My Life With T

Taking Our 5 Year Old for a COVID Test

We had quite the unexpected start to our week when T was sent home midday Monday from school.

He was sneezing and had a runny nose. He also told his teacher he had a fever. He didn’t and doesn’t have a fever – it’s his default word for everything – but because of his cold symptoms, they asked us to pick him up.

Not only that, but we also had to keep T home until he completed a COVID test and we confirmed a negative result.

So the hubby and I rearranged our work day and the entire family went for the COVID test.

The lineup at the hospital was long when we arrived late afternoon.

There are two lines: a screening line where they take your personal information and a test line where you get the QTip up your nose.

Thankfully, we got to cut to the front of the screening line because of T.

The line to wait for the nose swab took an hour. T was glued to the hubby’s phone. We had to change his mask because of how snotty it was.

I was optimistic T was going to be fine given he was in great spirit and didn’t have a fever.

When it was finally our turn, I joked to myself about telling the staff to shove that QTip up T’s nose to teach him a lesson about so carelessly using the word fever. But I was nice.

I was up first. It was quite quick, lasted five seconds. It wasn’t painful but it was certainly uncomfortable. It felt like someone jabbed a metal wire up my nose.

My eyes watered up and although I was not in pain, I had tears streaming down my face.

I tried to tell T that it was not painful at all but I was not very convincing so I left and waited outside. A minute later, I saw T walking out with tears streaming down his eyes.

I bet he learned an important lesson to never use the F word (fever) so casually again!

And so, it was a return to homeschooling – while working – again this week.

The hubby and I were so not mentally prepared for it, so this week felt like a chaotic mess.

Thankfully, we had resources and ideas leftover from our homeschooling journey in the Spring, including those from his teachers last year, that I drew from.

We did some math activities.

And a scavenger hunt, using a card game called Ukloo, gifted from a wonderful teacher friend, that helped us practice reading and recognizing sight words.

As well as outdoor time (in the backyard only), letter tracing, roleplay games, and bedtime reading.

T’s amazing child and youth worker also reached out to us and she did 30-minute virtual lessons with T on Wednesday and Thursday.

Thanks to her, we discovered that T is now drawing pictures in class. He drew a wonderful picture of a dinosaur.

And our two cats Kyrie and Lanaya.

I felt the return of being so scattered with juggling work and T – and I didn’t do a good job of managing my stress level at all this week – and the parental guilt of feeling like we were not doing enough for T.

It certainly made it clear to me that the hubby and I are screwed again if we were to have a second lockdown this fall.

I just had to keep reminding myself of two things: 1) missing a week of school in the grand scheme is not the end of the world, 2) it’s important to respect and appreciate the protocols that schools have in place to keep everyone safe.

T had quite a few hard moments to deal with this week. When routines go out the window, he gets easily emotionally disregulated. In fairness, who could blame him for not wanting to be home and wanting to be in school. But it was also quite awesome to see the growth in him between now compared to just a few months ago.

So there’s always a silver lining!

Oh and in case you were wondering, the results were negative!

I’ve never hit the refresh button on a web page as much as I have this past week. T was driving me nuts at home, to be completely frank!

We received them this morning.

I must’ve woken up the entire neighbourhood when I screamed “Negative!” at the top of my lungs.

It was not a surprise as it’s exactly what we expected. He was fine all week. But nonetheless, it was a big relief and we felt grateful to have it confirmed.

We told the teachers and his daycare we were going to keep T home for today – and possibly on Friday – until his cold symptoms go away.

The last thing we want is to get the other kids in his class sick and then the school has to shut down.

Cuz if that happens, Lord help us all, I may jam that QTip up into my brain myself.

Goodbye Summer, Hello Autumn

It’s the first Fall weekend and we enjoyed a Saturday afternoon hike at Rouge Urban National Park, a wonderful oasis nearby our home.

We were blessed with a last blast of summer weather, so we all wore t-shirts and shorts with the added benefit of no bugs or sweltering heat.

It seems like everyone in town wanted to soak up what’s left of summer. The parking lot was packed and we parked on a side ditch with the other latecomers.

We enjoyed a short hike that took us up a hill and into a forest. It was nice seeing the yellows, reds and oranges starting to emerge.

There were a lot of people out, so we had our masks on during the moments we passed by large groups and families.

It was nice seeing others making the most of these ongoing pandemic conditions while keeping safe.

We spent the last part of our visit by the small pebbled river. T dug up rocks and hurled them in the water. He finds this very calming.

We rewarded ourselves afterwards – not that it was a strenuous hike – with sweet cold slushees from the gas station on our way home.

During bedtime this week, we read the book “Goodbye Summer, Hello Autumn,” wonderfully told and beautifully illustrated by Kenard Pak. It’s an appropriate book for the times.

Hello autumn, indeed!

Playing With the Older Kids

A pair of older kids have formed an unlikely group for T to play with after school.

Four weeks ago, our end of day routine became one hour of play at the playground next to his day camp, which is now his after school program.

It’s a nice playground and even big enough for me to comfortably play in with T too.

The first week of school is now in the history books. It is so nice to be able to pick T up right after I log off work at 5.

I used to get home from work after 6 and it was the hubby who did pick up. But working from home has changed our routines.

Picking T up and playing with him before dinner means that T gets to wind down at home afterwards and then we start his bedtime routine early. It’s been so great and hope it stays this way.

T and I met the older kids A & D four weeks ago.

After camp pickup, T wanted to stay and play in the playground.

A and D, 12 and 10, came to play and T did his usual circling them trying to get their attention. And they were nice enough to let him play tag with them.

I liked that they played hard and didn’t pretend to be slow like me. They gave T a real workout. T started crying at one point cuz he said “I don’t like being It!”

Then T got thirsty and I told him there was a water bottle in the car. I was hoping to use that as an excuse to head home. But T wanted to come back and play and I didn’t have the heart to stop the nice moment he was having.

When I came back with T, the two kids were waiting and asked if I had water bottles for them. I was like, “No and you shouldn’t take water bottles from strangers!”

“How old are you?” A asked.

“I’m gonna be 40 next year.”

“You’re the same age as my mom,” A said. Then started telling me he’s getting braces and then showed me his teeth. Then he asked me if I ever got into fights with kids at my age and if I took karate to defend myself.

I’m smiling uncomfortably and awkwardly and thinking to myself, “Jesus Christ, just play with my kid. I don’t need to know your life story!”

All jokes aside, what two nice kids to spend their time playing with a small kid. T came home with his hair sweaty and messy, his face flushed pink and a content smile. He even finished two servings of his dinner!

Since that first meeting, we see them often at the playground.

They like to play tag and this game called grounders, which I have no idea how to play.

It’s very interesting to see the dynamics and the personalities at play.

A & D, and a few other kids who come and go, often get very frustrated with T because T is not good at reciprocating.

T always asks them to chase him. But when they tag him, T would either say that they didn’t tag him, that they missed or that they cheated.

A would get frustrated and come to me to vent. “This is so stupid. He is being very annoying,” he’d tell me. D was often more understanding.

Sometimes, T would then stop chasing them and go off into his own world.

I try not to interfere because it’s important for T to learn social interactions on his own. But I would yell from time to time to give T a gentle reminder to go chase the kids.

“Show them how fast and strong you are,” I’d say with a little encouragement.

It’s also interesting to see how the dynamics change when other kids come around. One time a group of girls, whom I assumed were their classmates, came to play. Then T suddenly became invisible to A & D. Ditto when a group of even older kids came.

Such is life and the societal pecking order for a little 5 year old!

At the end of this recent school week, D was cycling by the after school program when I went to pick up T. He waited for T to come out of the school.

D told me that he was doing school virtually and I got the sense that he felt lonely – being an only child. And yes, I know these things because these kids tell me their life story. I don’t ask!

T and D played tag and chase for a good hour.

Four weeks since they started playing together, I see more willingness from T – with a healthy dose of whining – to do the chasing too and not just to be chased.

And for a kid who was half D’s age, he gave the older kid a good run for his money!

Then T asked me if D could come to our house to play. Then I told him that I don’t think D’s parents would like me doing that without asking them!

Note: The older anonymous child pictured with T at the top is not related to this post. He’s the son of a good friend from a recent get together. This photo was used for illustration purposes only. 🙂

Working with Teachers to Maximize A Special Needs Child’s Success

The first day of senior kindergarten is in the can and we are looking ahead to the new school year with cautious optimism.

T got a fresh haircut from the hubby last night, went to bed early, got 10.5 hours sleep and woke up rather pleasant.

We are thankful to be starting in a very good place this year. He has a supportive principal who advocated for and hired a child and youth worker who’ll work one-on-one with T in the class. The school, including his amazing teacher from last year, also gets and supports his needs.

The drop off today was good. We met his teacher and the child and youth worker – who spoke us with on the phone last Friday. His principal was also at the greeting line.

Everyone had masks on and class start dates are being staggered throughout this week. I feel he is in good and safe hands.

Teachers and educators play an important role in influencing a child’s growth in and enjoyment of school.

T’s very first day of daycare when he was still 1 year old. Time flies!

T has struggled with hyperactivity and focus since his preschool days and while he’s made gains, it’s an area that continues to present challenges.

Educators are important allies in a child’s development.

Generally, I’d say – and based on anecdotal evidence from other parents on virtual forums – FASD is not a condition many teachers know about nor understand.

As such, parents play an important role in working with educators to raise awareness to maximize the child and the educator’s success in the classroom.

I’m by no means an expert in parent-teacher relations, as I’m so new at this, but here are a few lessons I’ve learned the last three years.

Teachers want to do their best to support your child – I don’t think any professional wants to do a bad job. It’s tempting for me to go into a new relationship with boxing gloves on, ready to go to war for T. But I try to start with a blank slate, an open mind, and cautious optimism.

Take the teacher’s lead… – During our call with T’s teachers on Friday, I listened to their thoughts and answered their questions. I resisted the urge to dump all of this advice on them. No one likes unsolicited advice nor know-it-alls who think they can do their job. I will see how the first few weeks go and I want the teachers to form their own opinions of T – strengths and weaknesses – and then regroup to see how it’s going and strategize together to address issues.

… But be upfront about the challenges … – Since our negative experience with T’s preschool Montessori, we’ve been upfront with teachers and schools about T’s prognosis of at-risk FASD. It gives them an idea of what to expect and an understanding of the challenges they may face.

… Be open to critical feedback – We’ve always told teachers they can be honest with us and not worry about sugarcoating things nor offending us. We can and we need to take the honest feedback.

… And provide resources and supports when required – Most special needs parents – us included! – will likely tell you they have binders full of articles and resources at the ready to share. It’s good to be prepared should teachers ask questions. For example, I find this video below by FASD expert Dan Dubovsky so helpful to share with educators to give them an understanding about working with students with FASD.

Know When to Advocate and Push Back … – I’m all about working cooperatively and respectfully with educators. But I realize there are situations where parents need to stand up and speak their mind, to question decisions, and to demand a different approach to supporting their special needs child. This may include requesting an IEP or related accommodations. This is not the first step I’d like to take in any relationship but I know this is always a possibility. But let’s hope not!

… and Draw on Community Supports – We are very lucky to have a superb team of community supports for T, including a special needs resource consultant that works with him in his after school program and a behaviour therapist who’s made herself available to provide recommendations to T’s teachers and us. And we’ve been so lucky to have a principal and teacher team who’ve been open and receptive to getting this feedback.

It’s a true collaboration – A parent knows their child best and a teacher knows their classroom best. Working together, I think, is the best way to maximize the success of the child – special needs or not. I try to be mindful of this when I’m navigating any relationship, whether with an educator or not. Know when to lead and when to step back. And hope the personalities work well together!

It’s tradition for me to take the first day of school off work to be on standby for issues.

Other than doing a bit of work in the morning after drop off, I took it fairly easy today.

At the end of the school day, I drove by the school to make sure T got on the bus to his after school program ok. Buses are always wonky on the first day, so we’re better safe than sorry.

I ran into his child youth worker, who said that he had a good first day. I felt great hearing that.

Then I told her I was going to hide in the distance so he doesn’t see me.

I stood behind a school fence and watched him walk out, with his fall jacket and backpack on, following his child and youth worker onto a bus.

It still blows my mind sometimes thinking that T has his own little life during the day.

When he boarded the bus, I got into the car and drove home to enjoy what’s left of my day off.

At a red light, I watched an elderly woman walk across the street with a young boy in her hands and I smiled and waved at them.

Happy Meals and Summer Memories

Summer fly, winters walk. T got an extra week of vacation this year but it’s time to head back to school this week.

This has been a strange challenging summer. I’m thankful my family stayed safe and got to make the most of it and explored the beauty of Ontario.

I know this was a privilege and so I feel extra thankful for these blessings!

I’ll hold dear the memories of our hikes, swims, picnics and long drives and I look forward to more adventures and a return to normal in the summers to come.

Here are just a few moments I’m smiling about as I look back at photos from the last two months.

The free outdoor City-run pool was such a blessing. T and I were there 3-4 times a week after work and day camp. It was a joy seeing his confidence in the water grow.

The many Minion toys pictured above – and that’s not all of them – were from the Happy Meals we had from McDonald’s Drive Thru after our swims.

We kept our distance from family and friends, except for three occasions this summer – doing socially distant and outdoor activities, including a day trip on a pontoon in Port Perry.

It was so nice to catch up with people and you almost forget what it’s like to interact with humans in real life until you do so again!

Our 9-day family roadtrip to Thunder Bay and back and our weekend trips to Killbear in July and in early September were much-needed recharge in nature.

It made me heart soar seeing T feel truly free in the wild and to see his spirited embrace of our hikes and swims in the wild.

It was a real joy when playgrounds reopened.

The countless hours we spent in the playground after day camp or during weekends created a wonderful mosaic of memories for T and I.

While it tugs at my heart to see T struggle with social interaction at times, it also makes me beam when I see his determined spirit to play with others and his successful moments at doing so.

Day camp reopened in July. What a relief for all of us to be able to have T some much needed social interaction with other kids and for the hubby and I to have some singular focus on our work.

The day camp staff were amazing and so understanding in working with T.

This was also the summer we made the decision to try medication for ADHD. The results have been mostly positive but with some continued challenges.

And it’s also the small and simple moments that add up – like our countless walks as a family around the block, to building forts, and for me, cooking homemade meals like chicken masala (above) to help pass the time.

Strangely enough, I think when I look back at this summer one day, it’ll be curious to see how much the word pandemic permeates into my viewpoint.

COVID-19 certainly affected our day-to-day life. But if I could sum up this summer in a few words, it would be: family, adventure, nature, being present, gratitude and resiliency.

I hope you all had a great summer and best wishes and continued safety for this fall!

Tiny Homes, Big Dreams

Less is more is an adage I believe when thinking about home life and our five-year-old T’s future adult life.

I found this story of father and son co-living through a tiny home and this story of a father and his 15-year-old creating a shipping container home to be so charming.

For anyone not familiar with the tiny home movement, it’s exactly as the name suggests, creating tiny but livable spaces and sometimes through repurposing shipping containers.

A quick search on Google reveals countless examples of incredible and creative possibilities.

The hubby and I are working towards giving T the skills to be able to live on his own one day. That is every parent’s desire and expectation.

But we are also mindful that there may be a future where T would need to be supported by us in his adult life.

The hubby and I live in a suburban area near a big city. This is the home we plan to grow old in and to watch T grow up into the wonderful young man we know he’ll become.

We talk a lot about retiring in the East Coast, where the hubby grew up. Away from the hustle and pace of city life and more out in nature.

Out East, homes and land are cheaper and you get more acreage for your investment.

It is during our moments of dreaming that we often imagine the idea of building a tiny home within our lot for T, should he live with us.

The idea of a tiny home or a shipping container home is certainly charming.

More so the idea of the hubby, T and I turning it into a family project. This certainly taps into my hubby’s home renovation flights of fancy.

I realize I’m making a generalization, but I often perceive Western culture to expect kids and their parents to live apart when the kid ages.

Whereas in Asian culture, it’s more common for multi-generations of families to live together.

So this is certainly a possibility for us one day.

Whatever happens in the future, we are taking it one day at a time and look forward with optimism.

But it certainly is nice to get lost in a dream as we think about all the wonderful possibilities ahead of us.

Top Image: From Wikipedia Commons and used under the Creative Commons license.

Wearing Red Shoes to Honour FASD Awareness Day on September 9

T is wearing red shoes to day camp today in honour of FASD Awareness Day.

Commemorated annually on September 9, to symbolize the ninth month of pregnancy, this day serves to raise awareness about Fetal Alcohol Spectrum Disorder, specifically about the plights of drinking during pregnancy and about the struggles of individuals with FASD.

Wearing red shoes on this day was an idea began by RJ Formanek, an individual with FASD, to help start conversations about FASD.

Our five-year-old has a prognosis of at-risk FASD, because his birth mother has stated that she drank during the first three months of pregnancy, when she was unaware that she was pregnant.

FASD is a spectrum and the effect on each individual will differ.

For T, and for us as his parents, the biggest challenge to date has been around behaviour.

He struggles with hyperactivity, difficulty with focusing on a task, emotional regulation and impulsivity.

These are foundational skills that can influence how he experiences the world – such as school and friendships in the immediate future.

FASD is a brain-based injury and is a little understood condition. It is an invisible disability and it often leads to people thinking children like T are badly behaved – when in fact, the behaviours are symptoms of his condition.

One of the most painful moments in our parenting journey to date was when T’s Montesorri pre-school program booted him out after a parent complained anonymously – cowardly, if you ask me – to the owners about T.

While FASD is a lifetime condition, it does not have to be a life sentence.

With the right supports, individuals with FASD can have positive lives and thrive.

I will say this loud and proud, our T is bright, caring, tenacious, funny, curious, creative, and a storyteller.

He has benefited tremendously from early intervention services – such as speech therapy (the kid won’t shut up these days), occupational therapy and behaviour therapy.

One of the most important lessons I’ve learned in this humbling parenting journey is that you don’t need to lower your expectations but rather you need to adjust your expectations and to accommodate your child’s needs to maximize their success.

T does not have an FASD diagnosis, because his developmental pediatrician wants to wait until he’s older because he has been doing well at his check ins.

He did recently get a diagnosis of ADHD and we started him on medication this summer.

With that said, the hubby and I are operating under the worst case scenario – and assuming he has this diagnosis based on exhibited behaviors – as it’s allowing us to give him the scaffolding he needs at home and at school.

Advocacy, such as FASD Awareness Day, are so important to helping spread the word to reduce stigma.

In Canada, it is estimated that 4% of the population are affected by FASD. That’s over 1.5 million people. And yet, so little awareness and understanding about this condition exist.

FASD has long held a negative stigma. Labels are so wrong, but it is how society tends to operate and function – myself included until parenting changed my view of what special needs means.

T doesn’t know about his condition. But I know and I can tell that he is aware of his actions and their effect. He gets upset, for instance, when a kid doesn’t want to play with him at the park because of his rowdy behaviour.

Talking about his challenges, whether as a diagnosis or in the context of pre-natal alcohol exposure, will be a conversation for when he is older. It will be difficult.

But honesty is the best policy. T is a bright and determined kid. I am hopeful that he will embrace it and channel it into something positive and to build his resilience.

I’ve written quite openly about the highs and lows of parenting a child with great potential and challenging needs.

It is the most rewarding thing I have ever done in my life – and the most challenging thing.

T pushes the hubby and I like no other thing in our lives have ever done before and on some days, I really just want to scream at how hard raising this kid is.

But it all comes back to us in spades – through love, exhilaration and joy.

And that is the message I want to share on FASD Awareness Day: there is so much love in and from children like T. That is what I choose to focus on as we look and move forward with cautious optimism and pragmatic positivity.

Summer on ADHD Medication: The Good and The Ugly

Our five-year-old T started medication for ADHD in July. It has yielded positive and challenging results so far.

Starting T on medication was a very hard decision. But we made this decision because we knew the potential rewards were worth trying and worst case scenario, we could stop it.

We started him in early July. He was home with us for two weeks – transitioning between the end of school and the start of day camp.

Aside from a week away on our family roadtrip in early August, T was in day camp for six weeks.

This is the same before and after school and staff team that he’s been with from last September to March before lockdown. This summer, he was in a class with only 4 other kids and 2 teachers.

We had a call with his day camp teachers last Friday as an end of summer check in about T.

They said that they have seen a growth in T since March.

He is more communicative and expresses his desire to play with other kids. He is able to sit down and enjoy lunch with them.

They said T likes to share stories about what he did on the weekend with his Papa and Daddy. It’s a joy for staff to see him come out of his shell.

They said that T likes to be a comedian and likes to see other people laugh.

On the flip side, behaviour continues to be a big challenge.

They said while he can focus a little more, they don’t see a big change in this area. Sitting down to complete an activity like art or writing is not something T can do.

Social behaviour and emotional regulation are also a struggle.

When T doesn’t get his way, he screams and gets upset. He sometimes grabs the kids. When T has outbursts, he would hit other kids and teachers.

As a result of this behaviour, the kids sometimes get scared of him and don’t want to play with him and he would then play by himself.

They said that T is not grasping the idea that kids sometimes need their own space.

They said that T likes to copy and mimic the other kids and the kids sometimes get annoyed at this, but T doesn’t understand that they don’t like it and he keeps doing it.

The staff are great to work with. They know how to use behavioural strategies to redirect T. They often ask him to go to his cubby and to calm down.

Staff said T is able to calm himself down quickly but often comes back and repeats the same behaviour.

Staff noted that T doesn’t like being in trouble. He feels remorseful. He is aware. They see this as a positive growth and maturity.

I am appreciative for the honest feedback. I like people who don’t sugarcoat things, as it gives us a clear picture of his growth and challenges.

While it was a bit disheartening to hear the problem areas, I have to remind myself of a few things: 1) T was only in camp for six weeks, 2) T was outside of a school environment for four months and 3) the teachers said they see growth and gains too.

It’s funny to think – and I know I’m not the only parent who feels this – that medication is not the be-all and end-all. It’s not going to fix our T overnight.

Like many kids with the same prognosis, T’s struggle with hyperactivity, sitting to complete a task, emotional regulation, and understanding social cues will present him with challenges moving forward.

I feel both apprehensive and hopeful for what the new school year will bring, but I am not naive enough to think that there will be no struggles. There will be many many of them.

We’ve also had to adjust his medication dosage – in consultation with his developmental pediatrician – because he was getting intense moments of rage. Removing the third dosage in the late afternoon has helped.

The hubby and I have decided to wait and see how T does in school this Fall to get a proper picture of the efficacy of medication.

We are well aware that medication is a trial and error journey.

For now, we see many positives and reasons to feel hopeful and to stay the course. As for the continued challenges, we will not let them knock us or T down.

We’re gonna and we gotta keep looking and moving forward. There’s no other choice.

Nature and the Passage of Time

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.

We were at Killbear earlier this summer and T loves it here – we all do – so we went back.

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.

When Kids Lift Each Other Up

At his core, our five-year-old T is a caring kid.

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.

Visiting Our Old Home and Playground

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).

Discussing and Normalizing Death, Adoption and Difficult Topics with Kids

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!”

What My Cousin and Downs Syndrome Taught Me About Parenting

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!

Finding a Younger Brother for T

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.

We’re not being morbid. We live life with pragmatic positive thinking and this means being prepared for worst case scenarios.

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.

“Turn to Stone, Lose My Faith, I’ll Be Gone Before It Happens.”

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.

Dream away your life

Someone else’s dream

Nothing equals nothing.

Why should I feel sad

For what I never had

Nothing equals nothing.

Turn to stone

Lose my faith

I’ll be gone

Before it happens.

Playgrounds Are Back!

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.

Meeting Mr. Alex

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.

Taking and Embracing the Detours on Life’s Journey

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.

I reflected on this during the long drives throughout our recent week-long roadtrip to explore Northern Ontario – visiting beautiful places like Thunder Bay and Killarney.

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 taking a lunch and playground stop in small town White River, which we learned was the birth place of the real-life Winnie the Pooh.

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.

When I first received T’s prognosis of at-risk fetal alcohol spectrum disorder, I felt like we were headed towards an inevitable destiny.

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!

Swimming in a Secluded Spot at Painting-Like Killarney

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.

Finding the Roaring Spirit of Adventure in Thunder Bay

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.

What an inspiring story. As I previously posted, every child needs and deserves a hero, like the wonderful Terry Fox.

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.

T could’ve thrown every rock into that water.

I hope to come back to Sleeping Giant when T is older so we can do the difficult 22 km Kabeyun Trail and enjoy the stunning view from atop the giant.

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 adventure continues…