A blog about two dads finding hope, humour and heart in raising a 9 year old with great potential and navigating life with Fetal Alcohol Spectrum Disorder (FASD).
We celebrated my 40th birthday this week and I reflected on what’s happened and the what ifs.
T and I recently read a picture book adaptation of Robert Frost’s classic poem “The Road Not Taken,” beautifully illustrated by Vivian Mineker.
The poem presents the character, out for a walk in the woods, with a fork in the road. The character decides which road to take and the question is then, what if they took the other path?
There certainly were key points in my life where I had to make decisions about which path to take: which university, which career, which person to spend my life with, which home to live in.
As an enthusiast of science fiction, I amuse myself at the thought of parallel universes where multiple versions of my life live out based on different decisions I make.
One of the most important decisions the hubby and I made was to start a family.
We began this process in our late 20s, attending a wonderful workshop series called Papas and Daddies 2B.
Almost 7 years after we began the adoption journey with no progress, we were ready to call it quits, when we received a call out of the blue from Children’s Aid Society.
Not only were we presented with one match for a child, but we were presented with two matches!
The first child was a 14-month old boy whose birth mother had admitted to drinking during her first three months of pregnancy and consumed hard drugs throughout her pregnancy.
The second child was a 4-year-old Chinese and Iranian child, who had faced severe neglect. I still get haunted by the description of the child who’d often be left alone while his parents partied.
We were given very little time to decide which child to adopt. It was a hard decision, but we decided to adopt the younger child, our T.
I am a firm believer about life working out the way it should and that you are meant to meet the people that you are to meet and to have the opportunities and challenges that you face.
But I did think recently about the 4-year-old that could’ve been our son.
In a parallel universe, he would be 9 years old today. I wonder how our life would’ve been as we faced the direct effects of the neglect from his early life. I wonder about the memories we would’ve made with an older child.
I am not a person who dwells on the what ifs or to have regrets about the paths not taken, because it is a maddening and futile waste of time.
I am so thankful for the path we took in life that led us to our T.
This Saturday morning, T climbed into bed with me – bright and early, as a woodpecker pecked away at a tree in our backyard.
“My fart woke me up,” he said.
I didn’t want to wake up yet, so I shoved my phone in T’s face, hoping it would buy me a few more minutes.
T looked at photos and videos from this nature outing just two months into our life together.
T started scrolling through the hundreds of photos we’ve taken from the last five years.
He kept watching a video over and over of him walking down a set of stairs, while holding onto the railing, as the hubby stood by closely.
He was only 16 months old and still not familiar or comfortable with going up and down stairs.
T rested his head on my chest watching this video and I opened my sleepy eyes to watch it with him, marveling at how time has flown by.
The hubby treated me to steak and frites for my birthday dinner.
If a genie gave us an opportunity, would we wish away our child’s invisible disability?
I thought about this question all weekend after T and I watched Disney’s Aladdin.
On Saturday morning, with a bowl of popcorn, we snuggled on the couch and watched the movie T had recently enjoyed in class.
I chuckled when T said, “That bird has a potty mouth” in reference to Iago, the villain Jafar’s foul-mouthed sidekick bird.
I told T that’s what he sounds like when he uses bad words. Then he gave me a priceless look in return. If only I had my camera.
When the genie granted Aladdin his first wish, I asked T what he would wish for and without hesitation, he said, “A dog.”
T has a soft spot for dogs but with two cats at home, that ain’t happening – unless that Genie is also a dog walker!
Then naturally, the question was asked of me, “What would I wish for if I ever met a genie?”
Instead of doing house work, catching up on fitness or something of substance, I spent the final moments of my staycaytion thinking about what would happen if I encountered a genie.
Naturally, one of the first thoughts I had – and I imagine it’d be similar for other parents with a special needs child – is to wish away T’s disability.
But the crazy thing was it wasn’t such a clear cut wish for me.
If it was a physical disability, I think the wish would be clear and straightforward.
But T’s invisible disability manifests through his behaviours – and in turn, his personality – and so I would practically be wishing for an entirely different kid.
There is so much of T to love just the way he is.
Even his most frustrating behaviours end up being sources of amusement for the hubby and I once we cool down and commiserate about how fucking irritating yet so wonderfully lovable he is that you can’t help but to keep rooting for him and working hard to help him succeed.
But I also think so much – practically daily – about how his behaviours will impact his future.
So Genie, this is my wish: First off, I love our T for the way he was brought into this world and I do not want a different child.
What I do wish for is for the effects of his prenatal alcohol exposure on his life to be minimal and for him to be continually blessed with the love, supports and good luck to maximize his happiness, good health, independence, positive relationships, success and fortune in all stages of his life.
That was one wish by the way. The trick is to cram it all into one sentence without having it be a run-on sentence; use semi-colons if you have to.
We spent the rest of Saturday out in soothing nature.
I enjoyed my solo hike at the Moccasin Trail from the previous day so much that I took the hubby and T with me for a late afternoon hike.
We let T lead the way which meant we skirted the water rather than stay on the paved path. I loved watching him freely explore, including walking under a giant iron train bridge.
There was a branch tied to a long rope tied to a tree, so he had to give it a swing… or twenty. Brave kid!
The late afternoon sun was magically soothing.
It was the last day of winter and Spring was hours around the corner.
It was 13 degrees and the air was fresh and all of our moods were so positive.
At that moment, as the sun was setting, I really couldn’t have wished for anything more.
And what aboutyou? Whatwouldyou wish for if you had the chance?
It’s amazing how your body and mind allow you to keep going but come crashing down when you have a moment to relax.
Respite is defined as a short period of rest or relief from somethingdifficult.
It’s a word I didn’t even know until I became T’s parent and learned more about the world of FASD, of which T has an at risk prognosis.
Respite can be as short as a few hours to either rest, to do an errand or to have time to yourself.
It could be informally provided by a family member or a friend or could be more formal through a respite care provider.
For a while, we received infrequent respite from Ma and the hubby’s parents when they visited.
Our first-ever evening of respite!
I still remember how rejuvenating it felt to get our first night off to watch The Bodyguard musical four years ago, a year after starting the parenting journey.
The last time Ma watched T two years ago, he snuck out of the house while Ma went to the bathroom and it caused a panic.
Given Ma’s health these days, respite support from her is no longer an option.
The hubby and I are thankful we have each other.
We value the time the three of us spend together but we also value our divide and conquer approach to give each other alone time to rest.
I consider myself a high energy person, but raising children like T is so incredibly exhausting mentally, physically and emotionally.
I can’t emphasize enough how hard it is – at the risk of sounding like I’m whining. It is so hard!
So I am a huge advocate for self care and respite – because they allow you to be a better parent.
Taking regular time off is my number one respite strategy.
I’m very fortunate that my employer values work life balance and I schedule a week off per quarter to recharge, often time by myself.
This past week, I’ve spent most of it lying down, like a vegetable. I spent most of Tuesday in bed.
You know you’re exhausted when you’re looking at popcorn on your carpet the entire week and trying to will yourself to pick it up but it’s almost the weekend and the popcorn is still there.
But I was also productive in a self care way!
I went for walks to enjoy the sun and almost Spring weather, exploring nearby trails I’ve never explored before, like the Electric Corridor.
An empty field of electrical towers is certainly one way to… wait for it… recharge!
Walking by water, even a small pond, always cheers me up.
I surprised the hubby with a mid-week sushi lunch. We’ve rarely had sushi during the pandemic and it was such a treat!
I also made updates to my blog. I’ve been wanting to redesign the home page and to add a navigation menu and Resources page for a while and finally found time this week!
I listened to a lot of cheerful music, revisiting the boundary-pushing pop of UK band, Girls Aloud. How I wish they’d get back together. The world of pop misses them!
On this beautiful Friday, I went for a late morning walk to explore the Moccasin Park Trail after I Googled hiking trails near me.
What drew me to the trail was this Rainbow-painted tunnel.
I’ve driven by it for nearly 30 years, always wondering about it, and today, I finally got to see it in person and walked underneath it.
I love that our City encourages and promotes public community art.
It was a rejuvenating walk.
It’s surreal to think this is steps away from our City’s busiest highway.
It almost felt like a rural oasis and I love and appreciate our City’s intricate ravine system.
I could only imagine how beautiful this trail is during the fall and I pledged to bring the hubby and T next time to enjoy the fall colours.
The most responsible thing I did all week, other than make sure T was fed, was to take Ma to a rehab appointment and to register her for a COVID vaccine (hooray!).
It felt good to be almost responsibility-free and I’m sad my week off is coming to an end – but ever so thankful for the recharge.
Oh, I still haven’t picked up that popcorn off the carpet. I’m feeling hopeful that it will get done sometime over the next two days!
Facebook kindly reminded me that two years ago, we were on a family vacation.
The pandemic put a hold on our family tradition to travel during March Break.
March Break has also been deferred this year until April to help curb COVID cases, so T is in school this week.
Is this not the most adorable leash, I mean, backpack? My mom got it for T.
We’re very grateful to be safe so absolutely no complaints here. But I’d be lying if I said I wasn’t longing to be somewhere far away from home.
So here’s a short walk down memory lane to March Breaks past with T.
2018 – Caribbean Cruise
The hubby and I used to do more adventurous trips pre-parenthood but with a young and very hyperactive child, we knew to take it easy.
So we went on a cruise – and we all loved it.
It was a very relaxed trip and T loved the waterpark at the top of the ship.
We did one off-ship day trip to a nice beach resort at Turks and Caicos and T got his first Caribbean beach experience.
I will always remember T’s look of wonder as he approached the water with hesitation and then his face transformed into joy once he knew the water was ok.
Formal night.
One of my favourite memories was during a formal night dinner. We had just started to potty train T and I took him to the bathroom.
On the way back, he proudly announced repeatedly to everyone in the dining room that he had used the potty!
T still talks about the trip. While we likely won’t do another cruise for a while – potentially being stuck on an infected ship for weeks doesn’t seem appealing – it’s nice to look back at our memories.
2019 – Mexico
T was very excited about this trip.
So on the day of departure, when I told him at 5 a.m. that it was time to get up, he shot up from bed. Half awake, he bumped right into a wall.
This was an even lazier trip of doing absolutely nothing.
It was T’s first resort experience and he enjoyed lounging by the pool and we let T have all the cold fruity drinks he wanted and didn’t fuss about the sugary consequences afterwards.
One night, in the middle of the night, T woke up and told me that he loved me. I told him I loved him too and two seconds later, he puked his dinner all over me.
I still remember the smell of French fries mixed with vomit. Thankfully, he wasn’t sick – just had a lot of love and indigestion to share!
T very recently asked the hubby and I, “When coronavirus goes away, can we go back to Mexico?”
We all agreed that we will do another family vacation when we are able to safely do so. It gives us something to feel hopeful about.
I would’ve worn a face shield if I had known he was going to vomit French fries all over me!
“You’d think we were going to Disneyland,” I thought after T got super excited when I told him we were visiting a different park last Sunday.
Like everyone, we’re all feeling so restless about these “Which window am I going to look out of today?” days.
So a change of scenery, even if it was just a few steps further down the street was so welcomed.
There was a giant hill that T enjoyed running up and down over and over again.
We stood at the top and enjoyed the setting sun. It was such a nice relaxing end to our weekend.
This Saturday, we ventured out even further and spent a nice afternoon out in nature and sunshine at Darlington Provincial Park.
We could almost feel Spring in the air.
The park was only a 30 minute drive from home but felt like a nice escape from the City.
We enjoyed standing at the windy beach and listening to the calming sound of waves.
T did what T loved to do most; pick up rocks and throw them into the water.
He got lost in the moment at one point and stepped too close into the water. A wave splashed icy cold water into his rain boots. Oops.
We then did a short hike in a trail, which took us to an empty amphitheater.
T played around at the fire pit, pretending to build a fire, while I walked up and down the wooden benches, lost in the moment of the loud waves nearby.
As the sun set, we headed home, stopping by McDonald’s to pick up a Happy Meal for T – while the hubby and I had shawarma takeout.
Today was a very relaxing day and our family really needed this after the last two months.
It made me even more excited for more outdoor fun this summer!
A thoughtful gesture of recognition brought a wonderful moment of confidence for our T.
In addition to his handwriting skills, Team T at school and at home are working hard with him on reading.
Reading with T, especially at bedtime, has been a favourite activity since he was a toddler.
So many wonderful stories read over the years and snuggling together at night while reading with him is one of my favourite parts of my day.
T recently turned 6 and we’re aware that at this age and as he heads into Grade 1 next year, reading is a skill he will need to ramp up.
I sometimes feel that because his JK and SK years have been so disrupted with pandemic virtual schooling, he may be a bit behind with reading.
But there have been many great strategies and tools introduced by his school.
During virtual learning, they provided us with free access to a fantastic online resource called RazKids.
We continue to practice with it on the weekends even though he’s back in school now.
Using this online resource, T can have a story read out loud to him and then he can record himself reading the stories.
Now that he’s back in school, his teacher and Child Youth Worker send home a simple book to practice with him at night. He recently moved up to Level B books – hooray!
His teacher assigns very simple books – much more simple than the books I read to him at night. Books with simple repetition and simple sight words – such as the one pictured below.
I notice with T, he often reads by rote and takes a lot of cues from the pictures. So in one sense, he’s accurately describing the picture but not exactly reading it word for word.
And I know that’s ok, because this is part of the process of learning to read.
And it’s also ok he doesn’t know a lot of sight words yet, as it’s also part of the journey. Although his Child Youth Worker let us know this week he’s making incremental progress.
So I remind myself to be patient, because there was one point when T didn’t know how to talk either and now he’s a chatty little guy.
Recently, there was a special extra item included with his daily book sent home by his teacher: a Reading Award, pictured at the top, that recognized him for Outstanding Reading Ability.
I realize this is more like a “participation award” but the hubby and I were nonetheless delighted.
We excitedly showed T and we read the message on the award word by word, with proud smiles, and told him how awesome he’s been at working hard on his reading.
I wish I could’ve taken a picture of T’s face but then I would’ve have been able to just simply enjoy the moment like I did. How his face slowly relaxed into a proud beaming smile.
It was a short lived but genuinely pure and proud look on his face, and an image and a feeling that I have tattooed into my mind.
For our first roadtrip with an 18-months-old T, we naively thought we’d do a 15-hour overnight drive to New Brunswick.
After a day at work, we headed off at 8 pm.
That was how the hubby and I used to roll. We did the long drive to his parents’ cottage overnight, taking turns, drinking lots of Coke.
For the first three hours, it was smooth sailing. T fell asleep. Then at 11, near the Ontario-Quebec border, he woke up screaming.
He cried throughout the night drive through Quebec – my shift – and I thought about driving into a ditch to end the torture. Then when the sun was rising, he passed out for the final 5 hours.
It was painful to live through but it was also a great bonding moment.
Now that T is 6, we’ve since learned to leave during the day for our long drives!
There are so many fun summer roadtrip memories and I’ve been thinking about them as the days get longer and the weather teases us with hints of Spring.
I’ve been dreaming about roadtrips, because there’s only so much of “Which window am I going to look out at today?” that I can take.
The hubby and I are feeling optimistic we’ll get to venture out this summer. But we know it’ll be different again. We’re likely not able to visit his parents again until we’re all vaccinated.
So our plan is to stay within Ontario and we’ve already mapped out an itinerary.
We think local travel will be popular this summer, so we will reserve our accommodations soon – with free cancellation, in case there’s another lockdown.
It felt fun and hopeful to look back at roadtrip memories.
That joyful feeling of anticipation in the days leading up to departure. That moment of logging off work. That excitement of picking T up from daycare and he knows that adventure awaits.
We always start our roadtrips with a family selfie in the car. I love looking back at them, because they capture the raw happiness we all felt.
Summer roadtrips are usually about visiting T’s Grammy and Grandad at their cottage in a small Acadian town in New Brunswick.
T absolutely loves it there because there are vast areas of sandy beach for him to run on.
He loves getting wet and muddy.
Our entire family always sleeps so well at the cottage with the windows open; the cool salt water breeze calms us down.
The summer after our first roadtrip with T, we started to add a second destination on our way to New Brunswick.
In 2017, we did a 3-day detour in beautiful Nova Scotia, taking in the stunning views at Peggy’s Cove…
… and historic Lunenberg, visiting a retired colleague at her century-old home.
In 2018, we did a 3-day detour at Quebec and our wonderful memories included a day hike at stunning Canyon Sainte-Anne…
… and visiting Old Quebec City.
Last summer, we had planned to visit New Hamsphire in the United States on our way to the hubby’s parents, but alas, it was not meant to be because of the pandemic.
But we ended up exploring Northern Ontario for the first time. We were so blown away that we look forward to visiting favourite spots this summer, while venturing into new spots that we missed last year, like Bruce Peninsula.
Reminiscing while planning this summer’s roadtrip has made us all excited. It gives us something to look forward to with optimism.
One time, after I responded to T’s tantrum in not-the-most dignified way, the hubby asked, “So how’s that positive parenting going?”
As I chopped vegetables, I told him to leave the kitchen or I was positively going to stab him.
There are countless resources that describe positive parenting in great detail.
I like Kars4Kids’ Parenting’s definition, which describes positive parenting as “focused on developing a strong, deeply committed relationship between parent and child based on communication and mutual respect. Positive Parenting focuses on teaching children not just what but also why. Positive parenting means training children toward self-control.”
The websites describes three components to positive parenting:
Rules and consequences are laid out, discussed often, and followed through.
Parents focus on helping children internalize discipline, rather than obey orders based on fear of punishment, in order to develop self-discipline.
Parents use active listening to understand children’s thoughts. This allows parents to correct misunderstandings or mistaken links of logic.
Two years ago, I took a free three-part positive parenting course offered by Surrey Place.
These courses and resources you can find online provide fantastic advice. But as I always say, theory vs practice are two different things.
When you’re in the heat of the moment, it’s hard to think, “OK, what page of the positive parenting manual are we at now?”
The hubby and I try to approach positive parenting from a few angles:
Listen and empathize.
When T has one of his moments, I try hard not to respond right away but take a deep breath and ask him what’s going on.
Even when he responds in a grumpy way, “I am mad at you, because you are…,” I consider that a huge win. I can work with that.
Pick and choose your battles.
It’s important to teach kids about self discipline and to follow through on consequences, but these concepts are hard to grasp for kids with T’s prognosis.
So we pick and choose our battles. Some things are just not worth becoming the hill to die on.
Remind him he is loved.
We lose our patience with T quite regularly. But I always try to explain to him why I get impatient or lose my cool. Most importantly, I remind him that even when I get mad, I love him.
We want T to develop a positive inside voice.
I’m always mindful of the expression, “Garbage in, garbage out.”
The hubby and I are aware that if any kid hears enough times they are bad, they will internalize that self concept and develop that negative internal dialogue.
We try very hard – and don’t always succeed – to choose our words carefully in how we respond during the most trying times.
Ask for support.
The hubby and I are blessed that we work very well as a team. I know when to step back and let him take over and vice versa.
We’re very lucky to have amazing supports from school, daycare and community services. We’re not shy to ask for advice – as they are so helpful.
Be kind to yourself.
I’m on private groups for parents with special needs kids. I empathize so much with their touching and often gut-wrenching stories.
I sometimes wake up in the middle of the night and think to myself, “I wish I could’ve responded to that situation better.”
And I remind myself to let it go. Tomorrow is a fresh start!
With T back in school, it’s been like night and day how much less stressful things are.
It’s been a sobering reminder that kids are emotional sponges and pick up and respond through their behaviours to the environment.
It was a good reminder that despite how trying it can be sometimes, to stay the course and keep it positive. Because positive begets positive.
And if you slip up, oopsie daisy, move on.
The hubby does the morning school drop off but I did drop off this past Monday, because I had to take Ma to a rehab appointment afterwards.
As we neared the school, I wished T an awesome day at school and I told him I love him very much.
He replied, “I already know that. You love me to the moon, to the universe, and back.”
I smiled. Sometimes, I’m never sure if our hyperactive hard-to-focus T is listening.
So it’s comforting to know this is one positive and genuine message he has internalized.
A rainy day is nature’s way of telling family to slow down and savour each other’s company.
We’re lucky T usually doesn’t wake up till 8:30 on weekends. But today, he got up before sunrise.
He came into our room with cheerful pep.
“Oh my God, it’s so early. Go back to bed!” I said, not even trying to mask my horror.
“But I’m hungry!” he said.
I sighed. Why did he have to play the “you need to feed me” card?!
The sky was dark. I dropped bread into the toaster and started the kettle for my coffee. It was a double dose of coffee this morning.
T watched Mario and Luigi videos on his tablet while I sipped my coffee, looking out at the rain.
After breakfast, T asked me to play. His favourite game right now is to pretend he’s Mario and I’m Luigi – and to play Floor is Lava in our family room.
He picked up the sofa cushions and threw them randomly on our lava orange 70s carpet.
There really wasn’t much point to this game but T finds great enjoyment in it. He laughed a lot as we circled the family room again and again, stepping on cushions to avoid the lava.
Afterwards, I made popcorn and we enjoyed a movie together, Cars 2.
I admit my favourite parts were whenever an exciting or funny scene came on and T turned to look at my reaction. I pulled him close to me every time and kissed him on his head.
Afterwards, he asked me to play the tickle monster, which consists of me chasing him around the house to tickle him.
The rain eventually stopped and the sun came out. It was a beautiful sunshine.
The temperature rose to 7 degrees which meant the slushy snow started to melt.
But T had a loving stable first year of life with just one foster family – adopted children often go through multiple homes before finding their forever home (and sometimes not!) – who were just incredible.
I was also blessed to take a 30-week adoption leave and spend those key months building a bond with T. How I miss those early days.
I would say that attachment was, for the most part, not a big issue for us but there was certainly a period for me of feeling insecure as a parent.
When T was 2, about a year into living with us, we went through a period where he went back and forth in favouring Daddy (the hubby) over Papa (me).
Not that it was ever a competition, but I’d be lying if I said that it wasn’t nice or enjoyable when I was the centre of his attention.
Vice versa, it was never fun when I would try to console him, pick him up, carry him, or play with him and he’d scream loudly, “I want Daddy!”
It was the absolute worst when it was always in public or in the company of family and friends.
I remembered feeling so annoyed whenever my mom would make comments like the hubby seemed like a better parent. Again, Asians have that no filter bluntness!
It is a healthy and normal part of a child’s development to favour one parent or another.
Over time, those insecurities proved to be silly, because there is no doubt now in the hubby and my minds that T loves us and is securely attached to us both.
The nice thing about a child’s love is that it doesn’t have to be the same with each parent.
I often think how wonderful it is that he has and will continue to develop unique relationships with the hubby and I.
The hubby is who he likes to build things with and goes to fix his things, who he rough houses with, who he specifically likes to push him on swings, who he enjoys candies and sweets with.
I am the go-to for help with school work, to read books with before bedtime, who takes him to the pool, and pretend play in forts with as his imaginary Paw Patrol friend Everest.
The best parts are the favourite activities we enjoy as a family – like playing chase, the four hand tickles, walks around the neighbourhood, nature hikes, summer road trips and Taco Bell nights.
Fast forward a few years, we now appreciate our own time and space more than ever, especially during these pandemic days.
We desperately crave those early days when T would tell us he wants the other parent… for like the next week! The irony!
And sure enough that day in the guest room, T found both the hubby and I in my preferred hiding spot.
He climbed up on the bed and plopped himself right in between us.
Soon enough, T found himself laughing and cackling in the middle of the four hand tickles.
So our kindergartener is done with carrots and said as much during lunch at school!
T had a great first week back at school and we hope the momentum continues.
But on his first day back, we got a note in his daily log that he dropped the F-bomb after he opened his lunch and got frustrated we packed carrots after he said he didn’t want them anymore.
His child and youth worker heard the incident and put him in timeout for five minutes.
The hubby’s eyes widened when he read the log and told me about it as I chopped vegetables.
“He must really not like carrots,” I said and wondered if I should pack a bar of soap with his lunch the next day.
The F-word was the bane of our existence last year. He picked it up from a kid in his class and although he didn’t know what it meant, he knew it got a reaction out of people when he said it.
Our behaviour therapist advised the best response is planned ignoring. Thankfully, we haven’t heard the word again since last Spring nor have we heard it again this week!
To be safe, it was cool cucumbers for lunch for the rest of the week!
And I’ll probably wait a bit before I introduce Brussel sprouts. Who knows what kind of a verbal reaction that’ll get out of him!
Our T is a very picky eater.
I miss the days when he’d eat something like this!
I know it’s not uncommon for kids to be picky eaters, special needs or not.
In T’s case – and for other kids with similar prognosis – I wonder if it is a taste, smell, and/or texture issue. I’m not sure!
I miss the early toddler days when we could just shove anything in his mouth.
These days, all he will eat is toast. He’ll gladly eat plain toast for breakfast, lunch and dinner. Sometimes, he’ll tolerate butter and if he’s adventurous, he’ll have jam. No peanut butter or deli meat though!
He’ll eat instant noodle ramen without the broth or spaghetti without sauce.
Don’t even try meat. There was a time when I could pulverize ground beef into pasta sauce until it’s unnoticeable, but those days are behind us.
There was a time when he loved to eat cheese and yogurt and that’s where he got his main source of protein. Thankfully, he still drinks milk.
He loves fruit – all kinds of fruits, so he gets his main source of vitamins from fruit as well as his daily multivitamin supplement.
The only vegetables he’ll eat are carrots (not anymore), cucumber and corn on the cob.
So the hubby and I resort to giving him a bottle of Pediasure – or vanilla milk as T calls it – once after breakfast and once after dinner, so he gets the key nutrients each day. Boy, do we ever feel judged when we tell people about this!
T has very slowly become a bit more willing to try meat. He went through a recent phase of wanting protein-rich eggs every day, but he’s over them.
He loves his McDonald’s nuggets and chicken tacos from Taco Bell. We try not to do fast food too much but we also recognize it means he’ll eat “meat” and something other than toast.
As the hubby points out, there’s lettuce and tomato in a taco. So there you go – judge away!
I long for the day when T can have an adventurous love of food like the hubby and I.
It’ll be fun to share our love of food with T one day – not to mention, it’ll be nice to not have to prepare two different meals!
The hubby and I like to explore all kinds of cuisine and we are lucky to live in a part of the city that is very diverse in cuisine and the prices are cheap compared to the downtown core.
During the current lockdown, we look forward to every Saturday night being a night to get takeout and try a different restaurant.
It’s a nice break from having to cook and to eat our own cooking.
It’s also a nice way to support local businesses during these challenging times.
Some highlights from the last few weeks included Caribbean…
Jerk chicken with fried plantains. Don’t tell T about that f*cking carrot!
… Indian…
Butter chicken roti.
… And last night, we tried Malaysian.
Curry Laksa.
I’ve also been cooking a lot to pass the time and as a wellbeing and therapeutic exercise.
I recently made a Hong Kong style Tomato Beef on the Instant Pot that was a hit with the hubby.
Every time we have these meals, we always ask T if he’d like to try some.
If there was an award for false advertising, I’d give it to this web app that claims to teach kids how to write with pure ease.
Handwriting Without Tears was one of the tools that was part of T’s junior kindergarten virtual schooling last Spring.
Cute lessons and activities allowed kids to practice handwriting by tracing letters and numbers on a touchscreen.
As we joked with T’s teacher last year, the daily activities were anything but without tears.
T always lifted his finger off the screen before the app signaled the letter or number was traced. So it did not recognize T as having completed the task. Then asked him to repeat it again.
Cue the ocean of tears and deep valley of sorrow.
It got to the point where I refused to do the daily exercises with T and told the hubby he had to do them or one of us was going to end up dead.
Like many kids with similar prognosis, T’s fine motor skills are a work in progress.
He never showed much interest, focus or care to write or draw.
We know it’s an important skill to develop as he heads into Grade 1 next year, so we made it a goal to work on it this school year.
His Child and Youth Worker provided great tips and resources, which we’ve applied.
We practice writing and drawing with a crayon or marker, because they are thicker than a pencil and so they’re easier for him to grip.
I sometimes write out words in pencil or pen and have him trace over them.
His amazing Child and Youth Worker bought him this handwriting book, with laminated pages that T can practice repeatedly with using dry erase markers. We similarly practice with this.
We also got him sheets of paper with guided lines so T can get support around writing upper and lower case letters to proportion.
Most importantly, we try to have fun and give him time to have freeform drawing – with zero expectations, zero pressure and zero tears.
He really enjoyed the weekly art classes during the recent six weeks of virtual schooling!
We got a nice message from the school this week!
So T is back in school this week – and I could not have shoved him out the front door any faster on Tuesday morning!
Jokes aside, the first three days have been good so far. Fingers crossed we end the week off on a high note tomorrow!
On Wednesday, I heard my phone ping repeatedly with message notifications from T’s child and youth worker while I was on a work call.
I felt a bit anxious, because why would she be messaging me during the day.
Thankfully, it was good news!
She was excited to share that T did a great job on practicing drawing and writing on his whiteboard.
She wanted to share the news with the hubby and I because it was some of the best drawing they’ve seen from him, he was focused and they noticed an improvement in his work.
And this just truly made our day. I paused everything I was doing with work and went downstairs to share the news with the hubby.
It was handwriting tear-worthy moment but this time, they were near tears of joy.
His handwriting and drawing skills still need lots of work but it was a nice boost to our morale that T seems to be headed in the right direction.
Raising explosive children like T is hard but ultimately rewarding.
One of my favourite verses in the Bible is 1 Corinthians 4:13 which states that “Love is patient, love is kind… it is not easily angered, it keeps no record of wrongs…It always protects, always trusts, always hopes, always perseveres.”
It’s the belief that love is unconditional.
In T’s trying moments, I can tell you I ain’t reciting feel good Bible verses. Rather, I’m praying for restraint not to strangle him. I’m calling to heaven to exorcise my hell spawn.
The thing with T that I want everyone to know is that his great moments far outnumber his explosive moments. He is such a bright, funny, caring, gentle, sweet boy and he tries so so hard.
I’m always mindful to point this out, because I don’t want people to form a certain impression.
But the thing with impressions is that people remember the explosive moments.
It takes a real special person to see beyond the explosive moments.
In our journey with T so far, we’ve been blessed with these special people. So it hasn’t been all bad!
Remember, it’s Brain Not Behaviour.
A Valentine’s bear he drew during art class this week.
One virtual schooling moment I can now laugh at was during virtual gym class.
T’s teacher was teaching the class about mindfulness to help calm their inner “Angry Beast.”
T was off camera having a full-on meltdown. He was screaming, pushing chairs down to the ground and yelling at us to shut up because we kept encouraging him to participate.
I looked at the hubby and joked that we should go on camera and turn on our mics so the class could see T getting an A+ for his angry beast.
FASD is a spectrum so every individual is affected differently. But there are commonalities.
For T, it manifests in hyperactivity, difficulty in focusing, challenges with regulating his emotions and extreme impulsivity.
In the past few months, T has started to have explosive moments of rage.
A little thing can set him off and he’d go from 0 to 60 in seconds, often times screaming loudly and storming off into his room. Doors are slammed, followed by intense bursts of screaming.
He is often able to calm himself quickly but just like a real explosion often only takes seconds, T’s moments leave behind emotional debris.
For an already stressed out family dealing with the challenges of virtual schooling, working from home and lockdown measures in a pandemic, T’s moments throw our day off track.
I do not always react in a calm or measured way. I’m trying to do better but we’re all human.
One of the most valuable lessons I’ve learned – and one that I am still trying to internalize – is that it is brain not behaviour.
Because of the effect of prenatal alcohol exposure to T’s brain, there are certain things that will be lifelong challenges for him.
When he has a meltdown, I remind myself that he is feeling overwhelmed and he does not have the executive functioning to calm himself down.
Similarly, when he is having an explosive moment, I remind myself to not douse the moment with gasoline by trying to lecture him. I ride it out, because they are often short lived. Then I try talk to him.
Kids like T are not intentionally explosive. They are triggered by something and they are not wired to deal with it in the same way a neurotypical child is able to.
It is every bit as challenging and hard to deal with as you are imagining!
But we are working on it. We are thankful to have an amazing team supporting T and our family.
It is not going to be easy. I envision harder days ahead. I am prepared to meet people who will make life hell for T simply because they do not understand his condition.
As always, we are taking it one day at a time.
I love our T for who he is.
T is the complete opposite of who I was as a child.
He was probably the kind of kid I would never have hung around or would’ve been irritated by.
But I love him for who he is, even though he can be irritating as hell at times.
And that, I think, is what he teaches me every day about love: to embrace the imperfections and to always persevere and to hope.
We all got into the Valentine’s spirit.
After I gave T his Valentine’s gift, we went out for a morning walk.
The sun was shining so beautifully and felt so rejuvenating and he sled in the park.
When we got home, the hubby was up and shoveling the driveway.
“Happy Valentine’s, Daddy!” He shouted and ran down the sidewalk to him. The hubby scooped him up and gave him a big hug.
When we got inside, I gave T a heart-shaped box of chocolates to give to the hubby.
Then the hubby gave T a Valentine’s card the two of made together at class to give to me.
Then I asked T to give the hubby the card we made together earlier in the week.
I love how his hearts have smiley faces, arms and legs! And lately, he’s been adding very pronounced eyebrows to all his faces!
We relaxed at home all day and then went for a family walk together in the afternoon. I couldn’t get enough of the sunshine.
It was also Chinese New Year, which my family celebrates, so I picked up takeout for dinner.
I always believe the universe sends us reminders to hang in there when we need it most.
What a great reminder then, during a particularly trying past two months, of family and love for T’s adoption anniversary to fall exactly on Family Day, following a rest-filled Valentine’s Day.
T goes back to school next week, bringing to an end our second run of virtual schooling hell.
The last six weeks were so incredibly hard, further amplified by other challenges like Ma’s unexpected health issue.
Meltdowns, daily battles, frustration with getting T to sit and focus, embarrassing moments of T throwing a fit while I’m leading a work meeting.
Nothing says team building like a 5 year old having a full on rage moment in the background and screaming “Shut up, I’m going to kill you!”
But we survived!
As with everything in our journey with T, it is important to look at the big picture.
I choose to focus on the gains T has made. I will celebrate the positive moments, because these are what I look back upon one day with rested eyes.
Our Bright Little Boy
Currently, T is doing well academically. It’s true the hubby and I spent most of the last six weeks playing catch up with him on a one-on-one basis, because it was a fucking nightmare to get him to sit still through a lesson.
But when we got his focused attention – often shortlived – he demonstrated he understood the concepts and completed the work quickly: beginning and ending sounds, counting, simple addition, patterns, graphing, symmetry.
His Amazing Teachers
Those are balloons! Get your mind out of the gutter.
We are so fortunate to be with a school that gets T and supports him. His teacher and dedicated Child and Youth Worker are so organized and structured each day with the same schedule, because routine is so important for kids.
Using tools such as Google Classroom, they made it easy for the hubby and I to follow along and if needed, to catch up with T afterwards if he was unable to sit through a lesson.
Starting in Week 4, the Child and Youth Worker scheduled 20 minute one-on-one daily check ins with T.
While our check ins were not always successful, we’ve had more wins than not.
She did simple activities with him – virtual scavenger hunts were always a hit – and it allowed T to continue that important relationship with her, because she is such a key person in his academic life this year.
Trying Not to Sweat It
The hubby and I really tried our best to not sweat the small stuff, because our family’s mental health was equally important.
As annoying as it was for T to walk away from the lesson or to storm off in a rage and slam his bedroom door because he didn’t want to do the lesson, we tried to take a calm approach and to try again later.
Mind you, this was not always the case. I’ve lost count of how many fights we had with T and how demoralized we felt – especially when we saw every child in his class sitting down, participating and doing the work.
Building His Confidence
The class was asked to make a tree art using whatever they had at home and T created his art using his train track toys. He did a great job but he refused to share his work with the class.
It was very obvious to us from the last six weeks that T did not like to participate in class. He got very testy when we asked him to share and his Child and Youth Worker and I theorize that it’s related to confidence.
So we are working as a team to build his confidence.
The hubby and I often tried to get him to share his work – because he did such great work when he was focused – and the times that we did get him to share, even if it was just a few words on camera, we could tell he felt proud.
I’ve repeatedly told his teacher and Child and Youth Worker that I wished his class – and the other parents – could see what we saw when T was on mute and off camera when he had clear but shortlived focus.
He often shouted out the answer quicker than his classmates and he zipped through the language and math worksheets quickly and correctly.
More importantly, we wish T could see in himself what we see in him. But life is a work in progress and we will get him there!
Finding the Humour and Joy
Drawing is not T’s forte but we’re working on it.
I tried to build his confidence by sharing his work with his class like it was the second coming of Picasso. But T was not having any of it when I asked him to share his wonky looking owl above.
“I’m not sharing it because it looks ridiculous!” He said with a bemused frown on his face. I admit that I burst out laughing.
I don’t want to give the impression that every single minute of the day was painful, because it wasn’t.
Nor do I want to give the impression we’re raising a psychopath. His bursts of rage are very real and are uncomfortable to experience but we are working with him on it and we know at his core and his best, he is gentle, sweet and caring.
It’s just that the 25% of the challenging moments often overshadowed the 75% of the good stuff, because they just consumed so much mental, physical and emotional energy.
But we had a lot of fun along the way too.
I loved our Friday morning art classes – don’t you love the Valentine’s bear I drew this morning?
And really, you gotta laugh at the shit we had to deal with. Like when I stepped aside for 5 minutes to respond to a work email and I looked up at T and he had a banana peel on his head, making funny faces at his class.
You have to laugh, because the alternative is to commit yourself to an asylum.
And I looked forward to the end of each work day when I logged off and T and I went for a long walk in the fresh air!
The Challenges and Potential Are So Clear
The one nice thing about virtual schooling is that it provides parents a rare and up close look at how their children are doing in school and learning, because that world is often separate from us.
For us, it allowed to see upfront T’s behavioural challenges, how easily frustrated he gets when he doesn’t understand something or when he refuses to do an activity, his challenges with regulating his emotions, his inability to sit still and focus on a task for too long. The list goes on.
I worry about how these challenges are going to affect him when he moves on to Grade 1 next year, when it is a less play-based environment and more of a you-have-to-sit-down-and-listen-and-do-your-work.
But the hubby and I are going to take it a day at a time. That is all we can do and there are still 4 months of school left and for a kid T’s age, that is a lot of time for growth still.
Let’s just hope there’s no more disruption, please!
As our final days of virtual learning came to an end this week, I caught T walking around our living room with a marker.
Just a 1/4 of what he achieved the last few weeks!
I asked him what he was doing and he told me that he was putting a check mark on all his worksheets that I had put up on our walls.
I stood there for a moment and realized that we had filled up the two long walls with his completed work and were starting a third wall.
Some times, you get so caught up in the daily grind that you forget to take a step back and see that despite the frustrations, T got a lot done these last six weeks!
And I told him that we were proud of him.
On our last day of virtual school today, I sent his teacher an appreciative note to thank her, T’s Child and Youth Worker and the rest of the school team for how awesome they’ve been.
And she sent back a wonderful note to the hubby and I. I’ve shared an excerpt below:
“… Thank you to both you and (the hubby) for joining us and persevering. I know it was hard during the best of times. (T’s Child and Youth Worker) kept me posted. You are amazing. How easy it would have been to walk away and say T didn’t want to or feel like it. I am truly amazed at all you accomplish with him…”
I teared up when I read it – not because I was looking for praise or an award for doing my job as a parent.
But it felt nice for someone to understand just how hard and exhausting it has been the last few weeks.
I wrote back to express my gratitude and I’ve shared an excerpt of my response below:
“Thank you… your kind words mean a lot to us. The last six weeks have been so so hard… (The hubby) and I really try to remind ourselves to look past the frustration, the meltdowns and his behaviour (which is a result of his brain disorder), because there is such a great kid underneath there with a lot of potential. It’s not always easy, because there are moments when he really pushes everyone’s buttons! … So thank you to you all at (T’s school) for seeing that potential in him – because that is half the battle in helping him achieve it.”
While it was a quiet lockdown birthday, the hubby and I still found a way to celebrate.
When T woke up on his special day, he stepped out to a hallway and staircase decorated with red and green balloons – a colour coordinated coincidence with his beloved Mario and Luigi.
Our dining room – aka space for work, virtual school and eating – was decorated, including a large gold 6 helium balloon, along with two wrapped gifts we promised T could open following his school day.
T was excited all day. Aside from school and bedtime-related meltdowns, it was a great day.
We started the day with a pancake breakfast and ended the day with Taco Bell for dinner and a Mario ice cream cake gifted from his Ama.
Earlier in the school week for language class, T learned about making lists.
Each student brainstormed a list of 7 items that make them happy when they see them.
T came up with a list on his own and I helped him write them down, as he still doesn’t know how to spell, and he practiced his handwriting by tracing over my writing.
Here is T’s list of things that make him happy when he sees them:
1. My family
2. Birthday cake
3. Ice cream truck in the park
4. Stuffed animals and an owl
5. Swimming Pool
6. Presents
7. Christmas tree and decoration
This is definitely our Christmas, birthday and celebration obsessed T. I was surprised Halloween was not on his list!
But most of all, I was so touched he said our family first.
It’s been a very challenging last few weeks, but I see an end in sight with in-person learning resuming on February 16.
Speaking of things that make me happy when I see it. I nearly cried when our Premier made the announcement on T’s birthday!
Every Friday morning, I sit with T for virtual art class before lunch and it’s been quite calming!
Four weeks of virtual learning hell is behind us and it has been so so hard.
Much of the school day is punctuated with meltdowns and battles. But we find a way to get to the end, so we try not to sweat the small stuff.
His teacher and child & youth worker have been so understanding and flexible. They go the extra mile to showcase his work to the class to let him shine and build confidence.
Fridays are more chilled days.
In the 30-minute session before lunch, the class draws a picture by following a short video.
I’m glad T gets to work on his fine motor skills, because he is less developed in this area, because he doesn’t enjoy practicing his handwriting.
Drawing is a fun way to practice skills such as the pencil grip, while flexing his creative muscles.
Every week, I sit next to T and draw along with him. It is important the hubby and I model the behaviour we are expecting.
For our 40th birthdays, the hubby and I gifted ourselves the creation of our wills.
It does feel morbid to think about life after death as we celebrate this wonderful milestone; the hubby last fall and me later this Spring.
But we are pragmatic and recent events have emphasized the need to plan for the future.
We worked with a lawyer with expertise in estate planning and the process was straightforward. We had scheduled this process before recent events and noted the ironic timing.
Creating a will and related documents, such as a Power of Attorney, gives special needs parents the peace of mind that there is a plan in place for your child’s care if anything were to happen to both parents.
For the hubby and I, it all comes down to ensuring there is a plan for T’s care should something happen to both of us.
As the hubby and I know that individuals with FASD, of which T has an at risk prognosis of, often struggle with managing their finances even as adults, we opted to set up a trust for T, to be managed by an executor, instead of giving everything to him all at once.
The last few weeks have been so chaotic with Ma’s unexpected situation and virtual schooling that I was tempted to cancel the lawyer appointment. But we went through with it and now we have peace of mind it’s done.
Cuz I gotta say, if this pandemic doesn’t kill me, virtual schooling will, if it keeps getting extended.
During a recent bedtime, T and I were chit chatting to pass the time before he fell asleep.
I asked T, “Will you take care of daddy and I when we get old?”
He replied without hesitation, “Yes, I will do everything for you.”
Well, that was reassuring. I almost asked him if he could put that in writing.
Pandemic lockdown has restricted travel, but T’s imagination rocketed us to outer space on a quiet Sunday.
All I wanted to do on this afternoon was nap – I feel so exhausted – but T’s endless energy needed an outlet and I always feel guilty about plopping him in front of the tablet all day.
So after starting a beef stew I was meal prepping in the Instant Pot, I decided we were going to outer space.
Then we were now in a vet’s office instead of outer space. His stuffed Dalmatian was now sick because she ate too many vitamins which made her break out in spots.
Such is the life of living with a child with ADHD and the attention span of a squirrel.
Oh… and the beef stew turned out great! An Earthly comfort we can’t wait to dig into soon.
A sick cat gave our little kindergartener a hand-on lesson about what a vet does.
At 12:30 am on Monday, the hubby woke me up and said our cat Kyrie was sick. The hubby had been cleaning up stinky drops our cat had been dripping throughout the house.
With everything going on in our lives, the last thing we needed was a sick cat. The only thing missing was a crashing asteroid or locusts.
The next morning, I felt tense. Our work and homeschool week got off to a shaky start.
Right off the bat, T had a meltdown because we were putting his toys away, so he could be less distracted during school.
We managed to get him to sit for part of language class discussion on “When I Grow Up,” a fun coincidence since I just blogged about this topic.
This time, instead of saying he wanted to be a parent, T told me and I shared on his behalf with the class that he wanted to be a police officer so he can put bad guys in jail!
A few kids talked about wanting to be a vet, which T learned was a doctor that helped animals get better.
The rest of the day felt stressful because it was meltdown after meltdown with T refusing to sit for class.
As always, many tears later, I was able to sit down with him one on one to catch him up on the day’s lessons and to complete the work.
He then asked if he could join the hubby to take Kyrie to the vet.
We had a lightbulb moment to tie this into the morning’s lesson about grown up jobs.
So the hubby walked T step by step through the process of preparing the cat for the vet, including getting the crate out and giving him a calming medicine.
They left for the vet and it was so nice to have an hour and a half of peace and quiet to actually focus on my day job!
They came home with good news. The vet said it wasn’t serious. Kyrie likely chewed on something sharp that gave him an abscess in his mouth that got infected. He got put on antibiotics.
The best part was that the vet put this silly cone on him that makes him look like he’s auditioning for The Handmaid’s Tale.
I couldn’t stop laughing! I’ve always seen photos of animals with cones on but never in real life.
And the cone wouldn’t fit around T’s head. I checked and tried. Oh shucks.
The experience with the vet reminded me that for a child, learning is not just about sitting in front of a tablet or completing worksheets – although these tasks are still important to master.
There are additional ways to learn.
Getting T to participate in something he was interested in – helping care for Kyrie – gave him a good lesson into what being a vet and to care for a sick animal is all about.
After dinner that night, T wanted to pretend play Kyrie’s visit to the vet. He wanted me to be the vet and he wanted to be the cat.
Kyrie’s large crate was still in the foyer and T crawled right in! He didn’t quite fully fit in, but believe me, I had some pretty mischievous thoughts right then and there!
I smiled and replied, “Yes, we’re going back there this summer. I can’t wait to go swimming in the lake again.”
I love that we’ve created these memories with T and that he recalls them with fondness.
When I was in my early 20s and in university, I had many dreams for my future. Being a parent was not one of them.
As I near my 40s, I have to agree with T: being a parent, his parent, has been the best thing about growing up.
I certainly do not always feel this, especially during these recent challenging days.
But during the quiet moments that we are gifted each day, like lying down on a bed and looking at photos together, that feeling rings very true in my heart.
And yes T, I also can’t wait for summer to be here and to create new memories in nature again!
