Trees tell the story of time. Standing on the rocky Georgian Bay shore scanning the tree line, I see hints of red, yellow and orange.
The autumn chill is in the air.
Labour Day is the last blast of summer vacation before school starts. This year, school is starting a week late to give schools an extra week to get organized amidst the chaos of the pandemic.
Our family usually goes camping over Labour Day weekend. This year, we chose a day trip back to Killbear Provincial Park.
It was cloudy, windy and cool when we first arrived. But the clouds soon parted and the sun came out, revealing a beautiful late summer afternoon.
Since our first visit with T in 2016 at age 1, we started a tradition of taking a photo of him by the windswept Killbear Tree.
It’s a wonderful way to tell the story of the passage of time.
Of when he was just starting to take his first steps and getting confident with walking in July 2016.
To a return visit in July 2017 when he’s a full on road runner, charging up and down the rocky shores with confidence.
To our most recent visit this weekend – September 2020 – where you could see his growth spurt.
I look forward to many more visits to Killbear over the years to come.
I hope to print, frame and hang these photos one day.
Soon, the tree canopies in Ontario will be draped in the fiery and warm colours of Fall before they are covered in Winter’s snow and ice; naked in the cool early days of Spring before they bloom in the reemergence of Summer again.
Time flies so quickly and I’m thankful for the wonderful memories we made over this unusual and challenging summer.
I saw an example of this in action at the playground next to the outdoor pool we visit several times a week in the early evenings.
While I line up to get into the next hourly pool slot, T plays in the playground.
There is a zipline-like contraption that has eluded him and kids his height all summer.
He’d always stand on the ledge, reaching, jumping to grab the metal handle to no avail. Sometimes, I’d lift him up and push him across.
This past week, he was reaching and jumping for the handle again. Two other similarly-sized girls stood behind him looking up at this handle.
T then spotted a red plastic milk crate – because, of course, a milk crate would be lying around in the middle of a playground.
He picked it up and placed it onto the ledge. Stepping onto the crate, he was finally able to grab the handle and he slowly swung his way across.
When he made it across, I told him it was time for the two girls to have their turn.
He had a short fit and then I reminded him it’s nice to take turns and to share.
He grimaced and then picked up the milk crate and placed it for the other girls to have their turn. And he then went to the back of the line.
Once I saw they established a rhythm, I left them alone and went back to line up for the pool.
It made me smile seeing T problem solve and to initiate play in such a cooperative way.
Social interactions with other kids is an ongoing challenge for T. But on this day, he was a winner.
By lifting himself and the other kids up, he also lifted my spirits that afternoon.
A short while later, the pool reopened its gate and it was our turn to swim. I called for T. He hopped off the ledge on the playground and ran over to join me for a refreshing swim.
You can go home again and we did. This past Sunday, we took a late afternoon drive to our old neighbourhood.
T had been feeling nostalgic and wanted to see the old playground and we spent close to two hours playing there in the late afternoon.
The hubby and I lived in this previous home – a tiny townhome – for 13 years, 3 of which were with T.
It brought back so many happy memories walking around the old complex, park and playground.
I remembered my 30-week parental leave in 2016 where I’d take T to the park 2 to 3 times a day.
I remembered his awkward steps while he was still mastering how to walk. I remembered feeling nervous when he’d climb the stairs up to the slide. Now, it feels like he’s quickly outgrowing this playground.
T going down a slide for the very first time!
It was nice being in a busy park, while observing physical distancing, as our current park is often a ghosttown.
Our visit reinforced how thankful we are for having moved to our larger home. I don’t know how we would’ve survived lockdown in our tiny old home with neighbours below us. We would’ve driven them and ourselves insane!
It makes me happy when T remembers and asks about things that happened “when I was a baby.” My earliest memories of my childhood were when I was 3, so it’s awesome T remembers bits and pieces from earlier in his life.
Oh and we also ran into T’s old classmate Anna!
The two of them got along so well and always played so nicely when we’d see her in the park.
I didn’t even recognize her, as she has grown in over a year and her hair grew so long. Her dad recognized T and us.
Sadly, the two didn’t play together this time. When we encouraged him to play with her, T said “I’m feeling very shy!”
So they just played within distance of each other instead.
When her dad told her they had to go home, she turned to look at T, as if waiting for him to say bye. And he did say bye. And that made me smile.
T playing, kinda not really, with Anna (face covered).
At a recent camp pickup, the staff told me they had a sad moment. T told her he had a dream that his Daddy and Papa died.
He told her that “he got very sad because he’ll be all alone.”
T also recently told me that he had a dream where he saw me in a frozen lake and saw my face, presumably dead.
When I sit with him at bedtime and ask him to close his eyes, he’d say that he doesn’t want to close his eyes because he’ll have a dream.
He’s brought up more than once the ice dream.
On one hand, I am sad that T had these dreams.
On the other hand, I think it’s incredible that T is able to share his feelings and articulate his thoughts.
I find this to be a mature quality for kids his age, special needs or otherwise.
As a parent, it is important for me to teach T that life is not sunshine and joy all the time. I don’t want to shy away from, ignore or repress difficult topics and unpleasant feelings.
Giving T the skills and the vocabulary to process not-so-pleasant emotions and thoughts is all part of helping him build resiliency.
So we talked about his dream and I assured him the hubby and I will be here for him.
It’s important to normalize hard topics with T in an age appropriate way.
The hubby and I are T’s safe space. I have no doubt that this is how he feels.
We want him to continue to know that he can always share his feelings with us in a safe and non judgmental way.
Similarly, with the pandemic, we talk openly and truthfully about the virus. We keep it factual and concise, keeping the audience in mind.
It’s incredible to me how insightful kids can be and how T often gets things more than I give him credit for.
It’s one of the positives of parenting him and I realize this is a privilege and not the same for all kids. So I’m thankful for that.
During our recent roadtrip, I asked T to come out of the car, to stretch his legs and to go inside a store. He wasn’t feeling in the mood, so he yelled, “I can’t, there’s disease out there!”
I had quite the chuckle from that reaction.
Perhaps one of the most profound conversations T, the hubby and I have had recently is about adoption.
A cartoon filtered family photo – the only face shot I will share of T on this blog. 🙂
Since T was three, I started telling “The T Story” as part of our bedtime story routine.
It is a very simplified and short version of how T came into our lives.
I never used the word adoption but more about how T came to our family at age one from a different family.
Then one day, T asked me to explain a bit more and so I said he’s adopted.
He now understands he was with one family – whom we still keep in touch with – and that we adopted him.
There’s still a lot about his life that he doesn’t know about, like his birth mother and his invisible disability.
And these are all things we will talk about with T as he gets older and in age appropriate ways.
I don’t think these conversations will be easy, but they will be necessary.
Truth always prevails in the end and so we decide to live life in truth and reality – and trust and hope these conversations will be positive.
Contrary to what Jack Nicholson seems to think, I think T can handle the truth!
One of the most heartwarming but also hilarious moments during our recent roadtrip was during a hike at The Cup and Saucer Trail at Manitoulin Island.
We passed by a family with a young girl and a dog. T asked to pet the dog, as he does whenever we pass by a dog.
The girl, around his age, told T that the dog was adopted.
T blurts out immediately in response, “I’m adopted too!”
We celebrated my cousin Tracy’s 40th birthday this weekend. It was the first time we saw her family since lockdown began.
When my family first came to Canada, one of the first friends I made were my cousins Tracy and J.
My mom and her siblings are very close and we saw my uncle’s family regularly. I had frequent sleepovers with my cousins and I was included on their summer trips.
Tracy has Downs syndrome and she was the first person I met that had special needs. Growing up with her normalized the idea of special needs.
It showed me the positive possibilities and outcome of dedicated parenting and a supportive environment.
Today, thanks to her parents’ advocacy, Tracy works three part-time jobs at a fast food restaurant, a library and Toys R Us. She has a busy social calendar with her mom’s friends.
Attending the Power Rangers Morphicon in Los Angeles in Summer 2016.
Tracy was our flower girl when the hubby and I got married in 2009.
She is also my friend to talk about Power Rangers and Sailor Moon with, which we both grew up loving and still love.
In Summer 2016, shortly after T arrived, Tracy and I flew for a weekend trip to Los Angeles to attend a Power Rangers convention. It was fun! I can’t wait for T to get into the show.
Tracy’s mom was one of my two references for our adoption application. When we did our homestudy, I spoke about how growing up with Tracy has prepared me for potential challenges and to face them with a positive approach.
We didn’t have a 40 candle so the 3 had to do.
Growing up with Tracy has taught me about compassion, never underestimating people, advocacy and creating a space for everyone.
I look at how my uncle and aunt raised Tracy when I think about parenting T.
They and J are among the handful of people who truly understand the challenges of raising a child with great potential and challenging needs and are very supportive and inclusive of T.
They’ve invited T to cottage trips and on day trips like to a lovely Lavender farm (pictured at top).
Good thing the pontoon wasn’t really on!
Tracy and her brother have been so great and supportive of T. Although she finds him very loud and hyper. It’s true, he is!
T was so excited about seeing Uncle J all week. He has a dog and all T talked about at home and school all week was seeing Uncle J and Sesame.
It was a nice weekend. My aunt rented a pontoon at Port Perry and we went fishing and swimming – wearing masks and being mindful of distancing.
Then we had them over our home for dinner and cake!
Ok, before everyone gets excited – we’re doing no such thing!
But if it’s one thing the hubby and I have observed and spoke a lot about during the past six months of lockdown, watching T play by himself at home and in the playground, or seeing T sit by himself in the back seat during the long drives of our recent roadtrip, it’s that we wish he had a full time buddy to play with.
T has often brought up – and whenever we ask him if he’d like a sibling – wanting a younger brother.
The hubby and I are both pragmatic people who like to plan ahead. We already both know where we’re going to be buried, for example.
When raising a child with special needs – no matter how optimistic we are about his future – we want to have a plan in place for all scenarios, like in the event that he is unable to live independently one day.
We also think about and have already established a plan for his care in the event anything happens to both the hubby and I.
There are so many potential benefits as well as challenges to giving an only child a sibling.
The first and foremost that comes to mind for T is companionship. Sure, there’s a big chance they’ll end up annoying each other, but in T’s case, I see a child with tremendous caring qualities and I think a sibling will bring out the best in him and help him feel less lonely.
When T is older, this sibling could also be there for him, if needed, when the hubby and I are either gone or less able to care for him.
On the flip side, I often think about how this dynamic will change our family.
On private forums we follow, we’ve read horror stories about familial dynamics being thrown off balance. The special needs child ends up harming or causing stress for the younger sibling.
My gut and heart tell me that this will likely not be the case with T – but reading these personal and often gut-wrenching testimonials from struggling parents is sobering.
And let’s be completely frank here, if we end up with another T – and the challenges we have to deal with – I will slit my wrists.
I love T to death, but his challenges consume so much mental, physical and emotional energy.
Thinking about our adoption journey, it took 7 years from start to T. The hubby and I are turning 40 in the next few months. So if we were to make such a decision, time has already flown by.
So we are likely not gonna pursue this – but the thought of it sure is nice.
I also remind myself T has a cousin in another province whom he sees 1-2 times a year and foster siblings – like J pictured above with T from a gathering three years ago. T’s foster mother does a great job of keeping us and the foster siblings all connected.
At the end of the day, this is all about T and what will give him – and our family – the most positive addition of light, love and energy.
I think back to a detour at a playground by the side of the highway that we took during our recent roadtrip.
T approached and played so well with a group of three young sisters – all so blond and beautiful – and I thought to myself how lovely it would be to have a mini-T to play with all the time.
Then he threw a tantrum when I said playtime was over and we had to leave – and that wistful thought quickly evaporated.
August 16 is a Holiday at home. It’s my dear M’s birthday and we play her songs all day long.
It’s fun introducing T to things I love – books, TV shows and movies, games, food, places, and yes, music.
If he only knew “Jacket B” isn’t what his favourite Madonna song – “Unapologetic Bitch” – is really called. Sigh. He says he likes the Diplo-produced song because the zany intro is spooky.
I’m sure his teachers will find words other than spooky if he were ever to figure out what the actual words are! So best to put on some Disney tunes during our long drives instead.
With M’s works, the deep cuts – songs that are not released to radio – are the ones I gravitate to.
“Gone” is one I revisit from time to time. It closes her 2000 Music album and I love the depth in its simplicity.
The meaning of its lyrics changes at different points in my life.
Today, as a parent of a young boy with great potential and challenging needs, it means something entirely different to me.
One of the hardest moments for me during lockdown was when T broke down in tears after seeing the playground wrapped in caution tape.
I still remember the pain and anguish in his voice as he asked me why everything was closed?
Thankfully, playgrounds reopened two weeks ago. I’m mindful there is a possibility we may go back a few steps in lockdown, so I’m enjoying these moments with T as much as we can now.
It was a pleasure seeing him run full speed towards the playground.
“The disease is gone!” he exclaimed when he saw the caution tape is gone.
“Not quite,” I explained we still need to be cautious but playgrounds are open for now. It’s best to keep the preamble simple with kids like T!
The smallest things always feel the biggest as a parent. T scaled across the monkey bars, from one side to other – something he was not able to do nor was willing to try the year before.
Playgrounds for me are a place of great joy and heartache.
It is a joyful place when I see T play with full abandon. There are seldom times when he finds a connection with another child and they have fun together.
But more often than not, T is playing by himself. Running around excitedly, pretending he’s either a race car or a dinosaur. Making loud revved-up noises or growls.
These moments may seem cute but it is also these kind of behaviour that scares off or keeps other kids away.
Earlier this week, we had gone to the playground after dinner. There were a dozen kids – a few years older than him. They consisted of several groups of siblings who knew each other.
T, as he often does, started circling the kids and ran around them excitedly.
On this night, he pretended to be a robot. Eyes wide open and walked like one. When he got close to the kids, he started making his noises.
I sat nearby on a bench and I was both amused and cringing. One of the girls had this amusing look of fear at this strange little boy.
So naturally, they went off on their own to play.
When the oldest kid initiated the group of kids on a chase, T started running with them in parallel play. Chase is T’s favourite game.
But the kids didn’t pay attention to him. When T started circling them again and made his usual dinosaur sounds, one of the older kids shouted at him to go away and leave them alone.
I watched from the park. I was tempted to get up and intervene but as a parent, I remind myself to give him the room to learn the skills he needs to cope in a social setting.
For children with an invisible disability like T’s – a prognosis of at-risk FASD and recently medicated for ADHD – understanding how to effectively navigate a social situation is often challenging and making and maintaining friendship is often a lifelong struggle.
Giving kids with special needs the skills and tools to navigate a social setting is very important.
The hubby and I have learned so much – and continue to learn – through the advice of our wonderful supports, like a child psychologist and behaviour therapist, the many ways to help T build his play and social skills.
One method is role play.
Watching T play, I often want to go up to him and tell him to stop acting weird and to use his words instead. He has a sweet voice and when he turns on the charm, it is quite endearing.
But I don’t do that, because I don’t want to make him self conscious or to lose his personality.
So I made a note to do more role playing with him of pretend scenarios with other kids. And to encourage him to use words to ask other kids to play with him. Just keep reinforcing it until it becomes second nature to him.
And that is why it’s so important to put T in social settings to play and interact with other kids – during these pivotal development years – and something that weighed on my mind during the lockdown months.
I know he’s capable of doing it, because I’ve seen him do it before – like playing wonderfully with a group of kids at a pit stop during our roadtrip. And I recently saw him do it again.
On a recent evening, T and a little girl played together. It was a simple game of running up and down the slide, making a contest of it.
Then they played chase with each other.
The sun was setting, it was way past his bedtime. But I let them keep playing together until the girl went home.
T went home sweaty, hair all messy and clothes all dirty. A good sign of a fun evening of play.
A year after starting at his daycare, I finally met the wonderful staff member who has won T over.
I’ve always believed that teachers and educators play an important role in a child’s life and have a big influence on their self concept and their enjoyment of learning and school.
For kids with special needs like T, an understanding and empathetic teacher can set a positive tone. Or alternatively, a teacher who does not understand T’s challenges nor is equipped nor willing to try to learn can have an adverse effect on T’s experience and viewpoint on school.
I have no doubt that we will encounter both kinds in T’s school journey. Absolutely zero doubts.
I still remember sitting down with his Montessori teacher in his challenging preschool year at a parent interview night. She told me point blank she had asked the special needs consultant for advice on how to deal with T’s behaviour.
I remember thinking to myself, “Shouldn’t you know these things as a teacher?” In hindsight, I appreciate her candor and willingness to learn.
We’ve been blessed to have had a great teacher in T’s recent junior kindergarten year, a wonderful man who understands how to work with kids with great potential and challenging behaviors. I learned a lot from him that I will share in a future post.
A child’s typical week is mostly spent in school and in T’s case, an after school program.
We’ve been so blessed with an amazing after school program that wants to work with us. They applied for a government fund that allows them to hire a one-on-one support for T.
All the staff there have been so awesome, adaptive and caring.
But there is one particular person who T adores and talks about frequently at home.
Mr. Alex.
A guy whom the daycare staff uses as an incentive for T to be on his best behaviour.
If T does a good job and listens well, he can go up to the second floor to hang out with Mr Alex.
T says Mr Alex is funny and lots of fun.
During lockdown, when schools and his after school program were closed, T sometimes asked about Mr Alex.
When we put T in day camp this summer, we were hoping the same team of staff would be there. And they were!
During pickup on Monday, a young man whom I’ve never met before opened the door.
“Are you Alex?” I asked.
He smiled and said yes.
I would’ve shook his hand, but you know, pandemic. So all I said in response was, “It’s very nice to finally meet you. T adores you and talks about you a lot at home.”
I saw him again yesterday afternoon. He made sure to first point out the Batman keychain toy hanging from T’s backpack.
He organized a scavenger hunt and these Kinder surprise toys were the prize.
Before T walked out of the school, he turned around and gave Mr Alex a big tight hug.
“I love you, T,” he said.
Then T called him a poopy face.
In T’s world, that is genuine high love and praise.
Parenting a child with special needs has taught me the journey is often times more important than the destination.
And more interesting, rewarding, fulfilling and one where you will be stretched, bended, tumbled, spun around, flung, chewed up and ultimately become all the better because of it.
The hubby and I made a purposeful decision to keep a loose itinerary.
We knew where we were headed and what the pit stops of each day were. But we kept the agenda loose enough so we could accommodate spontaneous detours along the way.
It was thanks to this intention that we made so many memorable memories.
Like taking a short hike to the top of picturesque Silver Falls in Wawa, where T threw rocks to the roaring river below.
Or stopping by many beautiful beaches along our gorgeous drive along Lake Superior like the white sand and clear water of Pancake Bay (below) and Katherine Cove (second image below).
And the real showstopper, Manitoulin Island, where we hiked a challenging 5km up the Cup and Saucer Trail and were rewarded with stunning cliff views.
For an initial while, I became so fixated by it and I despaired over it.
Ultimately, I don’t know what the future will hold but I do know that T will become an adult. Instead of focusing on the end destination, I decided to focus on what is immediately ahead of me.
To be present and to embrace the journey and not get so fixated on the destination.
I embraced the detours.
And believe me, as a parent of a child with great potential and special needs, there will be many detours. Some you plan, some that are thrown at you without notice that you have to deal with.
Through the detours – planned and unplanned – the hubby and I met wonderful medical experts, service and therapy providers, teachers and early childhood educators that cared and made a difference.
We found a strength and a determination that we didn’t know we had.
We also had many moments of great frustration. Akin to running into a dead end on a hike. And annoyances. Akin to realizing you forgot bug spray and getting eaten alive by mosquitoes.
But you can get through them and you will push through every single one of them. Some moments, you emerge triumphant. Some moments, you’re so winded and are just glad that it’s over with.
And eventually, you get to your destination.
Like the top of a hill with a stunning cliff view. And you forget for a moment how hard it was to get up there.
And you take it all in. And you feel grateful for every step, every mile driven, the good, the bad, the annoying and the downright difficult that took you to that moment.
As a parent, my job is to help guide T through his life’s journey. Teach him the skills and give him the tools he will need to find his way. Clear the path for him, keep him from falling off a cliff or stepping into poison ivy, and help him when he is unable to help himself.
But it’s also my job to have the confidence and faith to give him the space to find his way.
This roadtrip showed me a kid who has tremendous heart, curiousity, a love for adventure, determination, an interest in helping himself, a need to lead the way.
He hiked some challenging trails and made it on his own. And he asked for help when he was stuck.
Perhaps I’m being too idealistic and still glowing from vacation buzz, but I can’t help but draw parallels between the hikes and detours we took with the longer hike of life we are taking with T.
There will be – there already are – twists, turns, uphills and downhills along the way. But T will, one way or another, make it to his destination. At his own time, pace and terms.
PS. That ATV at the top picture was not ours. We just took a picture with T next to it. Maybe when he’s older one day!
We spent Friday at Killarney Provincial Park, where every corner looks like a painting with its smooth red rock facade and Georgian Bay backdrop.
Our friends and I have been wanting to camp here for years but sites always sell out. It took a pandemic to get the hubby, T and I here – sans camping. I wish my friends could’ve joined us.
We did an early afternoon hike. It was medium difficulty level and T handled it like a trooper.
He learned about route markers today and ran ahead of us to find them – turning the experience into a game in his imagination.
“I love going on adventures,” he said as he “snatched” each “coin.”
An hour into the hike, we found a secluded spot by the water and claimed it. We swam in the cold water for a good hour.
We then enjoyed a spread of watermelon, veggie platter, chips and cold cuts we prepped earlier from the supermarket.
Hearing the constant waves brushing up against the rocky shore and seeing the afternoon sun cast a glow against the red rocks was very calming!
The sun was beginning to set and we didn’t want to leave. But had to because we still had an hour-long hike back to the car.
T did a great job on this day. This was a day of positive memories that I want to lock in my heart forever.
“I love you, my wonderful parents,” T said at bedtime. Perfect end to a perfect day.
We arrived in Thunder Bay close to 10 on Sunday evening. T screamed, “Why does it look like this? Where’s the thunder?!”
The scenic adventures that unfolded over the following three days of our Summer 2020 family roadtrip more than made up for his initial lack of enthusiasm.
First stop on Monday: Beautiful Kakabeka Falls, the second tallest falls in Ontario, behind Niagara. The scenic views out into the canyon and the roaring water were so calming.
And we spotted a bald eagle! And these aren’t the kind of birds who get scared and fly off by a hyperactive screaming child!
After lunch, we visited the Terry Fox Memorial. I learned that Thunder Bay was the last stop in his unfinished Marathon of Hope and the memorial was created near where he took his last steps.
As the hubby and I took in the views, T and an eight-year-old boy played chase and hide and go seek with each other for 20 minutes. It was nice to watch them play with abandon.
After dinner, we enjoyed a sunset hike at nearby Mount McKay and took in panoramic views of Thunder Bay below and Lake Superior in the distance.
On Tuesday, thanks to a colleague’s recommendation, we did an early afternoon hike to Ouimet Canyon, a 30 minute drive outside of Thunder Bay. The view is stunning!
We then hiked at nearby Eagle Canyon and crossed Canada’s longest suspension bridge – 600 feet long.
If you ever need a cure for constipation, this is it. And T crossed it like a champ!
On Wednesday, we spent our last day in Thunder Bay at beautiful Sleeping Giant Provincial Park.
The highlight of our visit was a scenic hike to view the Sea Lion rock formation. If you ask me, it kinda looks like a Sleeping Giant!
It was a moderate hike – not difficult but challenging enough to give T a workout.
There were many gorgeous lookouts, including a pebbled beach with blue water and the soothing sound of big waves.
I’ve written numerous times about wanting to instill a love of the outdoors and nature within T and to encourage a love of adventure and to step outside of his comfort zone.
It’s been pure joy to see him get out of his shell and to embrace adventure during this trip.
We left Thunder Bay bright and early on Thursday for an 11+ hour drive back to Sudbury.
The late Terry Fox took his final steps in his unfinished Marathon of Hope in Thunder Bay, Ontario.
We visited the Terry Fox monument on our first day in Thunder Bay on Monday. It honours his memory near the spot where he took his last step.
Terry Fox is a famous Canadian athlete whose right leg was amputated when was diagnosed in his late teens in 1977 with osteosarcoma. But he continued to run with an artificial leg.
He began his Marathon of Hope in 1980, determined to jog across Canada and raise $24 million for cancer research. He logged 5,373 km over 143 days before he was forced to stop from pain and because his cancer had spread to his lungs. He died nine months later at age 22.
Nearly four decades after his death, schools across Canada take part in the annual Terry Fox Run, where students raise hundreds of thousands of dollars annually in support of cancer research.
T took part in his first run last Fall and I remember smiling at the pictures of our roadrunner with a big smile.
Heroes are so important to have in life, especially for children to look up to, to be inspired by, and to draw hope from.
I think back to my childhood heroes – the Power Rangers and the X-Men were just a few who occupied my imagination.
Looking back, I always felt the X-Men resonated with me, because I drew a parallel between the persecution of mutants with being a gay teen.
And I often think: Who will be the heroes for T?
Diversity and representation are so important for children to see themselves reflected in the books they read, the shows and movies they watch and the music they listen to.
I think the Power Rangers appealed to me, because it celebrated diversity and featured Asian and Black protagonists. The 2017 Power Rangers reboot movie featured an autistic Blue Ranger.
When I survey popular culture, where are the characters with the invisible disability who are kicking ass and not those who are just inserted into the narrative as a token gesture?
Real-life heroes make big impacts too.
As an adult, I’m more inspired by real life heroes, those who’ve done something with their lives, those who’ve overcome adversity, and those who spread light to others in the world.
When we first learned about T’s prognosis of at-risk fetal alcohol syndrome, I looked for the success stories, the living examples of kids, teens and adults with FASD who are kicking butt. The reality is there are very few stories online – although these individuals, like motivational speaker Myles Himmelreich, are indeed inspiring.
One of the wonderful saving graces I found was FASD Caregivers Success, a private Facebook group with 4,000+ members that include parents and caregivers.
It was very refreshing to hear the raw stories and day-to-day experiences of people in the trenches, who share their testimonies with such truth, rawness, heart and often times, humour too.
These people are my heroes today. They give me inspiration and hope.
Every child needs and deserves a hero.
And I hope to do my part to help T find the heroes in his life – real and imaginary – who will help him dig deep into his soul and push through the hardships and the challenges.
One day during the lockdown, T said out of nowhere and completely unprompted, “Papa, you’re my hero.”
So for now, I am happy to be one of T’s heroes.
And you know what, he’s one of my heroes too.
This past Monday, as the hubby and I were enjoying the views of Lake Superior from atop the Terry Fox Monument, T initiated play with an 8-year-old.
For 20 minutes, they played chase and hide and go seek with each other and with total abandon.
I enjoyed watching them laugh and smile. And looking up at Terry Fox, I think he would approve of this child’s play too.
We were determined not to let the pandemic take away our summer tradition – the family roadtrip.
In August, we always take two weeks off to visit the hubby’s parents in New Brunswick, two provinces East of Ontario, and add a detour. This year, we hoped to visit New Hamsphire.
It goes without saying the pandemic kiboshed those plans.
So we took the opportunity to explore our province – which had recently reached Stage 3 of 3 of its reopening plans – to head north to Thunder Bay and explore detours along the way and back.
In my 30+ years living in Canada, this is my first time exploring my province in this depth.
For context, Thunder Bay is a 15-hour drive from our home – longer than to visit two provinces to the East!
We planned activities that allow us to keep to ourselves – provincial parks, hikes and swimming.
We left bright and early on Saturday and divided the drive over two days.
“We’re going on an adventure!” T said excitedly as we drove off from our driveway.
Day 1, we took a detour at Sudbury – five hours from home – and took a photo at the Big Nickel.
Then we drove another three hours north to Sault Ste Marie, our pit stop for the night.
We left the motel bright and early the next day. We had a seven-hour drive to Thunder Bay but we wanted to make a few detours.
The highlight of this day was stopping by in Wawa. There, we went off the highway and drove down a dirt road for 10 minutes until we hit Sandy Beach.
We then walked down a boardwalk that led to a narrow path with tall wild grass on either sides that led to this beautiful white sanded beach.
Would you believe we had this slice of heaven on Earth all to ourselves?!
Well, except for the first few minutes when a cute guy, with his three friends, took off his clothes down to his boxer briefs and ran into the water. The hubby and I were like, “What the hell is going on?” Good thing T wasn’t off to the side drowning, because we were a little distracted!
But soon, the guys left and my family had this gorgeous beach all to ourselves for the next hour!
T ran up and down the beach with full abandon, while the hubby walked around and I was lost in a daze soaking in the wonderful view, inhaling the fresh air and feeling the soft sand on my feet.
It was a chilly and cloudy day – 16 degrees. But the sun soon emerged. T and I decided to brave the icy water and changed to our swim clothes – we didn’t need a change room because no one was around! – and swam. The cold water woke me right up!
We then sat on a log and opened up a tube of Pringles and a bottle of Coke and shared it.
T built a few sandcastles – destroying them along the way – and then explored the empty beach some more.
We were sad to leave but we had to get on our way as we had another five hours to drive to Thunder Bay.
Near our car, the hubby found wild blueberries growing. So naturally, we had to have some. And I lived to blog about it, so they must really have been blueberries!
We had hoped to get to our motel by 7 pm but ended up arriving closer to 10 as we took a few more unplanned detours.
It has always been my wish for T to develop a love of adventure, to see the world and to be able to step outside of his comfort zone.
Our summer roadtrips – now year 5 – is one way to cultivate that spirit. I am so thankful we are able to continue that tradition this year, despite all the darkness and uncertainty in the world. I feel immense gratitude for the gift of these precious moments – especially the look of joy in T’s face and the sound of his pure glee.
I hope you enjoy the next few days of our adventures with us. The fun has just begun!
I’ve always been a positive person but parenting a child with special needs has reframed how I approach optimism into one of living life with pragmatic positive thinking.
I recently saw this tweet from educational consultant Doctor Marcia Tate on Twitter. She stated that “being positive doesn’t mean you ignore or lie to yourself about problems you face – it means you know you have the ability to overcome them! Keep the faith.” And she includes the inspirational meme below.
This resonated with me, because it puts into context the challenges the hubby and I had with T since we adopted him four years ago – how we were able to get through them and still remain hopeful.
I remember reading up so much about FASD and joining online forums and feeling this tremendous sense of grief, a loss of what I imagined parenting would be like, of what our hopes and dreams for T would be.
I am not exaggerating when I say that these services altered his trajectory. I shudder to think about where T would be today if we had not received that devastating prognosis and thus unlocked these services.
It was smooth sailing for a while. T was in Montessori and although he had ongoing challenges, the teachers were encouraging.
Then in Spring 2019, in his preschool year at age 4, we received a letter from the school administrator telling us that T would not be invited back for the junior kindergarten year. A parent had anonymously complained to the owner about T’s behaviour.
That continues to be the darkest day of our parenting journey to date. I felt the world was truly out to get T and at age 4, he was already marked for life with a scarlet letter.
I took the news so personally and it took me two weeks to calm down and act civilly with the school staff, because I acknowledged this was a decision the owner made and there was no point taking it out on them.
The hubby and I are not wealthy. So public school was the only option forward.
It was through speaking with the principal in T’s new school that we learned about the fantastic kindergarten intervention program, a specialized program with small class sizes focused on addressing behaviour challenges with the goal of integrating the child into an inclusive classroom in grade one.
I met with a review panel – and our wonderful special needs consultant from Community Living Toronto joined me – and T got a spot in the program.
Life worked out for the better after all!
The program was amazing. T was in a room with five kids and three adults – 1 teacher, 1 child and youth worker and 1 special needs assistant. I could not have asked for more.
Then a few things happened. The amazing teacher, who had been with the program since 2004, had to take a medical leave after two weeks of school because of back issues. The replacement the school found was a disaster and the classroom became so unruly.
Then last November, I learned through reading an article in the newspaper that the school board was cancelling the program after nearly 20 years! Their rationale was they were moving to an inclusive model – whereas to me, and they will never admit it, it was a thinly-veiled budget cut.
That was another dark moment in our life. I felt like we had just found even footing for T and the rug was pulled right out from under us.
I didn’t take the news well. I tried to advocate against it and reached out to the media to get the story out. I won’t share the news article or the radio spot here but if you search “kindergarten intervention program” on Google News, you’ll be able to find a December article and radio story.
Despite the article, going on a morning radio show and deputing at a school board meeting, the program was still cancelled. I knew the chances of it being reversed was slim, but it was important for me to try, to say what I had to say, and then move on knowing I’ve tried my best.
What came from the process was that the principal – who is amazing and supportive – was able to advocate and secure a child and youth worker to work with T in the senior kindergarten classroom when he started this September.
So the dust had settled and the hubby and I were finally starting to move on. The teacher came back from his medical leave in February and things were starting to get back to normal. And feel hopeful.
Then the fucking pandemic happened! I repeat, the pandemic fucking happened. I’m actually sitting here and laughing because it is so comical in hindsight how absurdly asinine our luck has been. But I can guarantee you I was not laughing back in March.
Schools had shut down and T came home and we had to homeschool him for four months.
I’ve written countless times about how challenging the four months of homeschooling during lockdown had been, so I’m not gonna regurgitate that.
I only bring up the lockdown again to say that there ended up being so many positives – specifically the gift of time with T and T getting the one-on-one academic supports he needs. Yes, even if that support was us – with valuable daily assist from his teachers.
In closing, life of raising a child with great potential and challenging needs is never easy. As cliche as it sounds, it really is like a roller coaster – up, down and upside down.
Every parent will respond to the challenges differently. But for me, I am still able to stay positive for T because of a few things.
First and foremost, my life is infinitely more fun, meaningful, richer and more rewarding because T is in it. Sure, we have hard days. But the majority of life with T is wonderful.
I’ve also learned to stay positive in a pragmatic way. Things don’t always work out the way I imagined. Actually, chances are, they will rarely work out the exact way that I imagined.
And some moments will be so hard and so devastating. But I truly believe that we are all stronger than we think. And we will get through the hard moments and become all the better parent and person because of them.
While standing first in line to be let in the outdoor pool, T tells me he’s peeing. I look down and sure enough, a puddle of pee on the pavement with 20 people looking at my 5-year-old.
I feel mortified and I could not hold in my embarrassment. “That is disgusting, why would you do that?!” I reprimand him loudly, as if that would make the situation less humiliating.
The elderly woman behind me looks at me but doesn’t say anything. It is those silent stares that kill me. You know what they are thinking especially when they don’t say it.
The pool gates open and they let us in. T, who is often clumsy, manages to find a way to trip on plain flat ground. He has a small scrape on his knee and of course, it’s like a great Shakespearean tragedy and the waterworks begin.
I’m still fuming from the pee and I pull his whiny self up and we walk over to the benches to drop off our things.
I tell him he should’ve held his pee in or told me he needed to use the potty. And as always, I feel like it’s in one ear and out the other ear with T.
To a stranger – even to family and friends – it is hard to imagine that our handsome, sweet and normal looking child has an invisible disability.
Because of this, his behaviour often illicits misunderstanding from others – like he is being a bad kid, intentionally willful, or being “weird.”
I know how other feels or think, because the hubby and I sometimes feel and think these exact same things about him.
T has a prognosis of at-risk fetal alcohol syndrome, an invisible disability caused by prenatal exposure to alcohol. His birth mother admitted to drinking for the first three months of pregnancy.
T is too young to diagnose. He has made great gains thanks to early intervention services and he seems to hit most developmental milestones and so our developmental pediatrician wants to wait before giving him a formal assessment.
Recently, T received a diagnosis of ADHD and as such, we started him on medication. Four weeks in, it is still too early to tell what the long term effect of the medication will be.
T’s behaviour often elicits strong reaction from others. He struggles with hyperactivity, focus and emotional regulation.
He is the kid that will never stop moving and sit down to focus on a task. This creates challenges with learning at school.
He is the kid that gets angry, upset and frustrated easily. When he gets emotionally charged, it results in meltdowns, sometimes hitting his parents, and some times he would even push a chair down or start throwing toys at us.
Thankfully, through behaviour therapy services, we have developed and implemented wonderful strategies that have made a big difference. And his outbursts are now often short lived.
I think a lot about how the world will react to T. I guarantee that most people will not be as understanding as the hubby and I.
The darkest moment of parenting T to date came in Spring 2019, when we were informed by the T’s Montessori that he was not invited back to the fall school year, because a parent had complained to the owner about T’s behaviour.
Can you imagine how that felt? To have a stranger, who didn’t have the guts to talk about this to our face, play judge, jury and executioner to a 4-year-old.
We are blessed to currently have a very awesome school, principal and teacher and support services for T. Being kicked out of Montessori ended up being a great blessing!
But the hubby and I are not complacent and are prepared – while staying cautiously optimistic – for the battles ahead. Battles with teachers and administrators who don’t want to work with us – because these people will come. Other parents and kids who don’t understand his condition.
What hurts me most is how this will affect T’s self concept and self esteem, because he is a perceptive child.
Kids with special needs – especially those with an invisible disability – often have difficulties making friends. This part kills my heart the most when I think about it.
And this is why I blog. To spread awareness.
The wonderful UK-based blogger and author Andi Webb at Diary of a Gay Dad nominated me for a Sunshine Blogger Award – thank you, Andi!
And one of the questions he asked me, as part of the award process, is “Why do I blog?”
It’s quite simple – to spread awareness.
T’s brain-based disorder is never going away, as much as I pray for it to go away.
But I am not going to let that get in the way of a positive and quality life for T.
There is no point focusing on things that I can’t change but rather to invest my energy on things that I can affect:
2. Focusing on positive parenting strategies to maximize his self concept and self esteem.
3. Educating others about an often-misunderstood condition so that they can see beyond the behaviors and see the wonderful, bright, funny and caring boy that we know T to be.
There are so many wonderful advocates out there, some of whom I met recently through my still new blogging journey, such as Robyn at the wonderful Autism in Our Nest blog and also the equally inspiring Our Sacred Breath and Love That Max.
Everyone is doing their part to make this world filled with a little bit more sunshine.
T fills our lives with sunshine – and yes, lots of stormy days too – and I want to share his ray of light for the entire world to see just how incredibly amazing children like T can be.
One important life lesson T continues to teach me is to not let the hardship wear me down nor to become cynical.
And to realize that there are many people who do understand, who do empathize and who will help you spread your message and awareness.
On that same afternoon that T peed outside the pool, we did end up going into the pool after I washed him and his pants off in the shower first.
While we were in the pool, the elderly woman who stood behind us in line, swam up to me.
“I just wanted you to know that I’m sorry I didn’t help earlier when your son fell,” she said. “I just didn’t want to get close, because of COVID. I just wanted you to know because I felt very bad.”
I smiled at her and said thanks. We both looked at T who was jumping off the pool’s edge into the water. “I think he’ll be ok,” I said with a smile and thanked her for her kindness.
And he will be ok. I just need to keep reminding myself of that.
During yesterday’s day camp pickup, the staff told me that T was talking to them and the kids about Madonna and how he wants our family to move to London to live with her.
Being a big Madge fan, moments like this are like a ray of light and remind me like a prayer that I’m doing borderline ok as a parent.
All jokes aside, the hubby and I are so thankful day camps are open again.
We certainly had anxieties and deeply considered the risks. We know that every family will make a decision – a very hard one – that’s best for them.
For us, it’s ultimately about T’s wellbeing – and ours too, if I can be completely frank – to be in a social and learning environment.
Our belief is certainly reinforced by reputable organizations like Sick Kids’ Hospital and the American Academy of Pediatrics, which both said that a return to school is important for the overall wellbeing and development of kids.
We are only four days into return to day camp and I can say with full sincerity that this is the most normal that I have felt in four months since lockdown began.
Work is still relentless but what a breath of fresh air to be able to have a singular focus – to not be running a call with 25 people and having T have a tantrum in the background or to take a proper break instead of using breaks to homeschool.
We are also blessed that T has a fantastic day camp, the same place he goes to for his after school program during the school year.
We were forthcoming about his prognosis of at-risk FASD and they were able to secure grant funding to have a dedicated one-on-one support to work with him during the school year.
This summer, only four kids have registered in his age group. Most parents are still freaked out about COVID-19. On an entirely selfish note, this works out to T’s benefit, because the four kids have more attention and care from the two fantastic staff members.
Having T start medication for ADHD has also made a difference. I notice that T is more verbally inquisitive and can carry a conversation and thought for a longer time, like about Madonna!
It is too early to tell what the long term effect of medication will be on T when he starts full time senior kindergarten in an integrated classroom. But there is reason to be optimistic and hopeful. There always is.
During today’s pickup, the staff member told me that T told one of the the girls that he was going to kill her when they had a misunderstanding. It’s an ongoing bad habit of his when he gets angry and we are working through it.
But the staff said half an hour later, T asked the same girl if they could play together in the dramatic play area. And they ended up throwing and having a pretend birthday party together.
This is huge for T to ask and to verbalize his thoughts and a request like this. The staff member certainly thought so.
T is a work in progress and will always be one. But this is why I am so thankful day camps are back. Because the best way for him to learn these skills is through direct interaction with other kids.
My heartfelt thanks to the wonderful day camp staff who’ve carefully and thoughtfully adapted their services for these uncertain times.
In the words of the great Madge, it’s almost like we’re on a holiday from the pandemic. And yes, it can be, it can be so nice!
The last four months of lockdown – working, schooling, parenting – have been so hard but also creatively and emotionally rewarding. But the hubby and I are beyond burned out.
So we took T for a recharge in nature with a short but sweet family roadtrip – three hours from home – to scenic Parry Sound, Ontario.
We arrived Friday evening and spent Saturday at beautiful Killbear Provincial Park, one of my fave places in the world.
The hubby and I have camped here four previous times, two with T when he was a toddler. This time, we stayed at an inn, because of the pandemic.
We were blessed with perfect weather; sunny and breezy, warm but not scorching.
We stayed longer than planned, seven hours, going in and out of the water six times and skipping lunch altogether.
Swimming in the fresh lake water was so rejuvenating. It was comfortably cool and energizing.
From the two other times the hubby and I came here before we adopted T, we always looked forward to him getting old enough to take him to Harold’s Point for cliff jumping.
Our fearless little boy jumped right off the 10+ foot ledge into the water. Again and again until we told him we had to stop because we were tired.
We spent the late afternoon sitting on the rocky shore, in our own spot well distanced from others, eating snacks and lost in our gaze at the gorgeous Georgian Bay all around us.
Seeing T’s content, happy, laughing, smiling face was all the refueling I needed to get through the upcoming few weeks. He really needed this weekend. And you know what, so did we!
An hour after we got back to the hotel on Saturday night, the skies thundered and with a huge crack of lightning, the heavens poured down onto the ground.
“Good thing we’re not camping!” I told the hubby with a laugh and climbed into our soft comfy bed, while T played on his tablet.
Killbear is a tradition we want to keep going every summer. I look forward to many more visits and building more memories in the years to come.
When we started lockdown homeschooling, the blank page of a day gave me great anxiety. I’ve since learned it’s okay to leave pockets of time during the day as unstructured time for five-year-old T to be bored.
Research has shown that boredom supports a child’s healthy development, as it helps them build creativity, resilience, and independence.
I think back to my own childhood. My parents couldn’t afford expensive summer camps, so I got stuck at home while they worked and they warned me not to let others know they left their nine-year-old at home alone.
I have fond memories of those summers of boredom. I spent hours biking around the neighbourhood lost in a fantasy world. It was also when I discovered a love for creative writing and churned out many fan and original fiction.
T is a lucky child in that he has so many resources to help him fill his day. He has TV, online games and a wealth of toys.
I think back with amusement to the first week of homeschool schedule I created in March. Every minute was programmed. Activities were chunked into 15 minute segments. I remember after the first day I had to rethink my approach because I knew I was headed towards a burnout and meltdown.
Keeping up the learning this summer is important to us because I am worried about the summer brain drain. But we are using a looser schedule.
So long as we get 15 minutes each of reading, math and handwriting skills as well as ample outdoor exercise and swimming time in there, then we let T program the rest of the time.
We also try to make sure he doesn’t sit in front of the tablet playing games and watching videos too much, because I do want to limit the screentime for the sake of his emotional regulation and the effect on his eyes.
I take a deep breath when I see him wandering around the house, looking desperately bored and sad, because I know that eventually he will pick up one of his toys and start running around the house. Or he will go visit his fur siblings to torment them.
Some of my favourite parenting moments are the simplest ones. When I am working, cleaning or cooking – or when the hubby is gardening outside – and I notice T to the side, mumbling to himself and his imaginary friends. I eavesdrop on the conversations and his make believe world.
I know that it is during these moments that he is building his imagination, self sufficiency, ability to cope with being bored, and in the long run, his learning.
As T gets older, his schedule will be more programmed with extra curricular activities, like swimming lessons. I think these are equally important for a child to help them build skills and discipline – so long as it’s balanced with plenty of down time too.
But for now, I’m going to hang on to this moment of time, because I know it is fleeting, as boring as these wonderful moments may be.
On a scorching Friday morning, T and I went for a hike in our city’s beautiful Botanical Garden.
We explored nature, had a picnic of apple juice and Goldfish crackers in the shade of a willow tree, and he saw and learned about cactus plants. Oh, and he spotted a beaver up close too.
This was the first week of T’s summer break. It was also my first week of vacation all year. While it was not as work free as I had looked forward to when lockdown began in March, there were pockets of time to relax and to spend time with T.
We took a break from homeschool this week and let T just relax with tablet games. We all needed a respite from the routine and schedule for our collective mental health and wellbeing.
But we plan to keep learning happening all summer long to avoid the summer slide that often happens. More so than ever, it is important to keep T on track.
We plan to keep learning more relaxed, play based, hands on, and interactive this summer.
Reading regularly is a simple way to grow his literacy skills. Although the online resources his teacher had provided are expired, there are plenty of other online resources, like Scholastic and read-aloud videos on YouTube. Our library also now provides curbside pickup.
Practicing handwriting is something T needs to work on. His teacher gave us lots of worksheets that we made duplicate copies of. We’ll keep working on writing letters and numbers this summer.
Self directed discovery is something I want to tap into. What is T curious about? Like the other night, he was asking me if his brain slept on a bed too. I thought it was an odd question. But I made a note the next day we would learn about how the brain worked. It’s a good sign that T is genuinely curious and so I want to build on those interests.
Making stuff is fun and builds creativity and skills, whether it’s building a tower or baking a cake. Also very therapeutic.
Outdoor time and getting physical activity are so important to keeping him regulated and healthy. I’m thankful we have outdoor pools and nature trails within our reach.
Building social skills is something I think about a lot with T. I am thankful his day camp is open. He will be going back for two weeks in July and August. It will give him needed time away from home and to be around other kids and adults again. I can’t wait to get personal and quiet time too!
We’ve also started T on medication for ADHD.
It’s only been a week since we started the medication so it’s too early to tell what the long term benefits – or detriment, Lord help us – are.
Putting T on medication was something I struggled with but I am going into this with an open mind, for the sake of his long term outlook and ability to learn and to get along with others.
Most importantly, summer is about fun!
As a child, summer break always felt long.
Life has not fallen into a routine and rhythm. Each new grade coming up is filled with mystery.
Life does not yet feel predictable and time doesn’t seem to fly by in the blink of the eye.
So for sure we want to keep the learning going. But we also want to have fun. Especially this year, we want to have fun. And we have a few surprises planned for T.
I wish all of you a summer filled with fun, learning, wonder and time well spent with loved ones – and yourself!
My Life With T 