Like a child hypnotized by the Pied Piper, so was T to the melodic chime of an ice cream truck.
On Thursday afternoon after daycare pickup, it was sunny and beautiful, so T and I hung out in the playground before heading home.
The melody of an ice cream truck appeared out of nowhere. T asked for a cone and I reminded him we don’t have ice cream on school nights.
The melody triggered memories of when T did a happy dance in our old neighbourhood whenever the truck appeared and he’d skip towards the lineup, in rhythm to the melody.
I then remembered this exact moment below when he had his very first ice cream cone, at age 3 on a mild late April weekend. The look on his face as he had his first lick ever was so precious.
As T played, I thought about how our brains retain and recall memories; what we can keep and the many moments that are forever lost over time.
A 2019 study reinforces the hippocampus in the brain is the hub that stores memories and suggests that it works with the neocortex to fill in the details of a memory.
Yah, it sounds academic. For me, this reminds me that we remember the most positive or negative moments – because our reactions are so visceral.
So how do focus on moving forward with the positive experiences, while learning from the less positive ones to avoid repeating them?
As I thought about this, T sat on the swings, kicking his feet up and pulling them back, building a steady momentum until he was quite high in the air.
It was just last summer when he tried valiantly to do this but gave up in frustration. This was his first time doing this on his own in front of me.
We cheered together and I knew this was gonna be a moment I’ll recall vividly one day.
When we got home, I read his teacher’s Communications Log. It was an up and down day, but there was a wonderful comment: he moved up two reading levels to Level 14!
It was just a month ago that she moved him up. He was now one level shy of reaching Grade 1 year-end expectations.
The hubby and I made a big proud freaking deal out of it. We then broke our no ice cream on a school night rule and gave T a small scoop after he finished his homework.
“What does heaven mean?” T recently asked me during bedtime.
I believe in God but am apprehensive about organized religion.
I had a hurtful experience with church in my teen years but I still believe all paths lead to God or however one calls them.
I believe that those who politicize or weaponize religion cause the greatest evils in our world.
I will encourage T to keep an open mind about religion as he grows up and to learn about all religions. He can decide what works for him.
But in the meantime, I had this pressing question from my inquisitive 7 year old – and my mind was half passed out.
I gave what I felt was a balanced answer: “Some people believe that heaven is a place you go to after you die.”
He sat in silence for a few seconds and then replied in typical T style, “What the hell did you just say?”
I had to stifle my laughter because I didn’t want to reinforce that kind of language we’ve already been struggling to contain.
At least he knows the opposite word for heaven!
Speaking of death, T’s fascination with cemeteries has resurfaced. He always notices them during our local drives and road trips.
During our recent drive to the Bluffs, we passed by a few cemeteries and sure enough, he spotted them and asked what they were like inside.
I reminded him that prior to the pandemic, he had visited my Pa’s grave many times. But he clearly forgot about these visits.
He asked if we could visit the cemetery where he was buried and I said we’d to take him this weekend.
During bedtime this week, he asked me interesting questions like: did all tombstones have RIP written on them; what bodies look like underground; and whether someone will come clean his tombstone when he’s dead and buried.
It was not exactly the most upbeat conversation, and I felt bit sad talking about it, but I answered each question candidly, because it’s important to validate his thoughts.
The hubby wasn’t concerned when I spoke about it with him afterwards. He thinks T is being curious.
During bedtime last night, T asked me in his hilariously blunt way, “So how many more days until we visit your dead Papa?”
As with everything in our life with T, you gotta laugh at these unintentionally absurd moments.
I told T he would’ve loved my dad, because he was kind and caring. Similarly, I think Pa would’ve been very amused by our T.
Our T has found a kindred spirit in a superhero with anger issues and the irony is not lost on me.
Last week’s loan from the school library was a non-fiction book featuring the green Marvel superhero and we enjoyed reading it over several nights.
I love that reading comics or books inspired by comics is more acceptable now. Letting kids read what interest them help them develop an enjoyment of reading.
T was very engaged and asked great questions about concepts like energy and muscle mass.
I grew up loving superheroes. Comics provided an escape. I loved the X-Men comics, because they provided a metaphor for being different.
I was Batman to T’s Robin for Halloween 2017.
Some saw the X-Men’s plight – living in a world that feared them – as a metaphor for racism, ableism and for me, homophobia.
I am amused that T is interested in the Hulk, a brilliant scientist who struggles with controlling the strong angry monster in him.
Our T is a bright, capable, determined and caring boy full of potential.
Just this Friday, his teacher let us know that he’s very good with counting money.
I saw this when we did a worksheet on Saturday how quickly he did the questions in his head.
Regulating his emotions is challenging. The rude words and anger pop out.
He hasn’t leveled any cities like the Hulk, but the emotional debris his worst moments leave behind can be chaotic and disruptive.
This Sunday morning, I had a fun day all planned. After finishing his work in the morning, we would go on a hike as it was a beautiful day.
He wrote the lower case “M” incorrectly on his worksheet and I asked him to correct it and it triggered a tantrum.
Out came the rude words and the hitting and I had it. I got up and left the table.
T as Venom for Halloween 2019.
Parents caring for individuals with FASD often speak about being their child’s external brain.
To put this in superhero terms, we’re the Alfred to Batman, the Jarvis to Iron Man, the Aunt May to Spider-Man.
No super powers, no backstory, but I somehow keep our Hulk’s life in order.
And today, that external brain needed a break from his chaos. I sat in my room for a few hours.
Later in the afternoon, T and I went for a drive to the Bluffs – far later than I had planned.
During the drive, T talked about how he didn’t like playing Pac-Man because he always lost.
I reminded him it was important to keep trying.
I added his Daddy (the hubby) and I always try and never give up on T, no matter how frustrated he makes us. We never give up, because we love him.
T was silent, which meant he was listening and absorbing it all.
It was a pep talk not just to our superhero, but to myself.
We arrived at the Bluffs and T made a beeline for the ice cream truck and asked for a Spider-Man popsicle.
The ice cream, fresh air and outdoor time was just what we both needed.
During a work call, I got a call from T’s daycare teacher. She was not her usual calm self.
She said an older student had ran off the bus during drop off and pushed T against a wall. She had to shield him from further harm.
A few hours earlier, the hubby and I received an email from his CYW letting us know the day before T had bothered a younger peer on the bus and the mother called the principal very upset.
It was a Friday afternoon and all I wanted was to get to the weekend.
My mind was now sandwiched tightly between two extremes of emotions: one of disappointment and one of upset and concern.
This was a week ago. The past week was challenging at home and school.
One of the present challenges we have with T is his impulsivity and emotional regulation – two things that create a difficult combination.
He says the first thing that comes to mind and when he’s triggered or disregulated, he can say very inappropriate things. Lately, it’s escalated to verbal threats – to us, peers and teachers.
According to T, the older peer on the bus was bothering another peer and T told him to stop and that’s when the peer got upset.
I’m aware there are two sides to a story and that T’s attitude can escalate a situation. Nonetheless, while I have empathy for the peer, physically hurting someone is never ok and we’re working with the school to address the situation.
We are fortunate to have understanding teachers at school and daycare. We advocate on T’s behalf; we don’t make excuses for him but we frame his behaviour as a result of his disability.
The hubby and I are aware that people may not always be understanding. If his behaviours continue as he gets older, they could lead to suspensions and social alienation.
We do our best to remind T to act with kindness and to teach him strategies – like walking away or asking a grown up for help or quiet time.
Last Monday, we had a call with our FASD service coordinator – to look into funding for potential Special Service at Home.
She first asked us “Can you tell me about some of the recent wins that you had?”
The bus incidents were fresh on our minds. But we answered her question, including talking about his recent successes with reading and math.
It was a great exercise, because it allowed the hubby and I to take a step back to refocus on the big picture.
For other parents going through a similar journey and experiencing the same frustrations, I can’t emphasize enough the importance of doing this.
To reset.
Thankfully, this past week was a short one and we had one goal in mind for our Easter long weekend – to reset, Daddy, Papa and T style.
Sunday was gorgeous – cool but bright and sunny – and we went for a very satisfying 2.5 hour hike at Mono Cliffs.
T is in his element in the outdoors. He had lots of space to burn off the candy he had instead of breakfast that morning.
The outdoors calm him down; it calms all of us down.
Our hike was a wonderful way to cap off a calm, pleasant weekend at home.
As I watched T stare at the cliffside views and the clear waters, I reminded myself to not let the challenges get to me.
It’s important to acknowledge them, to take them seriously, but to also let them go and move on.
T is a great kid. He is a work in progress – but aren’t we all? He’s made great gains and he will continue to make gains.
And the battles? We will face them as we always have – one at a time, together, Daddy, Papa and T style.
I spent last weekend filing documents that have piled up over five years.
Being a parent is a full time job on top of a job.
Being a special needs parent is like having an extra job on top of parenting – managing school and service appointments, taking your child to appointments, keeping track of reports and doing your best to follow up on recommendations.
So much paperwork has piled up from the last five years from school – e.g. IEPs, report cards, T’s lovely work – and medical and community services – e.g. therapy reports, T’s recent diagnosis.
I’m usually organized, but with the pandemic and the added job of managing Ma’s appointments, I’ve had no energy to organize the clutter.
Last Saturday, I hunkered down for an afternoon and sorted through the mess.
And this was the result:
T’s work from preschool and kindergarten were sorted into their own bags and binder. It was a joy seeing his artwork and scribbles/printing – reminding me that progress is steady.
I filed reports from elementary school – IEPs, safety plans, report cards – into one binder, in chronological order, because I’m anal retentive.
His most important documents – adoption papers, our wills, his therapy and diagnosis reports – were sorted into a filing accordion ($3 from the dollar store!) so they’re in one place.
And the most therapeutic part – I ended up with a pile of documents I could put in the shredder!
Celebrate and Remember Every Milestone and Hurdle
It was therapeutic to look back at the things that consumed our thoughts.
This was a goals document we prepared for a meeting with T’s developmental therapist, a service provided before he started pre-school.
It was humbling to see how our use of language has evolved. Our perspective of “bad” has changed into one that recognizes these are challenges.
This was a growth chart his developmental pediatrician provided during his first assessment that resulted in a prognosis of at risk FASD.
It’s funny to think back about how I obsessed over how his height and weight was compared to the average peer. At some point, I stopped worrying.
It’s like how we are now motivated to help T move up his reading levels – but also recognize he will do so at his own pace.
This “FASD: Strategies Not Solutions” booklet was provided during a parenting workshop hosted by the Children’s Aid Society.
I put it on my bedside table as something to re-read over the coming weeks.
The best part of the filing exercise was coming across so many wonderful photos from T’s toddler and preschool years in Montessori.
He was just starting his school experience. He was so small and innocent. Things seemed so much simpler back then.
Then I stumbled across the letter from the administrator of the Montessori telling us that T was not invited to apply for the Fall term – what would’ve been junior kindergarten – because of his challenging behaviour.
I didn’t feel the rage I felt when the incident first happened. I felt peace and gratitude.
His school life continues to have ups and downs – but that incident redirected T to public school and he is all the better because of it.
So I’m sticking my tongue out again at those stupid Montessori administrators. Shame on you.
It was very satisfying to get the filing work done.
That evening, the hubby, T and I enjoyed a long walk. On the way back home, we stopped by the local Vietnamese restaurant and picked up Pho and spring rolls as our weekend treat.
A dear friend asked me for campsite suggestions and it took me down a road of happy memories.
I started camping at 21 when a friend invited me. We camped together almost every summer for nearly 20 years with the hubby and his partner.
I never camped as a child and it was an experience I wanted to share with T when we adopted him.
Since age 1, T has gone on camping and outdoor adventures and I treasure each experience.
I believe the outdoors are great for kids with FASD.
Every child is different. For T, the vast outdoors give him plenty of space to run wild and safely expend his endless energy.
I believe that green therapy provides healing qualities for the mind, body and spirit.
Sharing my picks with my friend took me down memory lane to fun camping adventures with T.
Summer 2016
We’re blessed to live in a province with an abundance of parks with campsites that are a short drive from the city.
My favourite park is Killbear, located near Parry Sound, Ontario. This was the first campsite we took T to, two months after he entered our lives.
T was just 1.5 year old. Look how tiny he was!
Yes, we set up his portable crib! That stuffed Ladybug has been with us on our adventures since Day 1 up till our recent Spring Break trip.
T’s first time waking up at a campsite.
I’ve posted this photo of T looking out at the beauty of Georgian Bay from the rocky shores of Killbear before. I never tire of thinking about the look of amazement in his eyes.
One of my favourite candid photos of T and I. He did not enjoy swimming in the water that summer because it was too cold.
One of my favourite photos of T and the hubby, taken by the windswept “AY Jackson” tree. It’s tradition to take photos of T with this tree during every visit – to mark the passage of time.
Later that summer, during Labour Day weekend, we went on a second camping trip – this time, with my camping friends at beautiful Algonquin Park.
This was T about to go on his first kayak ride!
Summer 2017
We returned to Algonquin the following summer. There is so much to explore at this park.
It was evident from a young age how drawn T is to the water.
This was T’s first canoe ride around Opeongo Lake.
The scenery was beautiful. But our two-year-old still needed his afternoon nap.
We stopped on a small island and had it all to ourselves. We enjoyed a picnic. In just one summer, T became comfortable in the cold lake water.
Look at that vast open space for our little guy to run around in and explore!
On our second evening, the temperature dropped to 8 degrees Celsius and we thought we were gonna freeze to death. T woke up crying of the cold so we took him out of the crib to sleep with us.
Snuggling together in a tent is a priceless experience – especially when you wake up next to this sleeping pose at 7 am.
Summer 2018
In 2018, we camped at Bon Echo, which had scenic lakes to canoe and kayak along.
I mean, look at this lovely rocky facade.
And this lovely small island we stopped at.
T enjoyed swimming during this pit stop.
And a little snooze on the paddle back.
Camping food is the best! My friends and the hubby and I share cooking responsibilities and we have the best grilled meals!
This grilled pineapple was amazing!
This was the last night from our very last camping trip to date.
We woke up the next day at 5:30 am to pack up and leave because rain was in the forecast.
This soothing pink rainbow sunrise greeted us as we drove out of the park.
We did not camp the following summer because the hubby was knee deep on a busy work project and then the pandemic hit half a year later.
T walked in the door with the hubby, who had taken our cat to the vet.
We circled him with a congratulatory hug because his teacher had e-mailed us great news.
She had a regular check-in with T’s reading. He had been reading at Level 4 – on the Developmental Reading Assessment system – the past few months.
She tried a Level 10 book and he read above 90% accuracy, asked great questions and made excellent comments about the pictures. So this is the instructional level he will read at now.
The expectation for Grade 1 is to get to a Level 16 reading level at the end of the year.
As we are well aware with our parenting journey, every child moves at their own pace.
For T’s Independent Education Plan, his teacher set the goal to get to Level 10 by the end of the year. With three more months of school, we’re hopeful to help T get closer to Level 16.
I was on a work call when I received his teacher’s email and I teared up. It was a busy frenetic week and the good news was very welcomed.
I paused the meeting to share the news with my colleagues, because I was so proud.
We told T how proud we are and how his practice has paid off. We could tell he was proud.
I returned upstairs to work – feeling that adrenaline rush of pride and awesomeness.
Then I heard T screaming and throwing a fit.
I went down to investigate. Turned out our little genius had squeezed himself into the tiny cat crate and now couldn’t get out.
I had quite the chuckle, because kids really do keep you humble and grounded.
But I still felt proud and continued to ride the high.
Then I figured I’d let T sweat it out a bit longer in the crate. Maybe it’ll teach him to think twice before crawling in next time.
And before anyone freaks out and reports me to children services, he figured out how to get out on his own.
Special needs parenting often leaves caregivers feeling perpetually foggy headed.
Thanks to amazing colleagues, I checked out of work. I told family to e-mail me about urgent issues, but I tuned out everything else.
I slept very well – passed out before 11 and woke up at 9. The 10-hour sleeps, fun at the pool and beach, and plates of fresh tropical fruit helped clear the persistent fog in my head.
Spring Break was an important reminder about self care and refilling my cup to help others.
I returned home with renewed energy for T.
I miss having plates and plates of fresh mango, papaya and pineapples for every meal.
I spent last weekend organizing and filing away documents related to T’s school and community services that have piled up over the past year.
It helped the hubby and I prepare to regroup with T’s FASD service coordinator on Monday.
It had been several weeks since they provided T’s FASD diagnosis and the hubby and I had a chance to digest the report and recommendations.
We had a great discussion focusing on what we feel are the priorities for T’s immediate future:
Behaviour Support – Now that T’s aged out of behaviour therapy services with Surrey Place, they recommended another organization’s 12-week parent-child program that may be a fit. There is a waitlist and we asked if the coordinator could help us with the intake process. T has made great gains and we want to help him build on his success.
Physical Recreation Activity – We’re gonna register T for swimming lessons this summer and are looking at basketball team activities to build on his teachers’ observations of how much he loves it at school and to give him opportunities to build teamwork skills. The coordinator let us know about potential supports that may be available for these activities.
Respite Support – One recommendation in the diagnosis report is the importance of self care for the hubby and I. The coordinator is helping us look into potential respite services.
Social Connection Opportunities – We also told the coordinator it was important for us to build a community of similar aged peers for T who are on a similar journey as him.
It was very helpful to start to collaborate with the service coordinator to identify a plan for T and we are reconnecting again in a few weeks.
Meeting with the coordinator reminded me about who we work hard for every day: our amazing T.
It was one of those clear-headed moments of gratitude and optimism – and I savoured it, because dark clouds and fog are always on the horizon.
During recent moments of stress, I am thankful to be able to mentally escape to recent memories on a calming beach unplugged from reality.
We’re blessed T has a super organized teacher and a dedicated Child and Youth Worker.
Having an Independent Education Plan (IEP) is helpful. It doesn’t mean that less is expected of him, but that he is set up for success.
Grade 1 has had ups and downs, including: a period of disruptive behaviour, his CYW’s unexpected departure, and adjusting to changes to his medication.
But as life with T continues to show us, when we persevere, we get through the rough patches.
As we entered the second half of the school year, I feel hopeful we’ve settled into a positive rhythm.
His new CYW is great. She is experienced and has kept routines that T’s previous CYW used.
T’s teacher’s extra homework is making a positive difference. It’s part of our evening and weekend routine and we see a confidence for academics developing in T.
The school was also able to fast track an OT assessment for T to help identify the cause of his disruptive behaviors – such as “digging” and “thrashing” movements and “buzzer sounds” – and to identify strategies to reduce or replace these behaviors.
It’s normally a two-year waitlist but he had his first in-class assessment this week, two months after the request was submitted.
I feel grateful for the school’s effort, because it demonstrates they understand T’s behaviours aren’t “bad” or intentional, but rather because of a disability – including impulse control issues.
Gym class has also been a struggle for T. He is not keen to participate and for his recent report card, his teacher wasn’t able to give him a grade for “Dance,” because she didn’t have any evidence.
During the week before Spring Break that T had to stay home because of a cold, his gym teacher asked if we could complete a dance assignment with T: work with T to create a dance to The Gummy Bear song with different movements that show opposites – e.g. up and down.
I joked with the hubby that it was a fake assignment and the teacher was fucking with us.
It was the last homeschool assignment we had to do with T before Spring Break and we filmed it 8 hours before we woke up to leave for the airport.
While it was not Britney Spears level choreography, T did a super cute job.
After we submitted the video separately to T’s teacher and his gym teacher, his teacher e-mailed to let us know she will suggest to T’s gym teacher that similar future assignments can be completed at home, where T is more comfortable.
My initial reaction was, “Oh God! Please don’t punish us like this!”
But I then realized how amazing it was to have a teacher willing to work within T’s comfort level to maximize his success.
The hubby and I gladly agreed and thanked her for her inclusive and accommodating approach.
On the Sunday before return to school, the hubby worked with T to make two birthday cards for classmates.
His teacher provides a monthly calendar that includes student birthdays as a way to encourage classmates to think about others.
I remember how happy T felt last month when his classmates created cards for him so we reminded T about the importance of paying things forward.
The rainbow cards he created, pictured at the top, were lovely!
This past week, I celebrated my birthday and got my own homemade cards from T. I put them on my home office desk.
I don’t wish for much during birthdays nor need anything other than my loved ones’ happiness.
Although this homemade carrot cake by the hubby was delicious!
T had an amazing return to school after Spring Break. 5 out of 5 great days of following routines, participating in class and completing his work.
That was the best birthday gift I could ask for and I hope his positive momentum continues.
Whenever we daydreamed about our resort getaway during the pandemic, the hubby and I always said we’d take advantage of the resort childcare services.
But we never used the service, because the truth is, we enjoy having fun with our guy.
As many parents will tell you, it is truly a blessing to experience the world through the wonder-filled eyes of a child.
Despite some hiccups, we had an amazing trip and would’ve been sad to experience any of the moments without T.
The last seven days have been an escape from reality, the grind, stress and responsibilities. I am super thankful for the memories we created.
Some memories were unfortunate, such as the hubby getting a stomach bug that kept him in bed for two days in the middle of our week away.
During those two days, I was a single parent and there were moments that felt more like a chore than a vacation.
On the second day, T was down. He said that he was very sad that his daddy was sick. So I worked hard to take T’s mind off his worries.
We spent an extra long time by the waterpark and pool and we took the resort trolley for a ride to explore the grounds.
During dinner, I watched T stuff his face with spaghetti in meat sauce – he had this for every lunch and dinner – and I felt that inner joy that comes once in a while; that swelling of gratitude that overwhelms my emotions.
I teared up as I stared at my life in front of me: I didn’t need to escape. Thanks to life’s mysterious ways, this wonderful boy found and rescued the hubby and I six years ago.
“I get back up and I do it again. I get back up and I do it again…”
One of my wishes with our vacation is to overfill T’s bucket with happy memories – so he has them during grayer days.
I loved watching T play at the beach, with its soft white powder and clear turquoise water.
The waves were rocky and persistent and made swimming an enjoyable adventure.
For nearly an hour, T jumped and hurled himself fearlessly onto the waves.
Sometimes, he succeeded in jumping over them or into them.
Sometimes, the waves were higher than him and knocked him over.
But he kept getting up again and again – with a big smile and hearty laughter.
I couldn’t help but draw a parallel to life as a special needs parent; of a child with FASD.
The waves keep coming at you every day, even on days when you’re not ready for them.
Let’s not even talk about the waves we all had to endure during this pandemic!
Some days, you ride them. Some days, you even coast wonderfully. Some days, you get knocked over onto your ass.
But you get back up and you do it again.
You learn to surf and ride the crest of the wave. Because it’s worth it for the high and joys of facing this life head on with your child.
The alternative is to stay away from the beach and to miss out on what this beautiful imperfect life has to offer.
“I get back up and I do it again,
I get back up and I do it again,
I get back up and I do it again,
I get back up and I do it, I do it again.”
– “Why Do You Love Me?” by Garbage
I’d be remiss and insincere if I said this trip has been completely relaxing.
T’s had numerous irritable moments – filled with loud outbursts of telling us to “Shut up” when he wasn’t getting his way; often in public and we had to bite our tongue to avoid escalating the situation.
Last night, during one of his outbursts in our room, I had enough and told him to stop using rotten and rude language, because it was ruining the mood of our vacation.
I didn’t like telling him that nor did it feel good to say it, but it needed to be said. Cue the waterworks and crying. I walked away and went to bed.
This morning, T woke up and climbed into bed and snuggled with me for 30 minutes.
After breakfast, we went to the waterpark and played in the wave pool for an hour, splashing and laughing.
At one point, he said, “I love you.”
I smiled and hugged him and said, “I love you” back to him.
Then we went back to our room to change and relax in the air conditioning before lunch.
“I get back up and I do it again. I get back up and I do it again. I get back up and I do it again. I get back up and I do it, I do it again…”
The boy wore a swim shirt like T and zeroed in on him in the wave pool.
I watched with amusement as he tried to get T’s attention. As T bobbed up and down, splashing water, lost in his own world, the boy followed in pursuit.
I felt the parental duty to intervene and finally told T, “The boy wants to play with you!”
During our two and a half days, and counting, in Punta Cana, we spent our mornings at the awesome waterpark at the resort.
T couldn’t stop talking about it for weeks – counting down daily, 39 days from our trip – after we showed him pictures.
There are waterslides of all kinds: some you go down by yourself; some in pairs on inner tubes; some wind around in circles; some are a steep straight drop.
It was paradise for T and we felt thankful for this escape.
It was a joy watching T’s swim skills grow. It had been a while since we took him to the waterpark back home.
We no longer have to stay at the bottom of the slide. We can stand at the end of the pool and let him swim to us.
These seven days are about letting go of the need to worry.
It’s about having cold sweet drinks – within reason; hyperactive child be damned.
T loves these mango slushees.
The wave pool was our last stop in our two hours at the waterpark.
T loved when the waves started and loved swimming at the deep end of the pool. We gave him his space while keeping a close eye.
We first noticed the boy circle T. It became apparent he wanted to play with T.
When he saw T splashing water at us, he began splashing at us too. He also suggested the two of them form a team to “gang up on your dads.”
T laughed big hearty laughs as the two chased us around the pool and splashed at us.
When the lifeguard gave us his warning that he was going to start the waves, everyone had to move to the shallow end.
The boy saw that T was still in his own thoughts in the deep end, so he went to get T. Holding T’s hand, they walked to the shallow end and watched excitedly as the waves started.
We let them play for a while. Then the boy’s dad showed up. It turned out they’re from our same province.
The dad and us decided it was time for lunch and so we asked T to get out.
T said goodbye to the boy. I could tell how much he enjoyed playing with him.
It was nice for the hubby and I to watch T play so nicely with him.
Friendships always weigh on my mind, especially with how much the pandemic has disrupted opportunities for T’s social development.
Social relationships continue to be one of the top challenges for T at school and daycare.
But this week was about letting these worries go for a few days.
After we dried off, T walked back to the wave pool to say goodbye again to his friend, who was no longer there.
As we walked back to our room, T went on about how much fun he had with his new best friend.
The alarm went off at 4 am and T shot out of bed like a cannonball. He was ready to leave for the airport before the hubby and I.
I had been up by 3 am after two hours of sleep. I couldn’t sleep from both excitement and anxiety.
We had booked this family trip to Punta Cana, Dominican Republic back in September.
The thought of a getaway gave me the motivation to get through the ups and downs of the last few months.
When the Omnicron wave hit in December, I gave up hope our trip would happen. Then things started opening up again.
But I didn’t want to celebrate or talk about this trip until our plane landed in fear I’d jinx it from happening.
The week leading up to our trip was a gauntlet. Four busy work days mixed with three medical appointments for my mom and the unexpected curveball of T being sent home with a runny nose and cough Monday morning.
He was asked to stay home from school all week. Not only did it add homeschooling to my already packed week, but the anxiety of missing out on our trip stressed me out.
Thankfully, he was not sick with COVID and his cold went away two days before we left.
Friday was a long travel day and T was off-the-wall excited.
We arrived before dinner and the sun was setting. That didn’t stop T from wanting to squeeze a short swim in before the pool closed.
Having had weeks of frigid Canadian winter weather, jumping into a pool in nothing but a bathing suit was a treat!
The last two days have been wonderfully uneventfully relaxing.
We slept in till 9 am every day, had breakfast, spent the morning at the amazing waterpark in the resort, chilled out and napped in our room after lunch while T played on his Switch, and spent the late afternoon at the beautiful beach.
I didn’t realize how mentally and physically exhausted I was until I didn’t have to think about or do anything other than let go of everything and relax.
I know these seven days will fly by and I am going to focus them on doing absolutely nothing but having fun with our T.
I thought about this expression by French philosopher Voltaire after T broke his four-week streak of perfect spelling tests.
T’s teacher recently introduced Words of the Week; six words given on Mondays that he practices for a test on Fridays.
T crushed the first four weeks and we posted his tests proudly on our fridge.
Last Friday, he broke his streak and came home with a 5 out of 6.
The husband gave me a faux sad look and I told T he still did great and we posted the test up proudly with the others on the fridge.
The moment made me think of this video.
Writer Dan Heath muses that we often obsess on things that don’t go well and he encourages us to obsess instead about things that are going well and to scale up these bright spots.
I’m gonna keep it real. The following Saturday morning, I walked by the fridge and looked at that damn word “Us” that T misspelled.
It irked me because spelling was one of the bright spots in T’s up and down school journey.
Thanks to his teacher’s creative ways to encourage kids – such as creating a keychain of words to practice in a fun way – T is motivated to do well.
He even used it as a bedtime delay tactic last week when he got out of bed and said he needed to practice his words.
As his parent, I want him to have many chances to feel good about school and himself.
Then I realized how silly I was being. T was doing well in spelling and the hubby and I are gonna build on his progress and try to spread his enjoyment and motivation into other areas of school, such as reading.
And I walked away from the fridge.
Don’t get me wrong: doing well on tests is important. But I want T to focus on doing his best, learning and growing, rather than perfection.
The latter is focused on a fixed state in time; the former is focused on continual change and progress, also known as growth mindset.
As life with T reminds us, every day is a new chance to try again.
This Monday, T’s teacher announced that Words of the Week would be a review of the 30 words from the last five weeks; she would pick six random words for the test.
The gauntlet was thrown. Our family’s honour was on the line. Cue Rocky training music.
Jokes aside, we kept it chill with our no pressure approach of practicing two nights a week, including before the test.
Then we put it out of our minds and relaxed.
This past week, we also made adjustments to his medication – increasing the afternoon dose of methylphenidate – and as anticipated, there were a few bumpy moments.
By Friday, we were ready for the weekend.
As the hubby and I unpacked his school bag last night, we saw his spelling test: 6/6!
We cheered loudly and told T we’d celebrate with his dinner of choice. He picked McDonalds.
There was another surprise in his bag: a beautiful painted art he made in class (pictured up top).
I held it up against the glow of the golden hour sun and the moment felt like a bright spot in our week.
Every bump along the way from Monday to a Friday vanished into the past.
We complemented T on his work and he smiled and shouted, “It’s a masterpiece!”
Reading to T as he rests his head on my shoulder is a joyful way to unwind.
We’ve been reading at night with T since we adopted him at 14 months.
As noted by the American Library Association, young kids that are frequently read to are more likely to recognize letters, have word-sight recognition, and understand words in context.
More recently, it’s nice to see T becoming more active in asking questions, retelling bits of the story and occasionally asking to read along.
In the last year, we are focusing hard on building his reading and decoding skills.
We’re thankful his teacher gives daily reading homework. Combined with bedtime reading – where there is no expectation other than to listen – we will slowly grow his skills.
As a follow up to my posts in 2020 and 2021, I’d like to share a selection of bedtime stories we’ve enjoyed in the past year.
It’s Okay To Be Different by Todd Parr
Todd Parr’s books are filled with positive messages that celebrate diversity and his joyful art reminds me of Keith Haring’s work.
This book was one of the weekly books T borrowed from his school library. I love the message that affirms to kids – with images of kids of all ages, sizes and abilities, from different backgrounds and family compositions – that it’s okay to be different!
The last time we read this, T asked to read. With the exception of a few words, he read it cover to cover on his own. The best part? One page stated: “It’s okay to be adopted.”
Creepy Carrots by Aaron Reynolds
As a horror enthusiast, I love that T is discovering a love of scary things.
This book is more funny than scary and is about Jasper Rabbit who loves devouring wild carrots, until they start stalking him. Is he losing his mind or is he being gaslit?
Beautiful illustrations bring this comical story – and its twist ending – to life!
Clifford’s Good Deeds by Norman Bridwell
I discovered Clifford books when my family immigrated to Canada when I was eight and it’s been fun introducing them to T.
T owns a collection of the first six Clifford books. He loves the idea of having a big red dog. The story about Clifford doing good deeds that go awry was particularly amusing to him.
Bon Voyage Mister Rodriguez by Christiane Duchesne
As T gets older, he is naturally asking bigger questions about life, such as death.
Books provide kids with safe spaces to explore hard topics. This story of Mister Rodriguez, who is only visible to children and sickly animals, is a surrealistic story that leaves things open ended for kids to interpret what happens after life.
Here We Are by Oliver Jeffers
T and I discovered the charming work of Irish writer and illustrator Oliver Jeffers through one of my dearest friends, who gifts T a new Jeffers book on every birthday.
Gifted to T for his 6th birthday, this story is narrated by a dad to his newborn about what they need to know about life.
As a parent, it made me realize just how much info there is to unpack for a little child. For T, he loved the quirky illustrations and the fun facts about space, deep ocean animals, and different cultures.
Happy Birthday, Big Bad Wolf by Frank Asch
Reading inspirations come from all places. This little book came with a McDonald’s Happy Meal, so it’s literally a tiny sized book.
It tells the story of the Little Pig who wants to throw a surprise party for the Big Bad Wolf, despite his parents’ hesitation. It provides a lesson about giving people a fair chance to prove themselves to others.
The Day the Crayons Quit by Drew Daywalt
The best children’s books are the ones that can be enjoyed by both kids and adults.
This wonderfully-illustrated book is about a boy named Duncan who receives letters from the crayons in his crayon box, either lavishing appreciation or complaints about his use of them. Duncan’s response is truly inspired.
Books are great tools to educate kids about important social issues in relatable and non preachy ways. This story highlights the plight of Indigenous communities in Canada that do not have access to clean drinking water.
T loves to play at the sink – at home and school – for prolonged times, because he enjoys the sensory input of water. I try to balance indulging his play while guiding him to not be wasteful.
Change is hard for kids. It was heart wrenching to see T process an unexpected change this week.
Change is harder for kids such as T.
If you hang out with the hubby and I, you’ll notice we give T ample warnings – 10, 5, 1 minutes before we move to the next activity, especially if T is currently doing a preferred activity.
It may seem excessive but sudden transitions often don’t go well with T, so we are proactive at using transitions to mitigate tantrums.
A few years ago, we learned about social stories and how these visual tools can help kids who struggle with social change.
In T’s case, his Montessori support created a social story to prepare him to move to a new classroom and teacher.
We read it several times the week before the change. He loved it so much it became a bedtime story staple for months after!
More recently, the pandemic brought a doozy of changes – lockdowns, virtual schooling, mask wearing, distancing – at an unrelenting pace. For adults, much less a child, it was overwhelming.
Big Unexpected Change
After recently receiving T’s FASD diagnosis, as much as we expected it, I didn’t want any more big life changes for a while.
Two weeks ago, T’s wonderful Child and Youth Worker, who has worked with T the last year and a half, let us know she got a new job and would leave very soon.
We were very happy for her moving to a dream role, but it still sucked because this was a huge loss for T. She was so good at her job and T and our family loved working with her.
My mind shifted into change management and how to set up the best transition for T.
Even though I knew it was a long shot, I asked if she could start her new role after Spring Break in four weeks. The break may give T a mental space between her and the new CYW.
Nice try but no cigar.
I asked if there could be a transition where both her and the new CYW worked together with T.
Thankfully, with the principal’s support, a new CYW was brought on to allow a full week transition with both CYWs this week.
The hubby, CYW and I discussed how we would break the news to T. We‘d tell T this past weekend and then she‘d tell him on Monday.
We kept the message simple: she’s leaving because she got a new job; T didn’t do anything wrong; she loves him; we will keep in touch.
We gave staff at T’s after school daycare a heads up, so they can be aware of and keep an eye out for potential behaviour symptoms.
While we were still sad with this change, it felt good to have a change plan in place.
When Best Laid Plans Don’t Go As Planned
The hubby and I broke the news to T on Sunday night after a fun afternoon of sledding.
He seemed to take the news ok and was glad to hear he would still see her this week.
Then the bomb dropped on Tuesday afternoon. His CYW let us know that it was her last day instead of the end of the week. It was a decision that was out of her and the principal’s hands.
Poor T was caught off guard like a deer in the headlights. He repeatedly told her, “But you said you had two more days.”
He cried during the bus ride from school to daycare. The empathetic staff let us know that he ran out into the hallway and around the school and was not himself.
Tuesday night was challenging. He was moody and emotional. During bedtime, he repeatedly talked about how sad he felt.
As a parent, I think it is important to let kids have the space and time to feel the fullness of their emotions.
But it still breaks my heart to see him sad. Processing big emotions with so little life experience as context is hard.
As I learned with change theory, there are four stages of acceptance – denial, anger, acceptance and commitment.
I see T experiencing the denial and anger stages right now.
Always Look Forward
The hubby and I are focused on guiding T forward, even though we feel the loss too.
The first day without his former CYW was expectedly up and down. His new CYW let us know he told her many times he felt sad.
On the bright side, we are thankful the new CYW is continuing to use the effective strategies that are already in place.
It also sounds like she has the savy and skills to recognize T’s boundary testing behaviour and to respond appropriately.
So despite the sudden and rocky change, there are many positives to focus on as we all help T move through this significant change.
Thankfully, we have a long weekend ahead and we are focused on relaxation.
Fingers crossed, we plan to have a curbside meetup with his CYW so T can have a calmer proper goodbye and both of them can have better closure, as I empathize this sudden change was difficult for her too.
Spring Break is around the corner and the three of us are using that as motivation to get through these next few weeks.
After all, if there is one constant thing in life, it’s change.
Making cucumber kimchi and sledding down icy hills helped us keep it chill this weekend.
Six weeks into the new year and I’ve been working hard at my resolution: to be the calm in T’s storm.
It’s a life lesson I wish I could’ve applied earlier in my parenting journey – especially now that T’s recent FASD diagnosis confirmed emotional regulation is an area of impairment.
You can’t change the past and can only focus on the blank slate of the now.
I recently saw this image posted on a FASD parenting group and it resonated with me.
When I respond with anything but calm during T’s fight or flight moments, it’s throwing gas into a forest fire. It never turns out well.
The hubby and I have many recent conversations about how much better our mornings and evenings are when we don’t react during T’s moments with anything but calm.
Sure, I’ve bitten half my tongue off, but seeing a positive change in T has been gratifying. It’s paying off in dividends.
Even his CYW says he’s using better strategies and making better choices in school.
There are bumps throughout each day, don’t get me wrong, but I’m focusing on the big picture.
Oi Kimchi
Speaking of keeping it cool as a cucumber, I made Oi (cucumber) Kimchi this weekend, one of my favourite side dishes commonly served at Korean restaurants.
I found this @MyHealthyDish recipe and was excited at how easy it was to make. I also had all the ingredients at home.
I chopped six baby cucumbers into thin slices.
Then tossed it into a bowl and mixed it with 1 tablespoon of salt. I let it sit for 5 minutes to let water seep out of the cucumber.
After draining the water, I tossed in 1 sliced onion, 6 stalks of sliced green onions (green part), and 6 cloves of minced garlic.
Then I added in 2 tablespoons of gochugaru (ground dried red chili flakes), 1 tablespoon of sugar, 1/4 cup of rice wine vinegar, 1/4 cup of sesame oil and a splash of toasted sesame seeds.
For the best results, I let it sit overnight in the fridge and voila.
I prepared it on Friday night, the most soul-soothing way to unwind after a work week.
I served it on Saturday for dinner with jasmine rice, kimchi and grilled steak.
Sunday Sledding
On Sunday, after breakfast, with zero fuss, T sat with me and zipped through his learning activities.
He did such a great job with his three beginning consonant sound assignments.
These are the parenting wins I hang onto and that motivate me to keep going.
By the way, does this image circled in red below look like a plate? I had no idea what the hell it was and T looked at me bemusedly and blurted out quickly, “It’s a plate!”
Rings of Saturn was my guess!
After brunch with family, we went for an afternoon of sledding at the park.
With wind chill, it was a blistering -15 degrees. Who needs Botox when you have Canadian winters?
The giant hill was covered in ice and boy did it make sledding quite the rush.
As T and the hubby zipped down the hill and past me standing up at the bottom, my hands buried deep in my warm jacket pocket, I smiled and cheered them on loudly.
After an 11-hour flight, we arrived at Lima, the capital of Peru and one of the largest cities in South America.
We had one full day of sightseeing and enjoyed the beautiful architecture and colourful buildings.
Vibrant flowers sprawled everywhere.
We saw olive trees for the first time. Look at those gnarly trunks and twisty dance-like branches.
The unexpected highlight was the Central Park in Miraflores. There were wild cats everywhere!
This girl picking up a cat for herself still makes me chuckle.
Cuzco
Cuzco is a city located in the Peruvian Andes and the former capital of the Inca Empire.
The majestic mountains and jaw dropping view still blow me away.
A friend and I were obsessed with the Llama, Llama children’s books at the time and imagine my surprise at seeing one in person!
Walking through the village in the mountains and through narrow stone pathways felt like stepping back in time.
Visiting a salt mine was a fun experience. We bought small pouches of Peruvian salt that we still use sparingly these days.
I guess this was an ancient concert hall?
We loved the beautiful Spanish architecture – and not a skyscraper in sight!
Ollantaytambo
Ollantaytambo is a village in Peru’s Sacred Valley. We stayed for two days to acclimatize to the altitude before visiting Machu Picchu.
Ollantaytambo is known for the ruins of an ancient Inca fortress.
The hike through the hillside stone terraces was breathtaking.
These were guinea pigs in a local’s home. I will not share the photo of the hubby’s dinner!
Machu Picchu
Considered one of the new Seven Wonders of the World, words can’t describe how breathtaking Machu Picchu was in person.
This ancient 15th century Inca fortress is located almost 8,000 feet above sea level.
You could do a four-day hike to get there or do a daytrip and take a train from Ollantaytambo then ride a bus up a narrow terrifying mountain path.
Exploring the ancient ruins was an incredible experience and I marveled at the ingenuity and magnitude of their engineering.
Here’s one of the living quarters.
We stopped regularly to take in the views. Our heads were literally in the clouds.
Iguazu Falls
After a short flight, we spent the next two days exploring Iguazu Falls.
Iguazu Falls consists of 275 falls and this stretch of double layer waterfalls captures its vast stunning beauty.
The falls are situated on a border shared by Argentina, Brazil and Uruguay.
About 80% of the falls are in Argentina. We we spent a day exploring them by hiking and by boat at Iguazu Falls National Park.
This was one of the walkways that took you to the edge of one of the falls.
This was me channeling Eva Peron. That kid looking at me probably thought I was an idiot for looking at Brazil while lipsynching “Don’t Cry For Me Argentina.”
We explored the Falls on the Brazil side the following morning, which had spectacular views of the Argentinian falls.
There were many calmer stretches and this outdoor restaurant was one of them.
We didn’t eat there but we did enjoy a delicious lunch at one of the packed cafeterias.
Argentina is known for delicious steaks. We had ten minutes to eat because we were behind schedule and I inhaled every bite of this meal that I still dream about.
Rio De Janeiro
Our final stop was Rio De Janeiro in Brazil, a city I had dreamed of visiting.
Over four days, we took in many of the local sites, including Sugarloaf Mountain.
The views atop of the seaside city were awesome.
These beautiful stained glass are part of Rio De Janeiro Cathedral, which is dedicated to Saint Sebastian, Rio’s patron saint.
This is Copacabana Beach, the region that the New York nightclub in Barry Manilow’s song Copacabana was named after.
The guide regularly reminded us we were in a dangerous place. We did not dare doubt her.
We made it out safely and enjoyed a relaxing final afternoon on the beach.
Keeping the Faith
Less than six months after our trip, T came into our lives unexpectedly and life took us on a different journey over the last six years.
As I processed T’s recent FASD diagnosis, I looked back at old photos and stumbled across our South America trip.
I recalled a memory from Rio de Janeiro.
On a rainy afternoon, we visited Christ the Redeemer, situated atop Corcovado Mountain.
Riding the tram up, the fog grew thicker and the nearby tree branches looked dream like.
When we got to the visitor centre at the top, it was raining heavily and the mountain top was covered in thick fog.
Half of our group chose to stay inside, complaining they couldn’t see anything.
Indeed, looking out, I could not see the stairs that led up to the 100 feet tall statue.
The hubby and I ventured out, even though the guide warned us we may not see anything.
As we walked up the stairs, the rain slowed down and as I inched to the top, He emerged from the fog, hands opened wide, looking down at all who stayed committed.
It was one of the most surreal experiences of my life and reminded me to always keep the faith.
In the last six years, our international travel has slowed down – raising a child ain’t cheap! – although we hope to explore the world with T when he is older.
These days, we don’t need to travel 8,000 feet up a mountain to have our breath taken away.
Smaller things make my heart soar. Like T crushing his spelling test this week, earning an “Amazing!” from his teacher, and his proud smile when he sees it posted on the fridge.
Our amazing boy reminds me everyday to never fear the rainy days, to journey through uncertain fog, and to always have faith.
After 5.5 years, we’ve answered a longstanding question about our son’s life and then uncovered more questions.
When T was 18 months old, he received a prognosis of at-risk Fetal Alcohol Spectrum Disorder (FASD).
It’s been quite the journey since as the hubby, T and I experienced the highs and lows of life with a little understood invisible disability.
We continue to be blessed with amazing supports, including school and community services that have enhanced T’s life.
His developmental pediatrician had advised to wait until T was older to be formally diagnosed.
Last November, over five years after receiving T’s prognosis, our family began the process to have T formally assessed.
The Assessment Process
In early November, the hubby and I had a virtual in-take appointment with the organization that had supported our family since T’s prognosis.
Among those present were the psychologist who‘d complete T’s psych assessment and T’s developmental pediatrician who’d complete his medical assessment.
We had an open conversation about T’s strengths and areas of concern.
Three half day in-person appointments took place – full day if you include the drive! – over November and December and one virtual consult in January to complete T’s psych assessment.
The team asked us and T’s teacher to complete several lengthy questionnaires. T’s teacher was also interviewed.
It was important for the hubby and I to be honest during this process.
While it was hard to see the answers T’s teacher provided – including how she assessed T’s relationship with peers and how she was concerned T didn’t look happy at school – we appreciated her honesty.
Receiving the Diagnosis
In late January, the hubby and I reconvened with the assessment team to review their findings.
To meet the criteria of FASD, a minimum of three impairments must be identified.
The assessment identified T had significant impairments in executive functioning, attention and focus, and emotional regulation.
With these three impairments, and knowing T’s pre-natal alcohol exposure, the team concluded that T met the criteria for FASD.
Processing The News
The assessment team asked the hubby and I about what we thought and felt.
I got one word out and burst into tears. The rush of emotions was unexpected.
The hubby and I went into the meeting hoping for a diagnosis. To be frank, we would’ve been disappointed if there was no FASD diagnosis.
So on one hand, the diagnosis validated our home and school experiences from the last few years.
On the other hand, I felt deep sadness, because FASD is not an outlook anymore. This is reality – even though we’ve always known deep down.
My sadness was not about having a child with a disability. It was being reminded the journey ahead will be hard for our sweet boy.
A few weeks later, I am at peace with the diagnosis. The hubby and I agree this is ultimately a great and freeing thing for T.
Looking Ahead
The diagnosis does not change our unconditional love for T. It strengthens our desire to help him live his best life.
Having a diagnosis will open doors to continued supports in school and the community.
It provides a tool to advocate for T’s behalf and to educate others to understand his challenges from the context of a brain disability rather than behaviour.
The diagnosis will help us advocate for the appropriate interventions that address T’s challenges and help reduce the risk of potential secondary issues, such as mental health problems, disrupted school experience, drug and alcohol problems, and trouble with the law.
The hubby and I are still digesting the detailed assessment report.
The team provided many wonderful recommendations – for home and school life. We intend to action on as many of them as we can.
We shared a modified report with the school – with T’s lengthier personal history removed. We feel that being open demonstrates our genuine intention to work collaboratively with them to identify the best solutions for T.
It is very helpful that one of the recommendations from the report was that T will require significant supports in school.
I have so many questions in my head.
One key question is how and when do we share his diagnosis with T – in a way that empowers him rather than crushes him.
It feels overwhelming to think about it.
But as life with T reminds us on a daily basis, we can only take it a day at a time.
My Life With T 