My Life With T

“Oh my God, is that a coconut?!”

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.

“Yup!” He replied back with a smile.

Afterlife

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.

It’s been three weeks since we’ve changed T’s medication.

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.

Post-It Affirmations

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.”

Making Marriage Work in Special Needs Parenting

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 that has 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.

We had gotten the birthday on earlier this past weekend, by setting up Christmas at home.

T helped me bake an apple pie for the hubby.

I also got the hubby his DQ ice cream pizza.

While waiting for our food at the sushi restaurant, the hubby asked me, “Are you 40 or turning 40?”

Yup, we’re definitely getting up there in age!

Light Up the Dark

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.

Fish Maw Soup

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!

Golden Hour

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.

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.

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.

Let’s Talk About Medication

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.

Introducing My Son to Horror

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.

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!

For now, PG-rated scavenger hunts will do!

This year’s pumpkins before they were butchered.

This year’s Halloween was subdued. T was home sick on Thursday and Friday with a bad cold and missed his school Halloween party.

We made it up to him by making an event out of pumpkin carving, with the two pumpkins we picked out last weekend.

As T helped the hubby carve them, he belted Britney Spears’ “Baby One More Time” from the top of his lungs.

All I will say is that pumpkins weren’t the only things being butchered that night.

Our family is home this Sunday with a cold and feeling generally blah. So we’re all taking it easy.

T and I watched the classic Home Alone. T may classify it as horror but I would file it under fantasy!

But we will still put candy out later for kids to help themselves to. And T will still put on his beekeeper costume and his daddy, the bee.

Me? I’m gonna be a jar of honey!

Happy Halloween, everyone!

Why I Set Personal Boundaries

As the gatekeeper to what enters your life, how do you set boundaries?

I reflected on this after I read this Facebook post about the difference between boundaries and rules on the fantastic FASD advocacy page Our Sacred Breath.

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.

Pumpkin Pickin

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!).

So it was a win-win Sunday for all of us!

Love Is Half the Battle

“Love is a wonderful healer but it cannot undo brain damage.”

When starting the FASD journey, I came across a parent’s testimonial that struck a deep chord.

Sarasota-based Kathryn Shea wrote a compelling story about raising her adopted son Seth.

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.

This story made me feel hopeful.

Hope, like love, is half the battle.

Swimming Upstream

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.

Great Expectations

As a special needs parent, I often struggle with the difference between adjusting and lowering my expectations.

This is forefront in my mind now that T, a kid with great potential and a prognosis of at-risk FASD, is in Grade 1.

School learning is now more formal and less play based. Expectations have gone up and with it, so have the daily struggles and stress.

Last week, we spoke with his teacher about developing his Individualized Education Plan (IEP) for this school year.

One thing she said struck me immediately: her goal is for T to complete 25% of the Grade 1 curriculum.

I’m an honest and heart-on-my-sleeve person so I immediately voiced my concern and asked if this would mean we start to widen the gaps between T and other kids. How would he ever catch up?

I explained that while the hubby and I recognize T’s prognosis, we hope that disclosing it would not mean teachers use it as a reason to dismiss T’s potential to learn and grow.

His teacher reassured us that she has worked with many children with special needs and explained the purpose of setting IEP goals is to ensure T can feasibly meet these goals and to scaffold his learning.

If T is able to meet these mutually-agreed upon goals, she will continually adjust and increase them throughout the year.

She reassured us that, if anything, she will try even harder with T.

I believed her, as I have a good feeling about his teacher this year.

“I must be taken as I have been made. The success is not mine, the failure is not mine, but the two together make me.”
– Charles Dickens, Great Expectations

But I did ruminate about this for a few days after and felt that familiar sense of grief: when the reality of your dreams for your child clashes against the challenging reality.

I’ve written many times that T is a bright, caring, funny, determined and strong-willed child. I still believe in this wholeheartedly.

But I can also see that his academic journey is going to be challenging. There is no doubt the next few years will be very trying.

I have a love-hate relationship with the term “special needs.” I hate the stigma that is attached with this label and find that it can be damaging when it is applied by people who don’t have a full understanding nor are equipped with the tools to support an individual with additional needs.

My biggest worry is that people will limit, dismiss and not try as hard with T, because they will think about why they should even bother or they lose their patience with his exhibited behaviour.

But I also recognize that in order to build empathy and understanding – and to also advocate for and to receive the resource supports for T, we need to engage in open and respectful dialogue about his needs.

“I have been bent and broken, but – I hope – into a better shape.”
– Charles Dickens, Great Expectations

We have been very fortunate so far to have met understanding and empathetic professionals in the school and daycare system. We know it won’t always be like this.

For myself, the mental hurdle I always have to leap over is recognizing that adjusting my expectations – such as breaking down T’s learning goals into bite-size feasible pieces in order to build his long-term confidence and success – is not the same as lowering my expectations for him.

If anything, the hubby and I have higher expectations for T, because of the additional effort he requires from us on a daily basis.

I have to remind myself that T is on his own journey and the yardstick we measure him up against is himself and not other kids.

Most days, this is an easy mental model to follow. On some days, especially the frustrating ones, it is tempting to lose sight of the target and to start drawing comparisons with other kids.

It’s a good thing T is an easy kid to love and reminds us through his magical moments of pure endearment to always keep our eyes on the prize.

The Promise of a New Day

This Thanksgiving, I am grateful for the fresh start that each new day brings.

The last two weeks have been rough with T.

I don’t know if it’s because the honeymoon phase at school has passed or if he’s finding the transition period challenging but we’ve had rough patches on an almost daily basis.

During daycare pickup last week, his teacher quickly walked towards me when I arrived to let me know there was an incident.

T had punched one of the kids in the arm giving them a bumpy bruise after the kid took the toy away from T.

I was upset with T the car ride home and all evening at home, reminding him that while the kid taking the toy was unacceptable, punching someone was not right.

Last Friday was a challenging day for T at school, with incidents in the playground during all three recesses, including him hitting a kid with a stick.

It was very hard to not get upset at these incidents and it felt like every morning and evening were filled with tension and tears.

On Friday night, as we looked forward to a long weekend, I told T at bedtime, “I know there were a lot of tears, screaming and hard moments this week, but we will turn it around this weekend.”

That’s the great thing about kids with FASD, of which T has an at-risk prognosis for: every day is a blank slate and a new start.

Our Thanksgiving family tradition is to do a short weekend getaway to enjoy the fall colours.

We visited Quebec the first year T came into our lives and before the pandemic we did a chowder-inspired trek to Vermont.

This year, we kept it local: an overnight visit to scenic Blue Mountain in Collingwood, just under two hours drive from home.

It’s been nearly 15 years since I last visited with friends for a day-long ski trip.

During the fall, it was so beautiful with changing colours; vibrant yellows, oranges and reds.

We boarded a gondola, a new feature since our last visit, that took us to the top of the mountain, where we enjoyed a nice long hike through trails and beautiful views of Collingwood below.

T really enjoyed the ride, telling us proudly that he was not scared of the heights.

As I watched T in the gondola, looking out into the world below, I said a silent prayer to give thanks for this moment of reset and renewal.

Every day is a clean slate. That is what I’m most thankful for this Thanksgiving. The opportunity and the ability to keep looking and moving forward to the better views that inevitably lie ahead.

Honey Harbour

If it’s bitter at the start, it’s sweeter in the end.

I reflected on this during a two hour drive home from Honey Harbour, a scenic set of islands along Georgian Bay, where the hubby, T and I spent Saturday with my aunt and two cousins.

We woke up early to ensure we arrived at 9:30 for the boat taxi to take us to the island.

The 10-minute boat ride over was beautiful, as we daydreamed about owning one of those cottages by the water and tiny islands.

T sat the back of the fast-moving boat, enjoying the foamy waves, feeling the wind on his face.

Thankful for a day to enjoy the beauty of nature.

This weekend marked the end of the first month of school.

As a whole, things are going ok at class and daycare. But we are also dealing with daily frustrating challenges.

Simple tasks such as getting ready are battles, often resulting in tantrums, with toys thrown at us, angry words exploding out of T’s mouth.

T has had a few rough moments with peer interactions – but we are thankful for the support of a temporary Child and Youth Worker and wonderful staff at school and daycare.

Evenings are often tough around bedtime. His teacher has started assigning daily reading homework. You’d think this would be easy, but just getting him to focus is tiring as there is always an excuse to not do the task.

It may not feel like it on some days, but we are always taking steps towards the next milestone.

So it was with his mindset and deficit of energy that we entered this weekend.

Our day at Honey Harbour was great in the grand scheme. T was in his element, charging up and down the beautiful granite hilly trail. He can be a parkour artist one day!

The kid with no fear. A good reminder to focus on the bright spots while working through the patchy ones.

The challenges came with his impulsive hyperactivity. We repeatedly told him not to dig up the moss or wild mushrooms, which could be poisonous, or to step on the muddy puddles.

So he dug up the moss every few steps and threw them at the hubby and I. Picked up wild mushrooms and pulverized them in his hands. Stomped on muddy puddles and ruined his brand new shoes. The whole time laughing and thinking the hubby and I were amused.

The beauty of fall provides a wonderful moment to take a deep calm breath.

It was good for my family to see this behaviour. I sometimes feel like people don’t quite understand when I explain T’s challenges.

But as always, I framed it as challenges related to his neurological condition: hyperactivity, lack of impulse control and difficulty with learning from consequences. Reiterating that T is not a bad kid, he just has challenges many kids don’t as a result of prenatal alcohol exposure.

Other than his frustrating moments, T was at his charming best.

He was very playful with his Uncle J, whom he really likes. He helped my aunt and my cousi walk down the slippery downhill spots. He gave them big hugs.

During a picnic lunch stop, my aunt noted that she noticed he is a lot calmer than before. I thought that was very kind of her to say.

Sometimes, the hubby and I are so mired in the weeds that we forget to take a step back to see all the gains T has made.

He can be so frustrating and irritating, but he has also made tremendous progress.

I need to remind myself, especially during the hardest moments, to celebrate and focus on that.

According to experts, a hive of bees must travel up to 55,000 miles to produce a single pound of honey.

As I stood at the scenic lookout points at Honey Harbour, while our T, coincidentally wearing a bright yellow hoodie, flitting about like a busy bumblebee that’s ingested a pound of speed, this is what it means to be his parent.

It is a shit load of work, probably requiring more effort than an average parent would exert in their day, but there is sweetness that comes through this laborious process.

T was having a blast in nature, running about and exploring with abandon and enjoyment.

If it’s bitter at the start, it’s sweeter in the end.

On the boat ride back, the exhausted hubby held onto T’s leg while he peered over the boat. I silently motioned to toss T over. He said, “Oh, I’ve thought about it,” and we both laughed knowingly.

The Nights That Never Die

I often think about the important life advice I want to share with T as he gets older.

This past Saturday, I came across a song by the late Swedish DJ Avicii, whose soulful work I’ve long admired, called “The Nights.”

Its simplistic lyrics, told through the perspective of a young man recounting his father’s advice, deeply resonated with me.

He said: ‘One day you’ll leave this world behind.
So live a life you will remember.’
My father told me when I was just a child
‘These are the nights that never die.’
– The Nights

Every parent has their own perceptions of the important things to impart to their child.

One of my dearest friends gifts T with a book for every birthday. Her latest gift is Oliver Jeffers’ “Here We Are: Notes for Living On Planet Earth,” a book the Irish artist wrote detailing what he felt his newborn child needed to know.

Growing up, I always got the impression from my parents that I needed a good education and a well-paying job to be successful.

My mom always hoped one of her kids would become a doctor and has transferred that hope to T, even after I’ve reminded her that while we won’t limit him, his prognosis will make school-based learning challenging.

My parents weren’t wrong that working hard in school and life is important, but I’ve learned to use other metrics of success.

First and foremost, happiness = true success.

From that flows the values and hope that I would like to impart to T:

Work ethic and enjoyment over status
Life experiences over material things
Comfort, health and kindness over wealth
Quality over quantity of relationships
Journey and process over destination
You are never alone in this world
Daddy and Papa are always here for you
Define for yourself what happiness means to you – then work and fight for it

In my prayers, I often ask for T to live a life with happiness, good health, self sufficiency, rewarding lasting relationships, and the ability to contribute positively to the world and to himself.

Whatever that looks like for him, I’m open to all possibilities.

One day my father, he told me
‘Son, don’t let it slip away.’
He took me in his arms, I heard him say
‘When you get older
Your wild heart will live for younger days
Think of me if ever you’re afraid.’
– The Nights

On Saturday, we had a rough start to the day. The smallest things – getting ready to go for a walk, practicing reading – felt like a battle.

Feeling frustrated, I left him in the hubby’s care and went to the gym to let off steam.

Later at night, I was lying in bed reading the news, when T came in to snuggle and asked if we could look at photos on my phone.

We journeyed back to our first camping trip, a video of him going down a set of stairs for the first time, to a video of him cliff jumping for the first time at Killbear last summer.

After T went to bed, I scrolled through Instagram and came across a travel video that was scored with Avicii’s song.

The song struck such a chord, after T and my walk down memory lane moments earlier.

I imagined that it was T singing those words – and living his best life – and felt a tear or two fall down my face.

When thunder clouds start pouring down
Light a fire they can’t put out
Carve your name into those shining stars
He said: ‘Go venture far beyond the shores
Don’t forsake this life of yours
I’ll guide you home, no matter where you are.’
– The Nights

Bringing An Animated Italian Dish to Life

Thanks to Disney, I’m discovering the joys of Italian cooking with my family.

I recently wrote that T loves the movie Luca, a wonderful animated coming of age story about accepting what makes you unique.

The film is also a love story to Italian culture, from its beautiful seaside town setting to the delicious cuisine enjoyed by the characters.

One memorable scene is when the characters enjoy a traditional Northern Italy dish called trenette el pesto (pictured at top).

I enjoy Italian food but it’s not something I often make. Carbs are also counter productive towards my current “I want abs, dammit!” mission.

I recently discovered Instagram videos by The Pasta Queen. She is over the top but in a tongue-in-cheek way and her recipes are amazingly beginner friendly.

I came across her pesto pasta recipe and noted that it looks like the dish from Luca.

I thought about how much T loves Luca and what a picky eater he is. So I had to try making this, in the hopes of adding a new dish to his limited rotation.

BuzzFeed recently made the Luca recipe as provided by Disney’s marketing team.

I stuck with the Pasta Queen recipe, which has almost all of the ingredients for trenette el pesto: fresh basil leaves, garlic cloves, pine nuts, pecorino Romano, parmegano reggiano and extra virgin olive oil.

The Disney recipe also includes green beans and potato. But whatever.

Just seeing the lovely ingredients together was so soothing to my soul. Cooking truly brings me comfort these days.

What was great about this dish is how easy it was to make. I guesstimated portions for each ingredient and tossed them in the food processor.

And voila! I made pesto. I never realized how easy it was!

The hubby teased me, as he always does, after I threw around, with extra enunciation, the fancy-sounding names of the ingredients.

“You know parmegano reggiano is just Parmesan cheese, right,” he said.

I gave him a silent glaring look that said, “Get out of my kitchen.”

I then placed the pesto atop freshly-boiled linguini. Then I applied an Italian cooking technique I recently learned.

Instead of throwing out the pasta water – from the pot the linguini cooked in – I kept a cup and poured it over the pesto and linguini.

The pasta water, pictured below, helped bind the pesto to the linguini. Who knew!?

And voila, here is the pretentiously-plated pesto pasta!

T was excited as I was making it, popping by every now and then to check on my progress.

When I presented him the final plate, he looked at it, smelled it and promptly said, “Yuck!”

Oh well, we tried! In all honesty, I was glad there was more for the hubby and I to enjoy!

This experience has unlocked a new interest in exploring traditional Italian cooking.

Like I do with everything else, I had used triple the amount of garlic required. And boy, did we feel it after!

As I was lying with T at bedtime, we snuggled closely as always. After I spoke, T told me in his usual frank way, “You need to brush your teeth, Papa. Your breath stinks!”

As they would say in Italy: That’s Amore!

Low Tide

One great advice I’ve received about finding balance in life is a metaphor about tides.

Tides are described as “the rise and fall of sea levels caused by the combined effects of the gravitational forces exerted by the Moon and the Sun, and the rotation of the Earth.”

My colleague’s advice is deceptively simple but wise: when tide waters come in, swim. If treading water is all you’re able to do, you’re doing great!

When tide waters recede, take time to catch up on things you never get to do during turbulent times.

It’s a great metaphor that applies to anyone. When viewed as a busy working special needs parent, the advice boils down to: take advantage of the bits of downtime that life blesses you with.

This summer, we were blessed with nearly two weeks of relaxation in August to visit T’s Grammy and Grandad in the East Coast.

After a challenging Spring of simultaneous virtual schooling and work, I took full advantage of this gift of time: I did not log into work once, I went to the gym and I inhaled the salt water air.

On our last day at my in-laws’ cottage, we were blessed with a beautiful low tide morning. The waters receded and exposed sandbars.

T, his cousin, Aunt, grandparents, the hubby and I joined other locals to walk leisurely bare feet on the shallow water and sandbars.

T busied himself by helping dig up quahogs and crabs. The hubby was especially great at knowing where to dig up quahogs.

Together, we collected quite the stash (see photo at the top) and even found a large one!

In the past, the hubby would cook the quahogs into a yummy chowder. But there’s been reports of a mysterious neurological condition affecting locals that’s been linked to eating wild quahogs.

So no thanks! We have enough neurological-based challenges that’s keeping us very busy!

So we left the quahogs alone and they all eventually buried themselves back in the sand. It’s quite marvelous how they do this!

T also found small crabs and even larger ones (above) and also jellyfish (below).

Myself? I zoned out. My mind drifted off into my quiet, calm and happy place – that the hubby jokingly refers to as “La Isla Bonita.”

I watched T and his cousin enjoy themselves. I let the shallow refreshing water sway back and forth above my ankles. I silently prayed to give thanks for the two weeks of restful bliss.

We then went back inside to have lunch and to enjoy the final hours of our vacation before we had to head back home early next morning.

Outside, tide waters started to come into the bay.

Bugs and Helping Kids Overcome Fears

Our 6 year old was bugging out and we tried to help him find a new way to look at his fears.

We first noticed this behaviour in July, when he’d hyper-focus on flying insects: everything was a “bumblebee”, including flies, dragonflies, mosquitoes and yes, bees, wasps, hornets.

He’d become frozen in fear, asking for our help to walk down our front steps because he was afraid he’d get stung.

The hubby and I were not sure how it all started and we also knew fear of insects is normal.

But we also just began summer and we didn’t want it to affect plans we had to explore the outdoors, where there were bugs everywhere!

Thankfully, T was still game to do our outdoor activities – hikes, roadtrip, swimming in the wild. But unlike previous years, a lot of his attention was on the bugs, either not wanting to be stung or wanting to swat them.

And the kid wonders why they could ever want to sting him!

I did have a lot of empathy for T.

When I was 7 in the Philippines, I was watching TV on my parent’s bed when I felt something crawl on my leg. It was a big cockroach!

I screamed and swatted it off my leg and then its wings spread open. I jumped off the bed screaming as the roach flew after me out of the room and into the living room. I jumped on the couch and turned around and saw this roach flying towards me.

I felt so creeped out about insects for many years after.

So it was with this mind that I knew we had to try a different approach other than, “Relax, they’re not going to hurt you.”

It was important to validate T’s feelings, while trying to find a productive healthy way to help him face his fears.

As someone who works in information services, I thought the best way was to share factual and fun information about insects – and to show T that insects are nothing to be afraid of and in fact, are very cool.

So I first found a few age appropriate videos about bees and we watched them.

We learned about why the bumblebees buzzed about busily in our garden next to our front steps. What a surprise: they were collecting nectar and not waiting to attack T!

We learned that bees do sting people, but they only do so when they are afraid or angry. We learned that when bees sting, they die. So they have to be really scared or angry to sting someone!

So every time we were outside and T got into one of his perseverating moods about “bumblebees,” I reinforced the same message, “Bees only sting you when they are angry or scared, so just leave them alone and you’ll be fine!”

In addition to watching videos, we tried to read books about insects.

Books are a great way to convey a message in non preachy ways. Astronaut Chris Hadfield’s The Darkest Dark is one of my favourite books that we’ve read to T as it conveyed the message out the dark in T’s room at night is nothing to be afraid of.

To be clear, T still gets creeped out by bugs… and the dark at night. We never expected nor received an overnight cure.

But over the summer, we slowly saw a calmer T around bugs. By learning more about them, he even started to find them interesting.

He became curious and less fearful and approached them to observe them… and yes, to squish them. He is a six year old after all!

Daycare staff report that he enjoys looking at ant hills when they play outside.

At home, he likes to look at the spiders and cobwebs outside our disgusting old living room windows.

Most recently this week, he became very fascinated with walking sticks, insects that look like, well, walking sticks – after they were very briefly mentioned in a bedtime story we read called, “Goodbye Summer, Hello Autumn.”

It was all he could talk about this week.

So I found a short video about walking sticks that we enjoyed together before bedtime. It was a nice way to show him just how amazing insects are, in this case, camouflaging themselves to increase their odds of surviving predators.

When I think about what is going on in the world, with spineless politicians and groups waging a disinformation campaign against COVID safety protocols and vaccines, using fear as a weapon, I can’t help but think about what our T has taught the hubby and I about facing one’s fears.