Christmas miracles come in all forms. This year, it came to us as a wiener.
We’re spending a few days with T’s Grammy and Grandad in the East Coast. We had booked this trip earlier this Fall when the pandemic was in a stable condition and decided to proceed with it.
T is having a great time with the hubby’s family and without the pressure of school, he is in great spirits, albeit a full blown punching and kicking meltdown during teeth brushing last night.
I’ve written many times about what a picky eater T is. But during our first lunch on Wednesday with my in laws, T decided he was going to join us and have a hotdog.
He usually just has the bun and ignores the wiener when we’ve given it to him in the past.
Yesterday, he had two additional hotdogs for lunch and proclaimed that he loves hotdogs.
I don’t ever ask for much during Christmas but this was a wonderful gift to be able to add one more meat item to his food repertoire.
Yes, hotdogs are meat – and you can’t convince me otherwise.
This will join McDonald’s chicken nuggets, chicken tacos from Taco Bell, Pizza Hut pizza, fish maw soup from Congee Queen, and frozen meatballs from No Frills as meats that he’ll eat.
You wish your child has such a refined palette!
All jokes aside, I’m looking forward to having just two weeks of relaxation during the holidays.
I am burnt out from my marathon Fall and am not mentally prepared for the inevitable return to virtual schooling after the break.
My goal this and next week is to vegetate and do a whole lot of nothing. Unless it’s an emergency, I ain’t getting out of my pajamas and house.
Wishing you and all your loved ones a Merry Christmas and Happy Holidays! May you all experience your own wiener miracle!
The Hot Dog song from Mickey Mouse Clubhouse was a long-time favourite in our home.
It was an unforgettable trip across four cities and two states in a beautiful and spiritual country.
As we lament another pandemic winter and the prospect of a return to virtual schooling after the holidays, I’m taking a detour from the daily grind and venturing back to November 2012.
It’d be another 3.5 years before T entered our lives. The hubby and I had just entered our 30s. We lived a frugal life but worked to save up to see the world before we settled down with a family.
We planned an itinerary that started on the Northern end of India and we made our way along the Western side down to the south.
Dehli and Agra
Our first stop was Dehli, India’s capital territory. We arrived at night after a nearly 14-hour flight.
We woke up refreshed and ready to sightsee. Little did we know the rotten egg that laid ahead.
Our Canadian Prime Minister Stephen Harper was doing a diplomatic tour of the city on that very same day. So for security reasons, all major sites were closed!
So we got to enjoy our plans from afar at closed off gates, like beautiful Lotus Temple pictured below. I bet it looks lovely inside too!
But there were other lovely spots to see that didn’t require admission, like India Gate, below.
We weren’t going to vote for Harper at the federal elections. Let’s just say the first day of our trip certainly didn’t endear himself to us!
Our second day was a magical highlight. We drove four hours from Dehli to Agra, home to one of the seven wonders of the world: Taj Mahal.
Built in the early 1600s by Emperor Shah Jahan to immortalize his beloved wife Mumtaz Mahal, this world-renowned mausoleum was truly breathtaking to see in person.
Made from white Makrana marble, the craftsmanship was awe-inspiring to behold.
For example, the black calligraphic text bordering this wall are passages from the holy book of Quran. In all, 22 passages from the Quran are transcribed along the Taj Mahal.
Ever wondered what the back side of the Taj Mahal looks out to?
Or what the view from the Taj Mahal looking out to the main entrance looks like?
On the same day, we visited nearby Agra Fort. The level of detail in the craftsmanship continues to impress me all these years later.
And this is the hubby and I having fun at Agra Fort at the end of a long day of walking.
The hubby works with wonderful colleagues who are based in India.
On our third and final day, back in Dehli, a few of his colleagues kindly showed us around.
Among the highlights included trying out local fast food fare at the mall. This was delicious!
Jaipur
On our fourth day, we flew to Jaipur, the favourite stretch of our trip.
We started with local sightseeing, such as visiting City Palace.
The streets in India seemed crazy to me. Cars, cyclists, rickshaws, and even cows. I don’t think people were following any specific lane. I‘d have anxiety driving over there!
On our fifth day, we woke up at 4 am to head out at 5 am for a magical experience: our first-ever hot air balloon ride.
The hubby and I were the only “young ins” in an all-senior tour group and we were mesmerized as the staff started inflating the balloons.
Admittedly, I felt very anxious as we lifted off the ground. There was nothing saving us if we were to plummet to the ground.
But I quickly set those nerves aside, so we could enjoy this once-in-a-lifetime sunrise experience. The views were spectacular.
Our tour ended just as the city was starting to wake up. We spent the rest of the morning exploring the historic grounds of Amer Fort.
Looking at these photos now all these years later, I couldn’t help but wish for a day when we could take T on these adventures with us.
We just need to get him – and us – to survive a 14-hour flight first without having a meltdown!
Later that afternoon, we walked around the city. On our way back to the hotel, we decided to try taking a rickshaw just for the experience.
I felt like the poor man was going to have a heart attack cycling our two fat asses around. So the hubby asked him if they could switch!
The man sat on the back next to me while the hubby cycled us through the busy streets. It was such a memorable experience. I still smile about it all these years later!
On our sixth day, we spent the afternoon at an elephant sanctuary.
I don’t regret and quite enjoyed the experience of the elephant ride. But looking at this photo now, I will not be doing this again as elephants should roam freely rather than carry us around.
We had many delicious meals in India but this home-cooked lunch, prepared by the mother of the sanctuary owner and enjoyed at his home, was the highlight.
It was such a simple meal of spiced cauliflower and sautéed okra. But I still think about this delicious hearty meal all these years later.
Mumbai
On our seventh day, we flew to Mumbai. The densely-populated metropolis, with its tall buildings, was a stark contrast from the previous three cities.
We spent the day with another of the hubby’s good colleague and friend, who was very hospitable and showed us around.
One of the places we really wanted to visit was Dobhi Ghat, also known as the public laundry.
In this open space, the locals wash and dry the linens and laundry from hotels and hospitals.
The hubby’s friend was very amused that we wanted to see this place. There weren’t official tours nor was it a tourist attraction. But we were able to convince one of the staff to give us a tour.
It’s hard to believe by looking at this photo, but these fire-heated barrels of water wash hotel linens and laundry – quite efficiently!
We were in Mumbai during Diwali, the annual holy festival of light celebrated over five days.
The City streets were alive with bright colourful decorations and the joy was infectious.
These were the colourful powder used to make a rangoli – more on this later below.
We spent the following day on Elephanta Island, an hour-long ferry ride from the city.
The island is home to ancient caves that were quite a marvel to roam around.
If I looked like I was going to pass out, it was because it was super hot and humid!
At the end of the long day, we took a nice sunset stroll along Marine Drive, the waterfront.
We spent the rest of the day lounging at our hotel.
The staff had prepared a beautiful rangoli by the lobby in celebration of Diwali.
Fireworks began around 8pm and it was unlike anything we had experienced before. They just went on nonstop all night all across the city.
When we woke up the next morning, there were still fireworks going off!
Goa
After a week of intense sightseeing, we planned a restful three days at a beach-side resort in Goa.
We didn’t do a whole lot during these three days and it was wonderful.
We spent a lot of time strolling along the beach. There was a local stray dog, who seemed injured, and the hubby has a soft spot for animals.
The two quickly formed a bond and the dog always sought the hubby out during every outing. I still smile at this photo all these years later.
Kerala
Our final stop was Kerala, a state in the South-Western side of India, with nearly 600km of the Arabian Sea shoreline.
These were fascinating fishing mechanisms set up by local fishermen. They let us try operating them and it was quite cool seeing them in action.
Our main motivation to visit Kerala was when we learned about their houseboat tours.
This was the houseboat the hubby and I rented for the day.
This lunchtime feast, enjoyed as the boat cruised along the scenic river, was amazing.
As we enjoyed the views on our last day in India, I felt super thankful for this once-in-a-lifetime experience in this beautiful and spiritual country.
We were at a phase in our lives where we were eagerly anticipating parenthood. We didn’t know at the time that it would take another 3.5 years before T arrived.
Truthfully speaking, I do miss the freedom of these days, when global adventures were more accessible and affordable!
These days, an affordable Indian adventure would be ordering chicken biryani takeout – which by the way gave me food poisoning for two days last week! Fun!
It’d probably be a huge effort and stress to take T on such an adventure. But I do dream about it. It’ll have to wait until he’s much older, but I look forward to the day to being able to do so!
Fans of long-running reality show Survivor will be familiar with the term “dig deep.”
It’s what host Jeff Probst says to motivate contestants to tap into their inner strength to get through a physically-grueling challenge.
The last few weeks have been very challenging with T at home and school. We’re not sure if it’s the medication change, weather, full moon – or aliens – but it’s been a struggle.
T’s CYW recently shared that T told her that he finds school hard. It broke our hearts to hear him have these thoughts at such a young age.
But I’m also not surprised. Grade 1 is different from kindergarten. It’s less play based and more sit-at-your-desk and work environment.
This may seem trivial but for a kid like T, this is a big deal. I have no doubt he’s acting out partially because of feeling overwhelmed by the increased pressure and expectations.
I’ve said this before: T is smart and has great potential. We need to help him develop skills to manage his emotions and to adjust the environment to accommodate his learning needs.
I believe that every living thing – special needs or not – is motivated by something.
Part of channeling T’s motivation into something productive is figuring out what his preferred activities are.
For starters, we know T is a hands on learner and curious. Last week at school, they played with sewing machines and that was one of the better days he had. Look at that focus!
About two months ago, his teacher introduced extra homework. Every Friday, a blue duotang would be sent home with extra worksheets to help students keep up or catch up.
She made it very clear this is optional and not mandatory. But we love the extra work!
For me, what motivates me is to help T keep up his learning. We can’t replicate the school environment at home, so I don’t worry about the teacher’s goal to help him do his work independently in a busy classroom.
It’s an important goal for sure, but our focus at home is helping him keep up with the concepts.
This motivates me immensely, even though I’m aware that homework sometimes pushes kids like T over the edge.
We took a break from extra learning two weekends ago after a very challenging week.
I am well aware that one’s mental health – both child and parent – is important.
But we picked it up again this recent weekend and I tried to approach it from the perspective of finding that carrot stick to dangle in front of T.
T loves to play forts so I told him if he completed his assigned work for Saturday, I’ll build the biggest fort he’s ever seen yet.
Sure enough, we slowly but surely got through the work.
And check out this massive fort we made!
Here’s the entrance below, stepping into the foyer. To its immediate left is the living room and to the right is T’s bedroom.
And here’s the living room. His stuffed pets all look quite hungover from a night of partying.
Here’s the living room viewed from the backyard – with the staircase to the rooftop at the far back.
And here’s the rooftop with the hot tub. T and I hung out here for quite some time that morning.
On Sunday, we repeated the same ritual and I used Christmas shopping as the motivation to get him through the work.
Over the two mornings, T plowed through 10 pages of homework. There were resistance and whining but we got through it.
I wish T could always have this same focus, especially at school. But I will take the wins, big and small, where I can.
Some days, I feel like I’m digging my own grave in the moments when I feel so frustrated.
But moments like the past weekend remind me of what motivates us to dig deep: our little lovable pest, T.
If the truth sets us free, would you still tell it if it means upsetting someone?
Several years ago, I was on a crowded train and the two women standing next to me were talking about drinking and pregnancy.
One of them said she knows doctors who’ve said it is ok to drink during pregnancy and the other woman agreed with her.
I was horrified, because by that time, I was living the reality of parenting a child who was prenatally exposed to alcohol and had a prognosis of at-risk FASD.
I could not muster up the nerve to speak up, as I did not want to offend them.
I often think about that moment with a tinge of regret, because what if I could’ve saved a future child from a lifelong disability.
This past Saturday, I had a do-over of sorts when the hubby and I had a Zoom call with the in-laws of a family friend who were looking to adopt and wanted to hear about our experience.
I was very mindful that for heterosexual couples, adoption is often – not always – a last resort after trying to naturally conceive.
So the hubby and I wanted to be compassionate, encouraging and informative but to also not sugarcoat important details.
We walked through the adoption process, including the lengthy forms and home study interviews, and we were upfront that it is not a first-come, first-serve process. It could be quick, it could take many years (like ours) or it could never happen at all.
We spoke fondly of the many happy memories and we were frank about the challenges, including dealing with issues of loss and trauma.
We were upfront about FASD and shared our daily challenges.
It was interesting watching them nod their heads, smiling at times, looking pensive at others.
I felt we provided a balanced and truthful picture of what lies ahead and I hope it will help them make an informed decision.
We ended off on a positive note: I told them it was ultimately a rewarding experience, despite the challenges.
For me, the conversation was also a wonderful walk down memory lane, stirring up many happy memories, like our first camping trip when T was just 1 year old, pictured on this post.
The past few weeks have been so challenging and the difficult moments seem to continue to pile on top of one another.
Having this opportunity to share our journey with others – and to take a step back and see how much the hubby, T and I have grown and travelled together in this crazy journey called life – reminded me what it is that we get up everyday for and to never give up on it.
Pork bone soup is one of my comfort foods and I finally took it off my cooking bucket list.
Our previous home was located in a Korean community. It was there that I discovered gamjatang at Owl of Minerva.
This restaurant is open 24 hours, so before T entered our lives, the hubby and I often went to satisfy 1 am pork bone soup cravings.
Korean culture has experienced a global renaissance – from “Parasite” being the first foreign language film to win Best Picture at the Oscars to the record-breaking success of the Netflix series, “Squid Game.”
The hubby introduced T to K-Pop. This catchy song below by BlackPink was on rotation during this summer’s roadtrips.
I love that T is growing up in a city with diverse cultures and has classmates from all around the world. This will enrich his life.
When I was a bit older than T is now, I invited a friend – who was Greek – for a sleepover and Ma made chicken adobo, a Filipino meat dish cooked in heavy soy sauce and vinegar.
I remember feeling very self conscious as I watched his curious reaction and had wished for pizza to feed him instead.
As an adult, I crave and proudly share my culture’s cuisine with the world.
I love discovering other types of cuisine too. While T is a picky eater, we expose him to them so he’ll get used to seeing and smelling them; hopefully, tasting more one day too!
Korean pork bone soup is a dish I’ve been wanting to make forever.
As people who cook will tell you, the process is often more rewarding than the end.
I enjoyed going to the Asian supermarket to hunt down my ingredients, like “Asian cuts” of pork neck bone and Korean condiments such as gochujang (chili pepper paste) and doenjang (soybean paste).
I love the meal prep process, when I first lay out the ingredients in a colorful spread.
It’s akin to the satisfying before and after of fixer upper renovation shows.
I first boiled the pork neck bone for 5 minutes to remove excess fat and then rinsed them in cold water.
I then laid the soup stock into the Instant Pot: 3 ginger slices, 6 cloves of crushed garlic, 4 stalks of green onion (white part), 1 onion quartered, 2 bay leaves, 2 tbsps of doenjang (soybean paste), 2 tbsp of fish sauce and 1 tbsp of dark soy sauce.
I layered the pork neck bone on top, added 7 cups of water and pressure cooked on high for 22 minutes.
While the Instant Pot then naturally released for 15 minutes, I prepared a mixture of 6 garlic cloves minced, 1/3 tbsp of ground black pepper and 2 tbsp of gochujang (chili pepper paste).
I opened the Instant Pot and then scooped this mixture into the boiling soup.
I added in potatoes (halved) and Napa cabbage into the soup and let it boil for 20 minutes, so the broth would thicken.
The hubby dug out a black ceramic bowl from storage in our basement, which we hadn’t used in many years.
I served my portion in this bowl and it looked like legit restaurant-served gamjatang!
While it wasn’t Owl of Minerva level, I was very happy with how it turned out! The meat melted off the bone.
Even the hubby, who normally dislikes meat on bone, enjoyed his dinner and complimented the taste of the broth.
It was a satisfying journey and outcome – and I felt better again.
As we enjoyed our soup, T calmly enjoyed a panda-shaped chocolate popsicle. The packaging was in Chinese text, so I’m counting that as exposing T to ethnic cuisine!
After the up-and-down week we had, it was a wonderful way to spend quality family time on a cool autumn Saturday evening.
Having a sense of humour about when things do not go as planned is generally one of my instinctual responses in life.
Dealing with loss and feeling like you’re failing is part of being a special needs parent.
In the last few weeks, it’s been harder to find levity during the challenging moments.
We’ve been having very challenging days with T at home and school.
It’s beyond the usual hyperactivity, difficulty focusing; it’s escalated to refusing to do his work, disrupting class, and even talking back to teachers.
Learning to deal with moments that don’t go as planned is part of life. I think everyone can benefit from failure. It gives you perspective.
But as a special needs parent, that feeling occurs quite often.
Not because it’s the child’s fault. It isn’t anyone’s fault. But in the hardest moments, it can feel like you’re failing your child.
But really, it’s about the fact that this world and its structures, norms and expectations disadvantage neurodiverse people.
Earlier this week, my mind randomly recalled this wonderful acceptance speech Halle Berry made when she won the Razzie Award.
I’m using the word “won” very loosely here, because a Razzie is the antithesis of the Oscars, given out to the worst in movies.
In 2004, two years after her historic Oscar win, Halle Berry won Worst Actress for Catwoman.
Instead of pretending this never happened, she did what no other recipient in Razzie history had done; she actually showed up to accept it.
Needless to say, the small crowd of film lovers – the Razzie voting body – went wild.
Berry’s clever and tongue-in-cheek speech was a hilarious masterclass of how to turn a shitty moment on its head, have a laugh at the absurdity of life, and leave with your head held high.
I had such a laugh watching this clip again and it made me feel better. Laughter really is the best medicine.
We’re still in the trenches with T, but we’re showing up to try to turn these Razzie moments around.
The hubby and I had a perfectly-timed call scheduled yesterday with T’s behaviour therapist – we meet every few months.
We also consulted with his developmental pediatrician and are adjusting his medication.
We’re continuing to strategize with his CYW.
I’m not sure how the next few weeks will unfold but I am reminding myself that we will get through this. Focus on the big picture.
I did a rare school drop off yesterday morning and T requested Britney Spears’ “Oops, I Did It Again” to play in the car.
I chuckled, because it could not have been a more perfect song choice to describe T at times.
And that unexpected moment of laughter was a great pick-me-up.
Circles appear as symbols of power, movement, change and balance in our lives.
Some see circles as a symbol for the wholeness of self, timelessness, infinity and God itself.
Circles represent the passage of time. A year is a full orbit of Earth around the sun; hours pass in a circular motion around a clock.
The world moves through circles: the wheels on bicycles, cars and trains; the wheels that steer planes and boats.
Life itself is a circle, as Disney’s “The Lion King” tells us through the song, “The Circle of Life.” The source of life on Earth, the Sun, is circular.
Geometrically, all points around a circle are equal distance to the centre, representing balance and equity.
I thought about this last point when I attended my first learning and sharing circle last week for caregivers of individuals with FASD.
It was a free webinar that I learned about from our resource support at Surrey Place.
There were about 10 caregivers and it was moderated by two individuals, one of which is an FASD expert who is also an individual with FASD and a caregiver to kids with FASD.
Caregivers had an opportunity to ask questions and share their stories.
It was eye-opening to hear the stories, which I will not share details of out of respect, other than to say it was common challenges I read about in other forums, such as mental health and run ins with the justice system.
So in a sense, this was a support group.
They meet every two months and I decided to participate in future sessions. It’ll be good to connect with and to learn from others going through a similar journey.
While the stories were hard to hear, and in some ways made me anxious about T’s future, it did feel comforting to be in a circle with people who just get it.
The circle reminded me about the importance about being kind to myself, the hubby and most importantly, to T. We’re on this journey together – all the ups and downs of it.
Speaking of things circling back again, we had our first snowfall of this season last Sunday – a lot of it!
T woke up, looked out the window and came into the room to tell us there’s snow on the ground.
Shortly after breakfast, we put on his snowsuit for the first time this season and he took his sled out to the park.
As he went down the hill, again and again, I thought to myself that I wanted to pause this moment in time and just enjoy it – as the world continued to circle around us.
My six year old and I started a new bonding ritual: Friday night grocery runs.
After a long week, all I wanted was my weekly 90 minutes of freedom: going to the supermarket.
“Oh, can I come?” T asked chirpily.
“Oh, fuck no,” I said to myself in my head.
But I simply said, “No.”
“Please!” He begged and gave me a big hug, pulling out the charm offensive.
“Ok, fine. You can come,” I said.
He cheered. He was practically bouncing off the walls by the time we walked out the door.
In early days of parenting, learning about T’s prognosis and experiencing his hyperactive impulsive behaviour and meltdowns often made me anxious when we went out.
But I have to say he’s mostly good now with going out and it’s a blessing I don’t take for granted.
I am strategic about the places we go out to. He’s a kid who’ll sometimes start doing half cartwheels and front rolls at a restaurant just because he can’t help himself.
A supermarket is a place I often avoid with T, because I know he can’t resist wanting to touch everything and I dread the thought of chasing him up and down the aisles.
But there’s something appealing about getting T into the habit of doing groceries with me.
It’s a life skill we can nurture and help teach him about responsibility.
It’ll remind him that things cost money and to value the food we have on our table.
It’ll hopefully open his eyes to the variety of food options and encourage our picky eater to widen his palette.
When we arrived at the parking lot, I gave him my usual before-we-enter-a-store talk.
“Please don’t do anything that’ll make us go viral on the Internet for the wrong reasons,” I said to myself in my head.
Instead, I reminded him to not touch or grab anything without asking.
T is getting to be quite big, now at 4 feet. But I still plopped him into a cart and he was happy to be pushed around.
My mission was to go in and out as quickly as I could.
I have to say that T did a great job.
He was like a tour bus driver, loudly narrating and pointing out all the vegetables and fruits in the produce aisle to nearby shoppers.
“Oh look, brocoli!” …
“Oh my God, is that a coconut?!”
I asked him to make decisions along the way, like which type of pasta, ramen flavour, cereal, snack and fruit to buy.
I also handed him the non produce items to sort onto the cart. He created a big messy mountain on one corner of the cart, as expected.
He clung onto his Gluten free Oreos.
“You’re going to have to give that to the man now,” I said when we arrived at the checkout.
He watched everything get scanned and then finally gave his Oreos to the cashier.
He has no idea what Gluten free means, he just liked the white packaging, different from the usual Oreo packaging.
We were in and out without incident and I have to say that I enjoyed his company.
When we got to the car, I gave him several high fives, genuinely delighted at this bonding time that we spent together.
“Do you want to do groceries with Papa every Friday?” I asked, because I’m clearly a masochist who needs a sanity check.
After tidying up the kitchen, I had an out-of-body experience.
Unbeknownst to me, while I was clearing the dishes and emptying the garbage bins, T tidied up the entire living room.
The tornado debris of his Hot Wheels and blocks were all cleared into bins. I had almost forgotten we had brown carpet underneath.
When he started to vacuum, first time ever, I thought, yup I was unconscious somewhere and this is the afterlife tempting me to step towards the white light.
The next morning on Sunday, after breakfast, T looked out at the fall leaves in our backyard and declared that we should rake them up.
It confirmed to me that I had landed not at the penthouse in the afterlife but in the basement.
Yard work is the hubby’s responsibility, he was still in bed, but I couldn’t turn down an offer from T to help with housework.
T did a great job. He was focused for 15 minutes, helping make big piles. Then he decided to run around the backyard. He circled back in the last 15 minutes to help me scoop leaves into bags.
I was thankful for this hour spent together in the brisk autumn air and disconnected outdoors.
While we’re having some challenges with daycare in the afternoon and meltdowns in the evenings, he seems more consistently focused and regulated during the day.
I’ve written in the past how it’s important for me to help T build a work ethic; to cultivate a work hard and work first before play hard attitude.
T likes to feel useful. It’s a matter of helping channel his endless energy in purposeful activities that motivate him.
He is motivated when he knows there’s play after the learning and work.
To reward him for having a super weekend, T went on an afternoon movie date with the hubby to watch “Ghostbusters: Afterlife.”
My reward was three hours of child-free time and I met up with friends inside the same mall as the movie theatre.
It was my first time seeing this wonderful group of friends since the pandemic started.
Laughing, catching up and having grown up conversation with childhood friends. It felt like heaven.
An accidental discovery inspired a morning ritual to help send T off to his day on a positive note.
Recently, T was rummaging through office supplies in our cabinet and found post-it notes.
The hubby then drew a word art of T’s name on it. T loved it and carried it with him everywhere, including during the car ride to school and sticking it on his bedroom door.
We’ve had a few rough days the last two weeks: challenging behaviour at daycare and blood curling meltdowns at night.
Yes, we know by now these moments pass, but I am mindful of how responses from others to these moments – including ours – impact T.
Studies have shown that individuals with FASD often have lower self esteem.
T is not lacking in confidence and boldness. But I often think about how his self talk will develop in the long term when he is constantly being called out at school, daycare and home.
Earlier this week, as I was sitting at my desk getting ready for the day, I saw post-it notes.
So I took out markers and drew out the message, “You Are Super! Xoxo, Papa and Daddy” – pictured at the top of this post. I made the “S” in Super like the Superman S.
I gave it to T and asked him to read it – might as well sneak in reading practice. After he read it, I saw a huge smile on his face and he walked out of the room with the note.
I continued getting ready for the morning and as I walked down the hallway, I passed by his bedroom and saw him leaning on his bed looking longingly at the note – for quite a while that I was able to sneak this photo.
This melted my heart.
I love this kid so much – even during the moments when he is driving the hubby and I fucking batshit crazy.
And I want so much for the positive moments in his day to outweigh his challenging ones and for them to be amplified as his inner dialogue.
I added a few more messages over the week.
I want to keep it simple and from the heart.
T asked why I drew a tree on the note above.
I said that the tree was T, growing bigger and stronger each day.
I want to amass positive energy for our T to balance the challenging moments in his day.
Friday was a PA Day, so no school, and T came into my office in the morning as I was working and asked if he could write a note for his two cats.
They have a love hate relationship, so the fact T wanted to do this, instead of antagonizing them, was wonderful.
He came up with and wrote the message and I helped him spell it: “I love you. Xoxo, T, Daddy, Papa.”
I just realized I spelled out Daddy incorrectly.
The cats were hiding under the bed and when T put the note near them, our male cat, Kyrie, started to growl.
Told you, love-hate relationship.
“Did he like it?” T asked.
I paused and thought about how to keep the moment light and positive and I said, “I think he’s a little confused.”
This Monday, we celebrated an amazing human’s birthday: the hubby turned 41.
He took this week off work and I joined him for downtime on Monday. It was the first time we had to just the two of us in forever.
When we started the adoption journey, a former manager told me to avoid adopting a child with FASD, because she had friends who said it ruined their lives.
I’ve read heart wrenching posts on private forums from parents who’ve said raising an FASD child destroyed their marriage.
Now that the hubby and I have been in the thick of parenting a child with suspected FASD for 5.5 years, I can empathize with their perspective.
Most days with T have challenging, stressful and explosive moments.
Some days start with an outburst that sets a negative tone or a headache-inducing meltdown at night leaves me awake feeling guilty about not handling it better.
There is no respite. We’re on our own with little help because there are very few people that we trust to leave T with.
Despite best efforts, we argue more often than we should – often over petty things as a result of stress or being tired.
Special needs parenting makes emotional, mental and physical impacts on us as individuals and as a couple. The hubby and I both started to gray quickly during stressful virtual schooling, especially with unexpected stressors like my Ma’s stroke and recovery added on top.
On the very worst of days, I would think to myself this was not what I signed up for.
Now that I got that off my chest, I want to be very clear that it isn’t all bad. If anything, T has enriched our lives and he has made the hubby and I better and stronger as individuals and as a couple.
We are both unified in our love for T and our determination to do what’s best for him and to help him succeed.
We don’t always get it right – in fact, we mess up almost every day and we’re perpetually exhausted – but we give it our darned best and try to have fun along the way.
Here are a few ways thathas helped make it work for us.
We divide and conquer. I do the cooking, cleaning (except washrooms) and groceries; he does the yard work. He makes the lunches and bathes T, I do most of the school stuff.
We are lucky to have amazing family and friends as emotional support. We might not entrust them with T unsupervised, but they provide other ways of meaningful support. Most importantly, they may not fully understand FASD, but they accept T into their lives.
We make space for our interests and needs. It’s so easy, especially with a special needs child, to lose yourself in parenting, but we create time and space for our interests. Wherever possible, we introduce and include T in the enjoyment, such as exploring the outdoors.
We carve time for self care. This is more of a rarity than a norm, but it’s important to do so for our wellbeing as individuals and as a couple. We know when to seek help and to set personal boundaries. This blog is a part of my self care!
We focus on the big picture. It’s very easy to get lost in the challenges. But I always remind myself to look at the big picture, celebrate the many wins and ways that T is kicking butt. This often helps us re-centre our focus and gravity.
When we get the rare break, we take full advantage of it.
On the hubby’s birthday, I took him for lunch at one of his fave restaurants in our old neighbourhood. It was nice to be back in an area where we made many happy memories.
Lunch was delicious! I had my very first bowl of warm miso soup since the pandemic began.
The colorful ghosts of Christmas past emerged this weekend, sparking wishes for future memories.
After I did my Friday night groceries, I returned home to Christmas cheer thanks to T and the hubby.
It’s only mid November, but it’s family tradition to put up the tree, decorations and lights after Remembrance Day.
Christmas is without a doubt T’s favourite time of the year and he was counting down the days this past week till the tree went up.
T was reunited with giant inflatable Santa, which we quickly moved from the living room to outside because it was distracting T from his homework and well, everything else.
The hubby wrapped lights around the two trees in our yard. The bright white light – pictured below from last winter – feels so healing.
T did a great job helping the hubby decorate the tree. No ornaments were broken this year!
The tree reminds us of happy memories.
The ornaments document our family’s travels, including moments from the hubby and my 19 years together.
I’d like to share a few highlights:
This panda was from a street vendor when we visited Beijing, a few months after China hosted the Olympics in 2008.
This tiny Eiffel Tower keychain was from a street vendor in Paris. The hubby strung a ribbon through and turned it into an ornament.
This elephant was from our once-in-a-lifetime cross country trip to India nearly a decade ago.
The hubby is obsessed with the Royal Family and these ornaments are from The Stodgy… I mean, The Royal Collection store near Buckingham Palace.
This llama was from Peru, our last solo trip before T came into our lives unexpectedly a few months later.
And of course, we must represent Canada – and what better way to do so than a box of Tim Hortons timbit.
My favourite ornaments are the homemade ones that T’s teachers created with him over the years using supplies like a plastic cup, construction paper and a photo of T’s sweet face.
These are flimsy and amateur ornaments but they hold the warmest memories and most value. We pack them away into storage with great care.
It’s startling to me that it’s nearing Christmas. I genuinely feel like we just celebrated it.
Time flies and during these darker still-pandemic days, any way to light up the dark – literally and figuratively – is very welcomed.
Looking at our tree and the years of memories it represents, it makes me feel hopeful for new memories that lie ahead.
I look forward to discovering more of the world in the years ahead with T by our side.
The ghosts of Christmas past light the way for the future.
Our six-year-old picky eater has one fishy sense of humour.
This past weekend, we celebrated my second cousin’s 18th birthday.
My cousin and her husband treated the family to a sumptuous lunch at Congee Queen, one of my fave Chinese restaurants.
Anytime we eat at a restaurant, we pack food for picky eater T; this time, six meatballs, Goldfish crackers and chocolate milk.
Lunch was very delicious and included ginger fried lobster chow mein; Peking duck cabbage roll; roasted pork and jelly fish; BBQ eel fried rice.
It’s Chinese tradition to start a meal with soup. For special occasions, fish maw soup is a staple.
The main ingredient is dried fish bladder (i.e. fish maw). It sounds gross, but it is very tasty. It is rich in collagen and has a reputed benefit of giving a youthful complexion.
I looked at the bowl of soup and wondered if T would drink it.
And I sure as hell didn’t tell him what it was made out of!
This is a kid who has a tiny repertoire of food he’ll eat: plain pasta, buttered toast, chicken nuggets (McDonald’s only), Pizza Hut pizza with everything scraped off, pancakes (for dinner).
Credit for Photo at Top of this Post: Yelp.ca
But sure enough, T likes to subvert expectations. He inhaled not one, but two bowls.
I was utterly amused. This is a kid who dropped the F-bomb when we packed carrots for his school lunch. Yet he downed dried fish bladder soup like it was a vanilla milkshake.
Life is full of surprises, if you leave the door open to it, is what T teaches us every day.
The hubby laughed and said, “He better not expect us to be making this for him at home.”
It’ certainly not something we’d find at No Frill’s next to cans of Campbell’s soup.
I thought about other obscure Chinese food we could try with T. Wait till I tell T about the time I was his age and Ma tricked me into drinking snake soup!
Nature reminds us that magic exists before and right after the darkness.
Golden hour refers to the hour after sunrise and before sunset when the sun is softer and redder compared to when it’s higher in the sky.
Also called magic hour, it is a photographer and filmmaker’s dream.
I first noticed this in a visceral way during a walk with T in fall 2016.
He still sat in a stroller and we were in our old neighbourhood. The leaves had turned fiery yellow, red and orange. It was a sunny late afternoon and kids played loudly in the park.
The sun cast this magical light on the leaves – pictured at the top and below – and it had this incredibly soothing effect.
Phone pictures never do nature justice. But they provide an imprint in our memories that help evoke a specific moment and feeling in time.
On this day, I was lamenting that I was 3/4 into my parental leave. I reminded myself that there was still a lot of quality fun time left with T.
And indeed, there was. Our first Christmas together, our first family trip (a friend’s destination wedding) and celebrating T’s birthday together for the first time – two days before I returned to work.
Conceptually, golden hour exists all around us.
Autumn gifts us with one last display of magic before the dark days of winter. Daylight gets longer in the early days of Spring.
From T and my walk this Saturday.
Golden hour reminds me to not fear the darkness, in whatever forms it takes in our lives.
Because there is a golden light that precedes and immediately follows it.
It reminds me to let go of the dread of an end and to enjoy every last moment before the last grain of sand flows down through the hourglass.
This feels and looks like art to me.
The last two weeks, after I shut off my work laptop and came down from my upstairs office, I passed by our kitchen window, which overlooks our backyard.
On the sunny days, I noticed the golden hour light blanket the yellow leaves on our tall maple trees.
I stood and took in the fleeting moments before I went to pick T up from daycare.
The text from my pharmacy lets me know that my METH is ready for pick up.
It’s an auto-generated notification that includes the first four letters of the medication name in capital letters. I chuckle about this immaturely when the refill is made every few weeks.
In seriousness, I’m talking about methylphenidate – the generic drug more commonly known as Ritalin – which T started to take last July, shortly after receiving a diagnosis of ADHD.
I wrote at the time about feeling torn about the decision to start T on medication, including struggling over the potential stigma that may be attached with taking medication.
My apprehension grew during the initial weeks when we noticed T having rage moments and trouble with sleeping at night.
After consulting with his developmental pediatrician, we removed the third dose in the afternoon, which largely reduced the side effects.
Then it became routine for T and us – as well as his school and daycare, who administered the medication with our consent.
Over the last year, we adjusted the dosage, increasing the amount based on his weight and height.
To be honest, the hubby and I often discuss the efficacy of medication. On many days, T is still very hyperactive, impulsive and hard to focus.
We’ve inquired with his developmental pediatrician about doing a GeneSight test, because we’ve read on forums about parents who’ve done these tests which helps inform a medication plan best suited for the child.
We were advised this is likely not an effective route for kids with prenatal alcohol exposure.
I’m not an expert – and I encourage parents that read this post to consult with your pediatrician based on your child’s needs – but the hubby and I definitely notice when T is not on his medication; the rare time one of us forgets to give it to him.
A few weeks ago, T’s child and youth worker was not at school and T’s teacher sent an apologetic email saying she forgot to give the medication, a task the CYW looks after.
Let’s just say the teacher will never forget to do that again!
We are aware T’s response to medication will change over time as he gets bigger and that we’ll have to adjust and tweak along the way.
A methylphenidate pill (left) and a biphentin pill (right).
Last week, we consulted once again with his developmental pediatrician and explained the challenges T has been having around hyperactivity, focus and impulsivity.
So we decided to start T on a different medication: biphentin.
Our developmental pediatrician advised that it’s the same medication and dosage as methylphenidate. The difference is that T only needs to take it once a day and the medicine is time released over a 10-12 hour period.
So there won’t be the usual up and down in the middle of the day between his former two doses.
He suggested taking this earlier in the day to avoid potential sleep issues later in the day.
So another change is that we give the medicine at home in the morning and there is about an hour for it to kick in before T is in class; rather than giving it to him just before class starts.
We are just under one week into the new medication.
It’s way too early to tell its long term impact and I always remind myself that medication is not a one-stop magical fix. It is just one component of a larger toolkit to help T maximize his day.
But there are some early signs that make us feel hopeful.
This past Sunday, T decided he wanted to work on the “Everyone Is Awesome” Pride 2021 Lego set the hubby had purchased in the Spring.
We hadn’t opened the box, because the idea of T having access to 346 small Lego pieces made us nervous, as our living room often looks like a tornado had flown through it with debris of his toys scattered everywhere.
T is capable of functional play but he also enjoys just throwing his toys randomly everywhere! I suspect it’s related to his impulsivity and a self soothing mechanism.
But T sat down for over 30 minutes working on the Lego set, with guidance from the hubby.
And he finished putting it together! There were no rage moments or sleep issues throughout Sunday and the day before when we first switched medication.
The school week has been ok so far too.
His CYW and teacher noted on the first day that he was sitting better during circle time.
After school daycare staff reported he sat down at the table during “work play” for the first time.
We will continue to monitor, adjust, support and stay hopeful. We’re realistic that the challenges will continue but it’s about trying to maximize the good and minimize issues.
As T reminds us everyday, even during the very trying moments, everyone is awesome.
It’s also true that some individuals may need help with medication and, speaking as a parent with some lived experience, I think that’s ok too!
T’s work sits on my desk at home. I look at it throughout the work day and it makes me smile.
Watching people get stabbed to death is one way that I like to relax.
Before anyone freaks out, I’m talking about horror movies!
I was 15 when I became a lifelong horror fan after watching Scream at a friend’s house.
It’s somehow therapeutic sitting through horrifying, intense and sometimes hilarious situations and coming out of it unscathed.
I love them all: slashers like Halloween, zombies like 28 Days Later, found footage like Blair Witch, foreign horror like Train to Busan and my favourite genre, paranormal like The Exorcist.
The best horror are those that make a social statement. Romero rebuked consumerism in Dawn of the Dead and the Australian film Babadook was a reflection about grief.
Don’t fall into the witch’s brew, T!
Now 6, T is at a fun age when he enjoys spooky and scary things.
He gets freaked out by the dark, but he loves turning off all the lights and playing ghost.
He knows monsters aren’t real, yet he has nightmares about being chased by mummies.
He loves songs that sound spooky to him and asks me to put them on repeat.
And next to Christmas and birthdays, Halloween is his favourite season.
T is way too young to watch the horror films that the hubby and I watch, but I look very forward to the day when I can introduce them to him. What bloody fun we will have together!
As a busy working special needs parent, I’ve learned the importance of setting boundaries with family, friends and work.
My Online Therapy states that setting boundaries means creating limits with other people to help make your relationships healthier.
For me, setting boundaries is about valuing your wellbeing by not overextending the finite time and energy in your life.
A fairy tale-like entranceway at Guildwood Park, enjoyed on a recent family hike.
Viewing this as a parent, it is about maximizing what I have to give of myself to T by minimizing things that take away from my finite capacity.
I don’t say yes to everything asked by family, I avoid “toxic friendships” and I strive to maintain a work-life separation. These are some healthy boundaries I’ve set.
The aforementioned Facebook post also made me reflect about the boundaries I set with T.
I’ve written many times about how his behaviour can be challenging.
This post was a good reminder about the difference between boundaries and rules.
As stated on the above image, citing Dr Nicole Buerkens, boundaries are about what you will do, not what your child will do. A boundary is something that you have control over.
As noted on the image below, boundaries let kids know exactly what we will and won’t tolerate and how we will handle things.
This is solid advice that reinforces areas where we already do this and it reminds me of where the hubby and I can do better.
The hubby and I want to minimize our frustrating moments and maintain our capacity to do better for T. So it improves everyone’s wellbeing.
It’s easier in writing than in practice, of course, but it is important to keep trying!
A beautiful archway along a trail, and an entranceway in the distance, at Guildwood Park.
Sunday blessed us with a fun Papa and T date with animals and witches at a pumpkin farm.
On this beautiful autumn morning, T and I went on a morning drive, 45 minutes out of the city, to Knox Family Farm in Clarington.
Along with Christmas and birthdays, Halloween is one of T’s favourite times of the year.
We make an event out of pumpkin picking, costume selection and of course, the big day itself.
We kept it low profile last fall due to the pandemic. This year, as things open up, we ventured out for our family tradition.
We arrived at 11. The crowd was still bearable. Our first stop was to see the barn animals.
T spotted chickens and turkeys in the field, awed the pigs, goats and lambs, and was intimidated by the tall horses.
Going out with T requires lots of prep talks, transition warnings and proactive redirection.
I used the intrigue of visiting “Witches’ Lair” as an incentive for him to take a pee break.
T is at that fun age where he is into scary stuff. We’re still years away from watching slasher films together and I can’t wait for that age!
For now, a haunted house will do. Our T wasn’t scared but he enjoyed it!
We then walked around the farm grounds.
We were blessed with a beautiful day. Fall colours were near peak and it was soul-soothing to walk side by side with T in silence.
He found fake tombstones along the way. I tried to make a scary deal out of them but he said with bemusement, “They’re not real!”
Next stop: We checked out a corn maze. Naturally, T zipped ahead of me and I lost him for a few minutes – and boy, did I enjoy those few minutes of solitude!
The highlight of our visit was T going on his first pony ride.
At first, he was quite anxious and wavered between wanting to go and not. Eventually, I told him he could pick whichever one he wanted to ride: whether it’s a small pony or an adult horse.
He chose the tiniest pony in the bunch. And it was beyond adorable.
We ended our visit by picking the pumpkin.
I let T pick whichever two pumpkins he wanted and he did a great job.
For having a super morning of following instructions, I let T pick a snack of his choice from the snack tent. As expected, he chose a bag of kettled popcorn.
The hubby had stayed home – and got four hours free to himself (you’re welcome, dear!). T and I came home to a tidy house (thank you, dear!).
Stories like Kathryn and Seth’s made me feel part of a larger whole, less lonely and ever the more determined to succeed.
One part of her story stayed with me: “As a social worker, I believed nurture always won out over nature, and with love, a nurturing environment, and appropriate stimulation, he could overcome anything. Love is a wonderful healer, but it can not undo brain damage.”
After five years of parenting T, I can say that I agree with Kathryn.
Love will not cure the long-term effects that prenatal alcohol has done on his brain.
From time to time, when talking about T, family members would make comments like: Maybe one day, his brain will heal after being surrounded by love.
I find these well-intentioned comments frustratingly naive. It incites the same reaction in me as when politicians offer thoughts and prayers after a tragedy like a shooting.
Just like thoughts and prayers, while comforting and healing, won’t stop future shootings, love alone will not make T’s life easier.
Without educational supports, societal awareness about FASD, investments into social services, policy changes, and increased effort to reduce the harmful stigma surrounding FASD, T and others like him will continue to face challenges.
Recent fall family hike at Guildwood Park.
However and a big but… With that said, I strongly believe that love is half the battle.
Providing a child with a loving environment can help set a solid foundation to build their resiliency and to face the challenges.
When I attended an FASD seminar years ago, the speaker spoke about how trauma impacts the brain’s development and whereas the opposite can help influence the individual’s trajectory in a positive direction.
I’m a pragmatic optimist. I believe in the power of love to shape one’s destiny. I also just happen to believe that love alone is not enough.
To give kids like T a fighting chance, we have to invest in infrastructure, policies, resources, advocacy and education about FASD geared towards making their lives better and ditto the lives of their caregivers and key players, such as educators and employers.
It continues to dismay me how little is known about FASD by the general population, especially when it is more prevalent than one realizes.
This is why Kathryn Shea’s story inspires me. I have followed her family’s story over the years, checking in on her and her son Seth from time to time from a stranger’s distance.
Not only has she shown such compelling love for her son, but she’s dedicated her life’s work to making the world a better place for individuals with FASD.
Just last month, an FASD clinic, the first of its kind in Sarasota, was named in her honour.
As described in this article, Shea was instrumental in opening The Florida Center’s Fetal Alcohol Spectrum Disorders Clinic in 2005, the only clinic of its kind in Florida.
What touched me the most about reading this recent news story was seeing the now grown-up Seth in the photo, joining his parents in the ribbon cutting ceremony.
Watching salmon migrate upstream was unexpectedly calming and relatable.
The hubby, T and I spent this sunny but chilly Sunday exploring Port Hope, located an hour drive from home.
This scenic town served as the filming location for the recent two-movie adaptation of Stephen King’s novel It.
The town has a historic charm with its old but well-maintained and beautiful homes.
We walked around downtown, which I seem to feel was featured in the aforementioned movie.
The highlight of our visit was Ganaraska River Dam, where you can spot salmon and trout migrating upstream between August to early October.
We thought we had missed the annual migration but we were blessed with plenty of sightings.
T quickly claimed his own viewing spot.
It was not hard to imagine that T sees a kindred spirit in these determined energetic fish.
Salmon are said to live 3-5 years. Near the end of their lives, they migrate upstream back towards the river bed where they were born.
How they are able to remember and find their birthing spot is surely another sign of nature’s magic.
Once they spawn their eggs they die.
As I watched these fish make the tiring swim and jump upwards, I too found a kindred spirit.
I’m the fish and that unrelenting gushing water is our T.
As I was thinking about this, a salmon jumped out of the water, smacked onto a concrete wall and fell back where he had started from.
Yup, definitely a kindred spirit.
In case you were wondering, we did not encounter the demonic clown Pennywise from the movie It. I had a red balloon ready too in the hopes of getting a few hours off from parenting.
Looking for Pennywise the clown from It.
However, on the drive back home, we passed by this awesome house that was clearly ready for Halloween.
It brought a huge smile to T’s face and in turn, ours too.
My Life With T 