and crying, but he is able to calm down quickly now and rejoin the activity.

And get this, he’s even come up and said sorry after one of his moments.

This is huge.

Thanks to the persistence and patience of his teachers – and us parents too! – he mostly sat down through virtual class in the last three months.

Sure, he still fidgets, gets silly and restless, and sometimes gets up and wanders off – but I’m focusing on the many more moments he sat through a session.

The biggest gain that I was so happy with was his active participation in class.

His CYW implemented a token system where T had to work for his Nintendo Switch at the end of the school day. To do this, he had to participate at least 4 times during each school day.

It worked like a charm and on this second-to-last school day, T was the most active participant in his class.

I wish T could see and know just how bright and capable he is. But we will work on that. Life is a work in progress after all.

Most of all, I am so thankful for all that this kid teaches us – about resilience, adapting when things go off the rails, living in the moment, and focusing on the big picture.

The hubby and I are so proud of how T is ending his kindergarten journey and how he’s grown academically and socially. We’re so thankful for his teachers, CYW and all the supports on Team T.

And now, it’s time for rest and relaxation.

We’re gonna enjoy this moment and focus on having a super fun summer. Grade 1 can wait. We know the ups and downs will continue, but we are ready for it.

Your Disco Needs You

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

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

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

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

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

Basically, it’s upbeat and cheerful.

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

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

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

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

“So lets dance through all our fears

War is over for a bit

The whole world should be moving

Do your part

Cure a lonely heart.”

– Your Disco Needs You

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

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

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

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

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

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

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

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

I learn a lot from T about letting things go.

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

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

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

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

I chose to boogie woogie.

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

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

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

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

Coming Out… Again and Again

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Castles in the Sand

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here’s to a long fun summer for everyone!

“Yes, I Can…”

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

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

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

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

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

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

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

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

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

So back to the monkey bars…

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

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

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

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

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

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

Hello, monkey bars, our old friend.

I tried to break it down into bite size steps.

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

He looked at me with apprehension. But did it.

Big celebratory cheer from me.

“Now try another.”

“I can’t!” He whined.

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

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

I didn’t push him this time.

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

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

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

He grabbed the first part and I cheered him on.

Then the second. The grandma and I cheered.

Then the third. He had an excited smile now.

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

Then the fifth. Sixth.

His arms were trembling and his cheeks red.

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

“Come on, you can do it!”

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

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

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

“Yes, I can,” T said.

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