My Life With T

The Skin We’re In

Being thick skinned takes work, whether it comes to parenting or Air Frying pork belly.

When I cook, one of my self care routines, I find parallels with parenting a child with FASD.

My cousin gifted us an Air Fryer for Christmas and it’s been amazing to make recipes on my bucket list, most recently roasted pork belly.

I got a 1.5 pound cut of pork belly, with good distribution of skin, fat and meat.

I boiled the meat for 15 minutes to remove the impurities then rinsed it under cold water.

I then poked holes on the skin using a fork – you can use a toothpick or skewer – which allows for bubbly crispy skin.

Don’t poke into the meat or the meat juice will spoil the skin crisping.

For the skin to crisp up, it’s important to dry up the skin.

I brushed it with vinegar then salted generously to draw out the moisture.

I put it in the fridge uncovered for 48 hours, taking it out after a day to pat the skin dry and to score the meat in one inch squares; then seasoned the meat with five spice powder.

When I was ready to air fry, I wrapped the sides of the meat in foil then sprinkled more salt on top.

I roasted it for 40 minutes in 390 degrees Celsius.

And voila! It exceeded my expectations – the skin was so crispy and the meat was juicy.

Being a parent of a child with FASD can feel like a pig being slaughtered and roasted.

Many parents of kids with FASD often share challenges with verbal aggression – and the hubby and I are certainly not immune to it.

“Shut up” is T’s go-to phrase when he doesn’t get his way or when he’s refusing to comply. When he’s very disregulated, he will hurl threats or hurtful comments, such as “I hate you” or “you’re the worst.”

I’ve learned to be better at not taking it personally – and to reframe his behaviour as symptoms of his disability: impulsivity (says the first thing on his mind) combined with difficulty regulating his emotions (says the thing to inflict the most hurt).

I came across the very useful QTIP acronym on Jeff Noble’s FASD Caregivers Success Group.

But I’m only human. No matter how thick skinned I am, things get to me if I am consistently poked at – like pork belly – and it gets to me, because I parent with my heart wide open to T.

I feel horrible when I don’t react with calm and grace in moments I feel like I’m submerged in boiling water.

I’ve learned to be less bothered when the comments are directed at me. Because I know that in one moment, T could be screaming I’m the worst parent because I’m ending his bath then moments later, we’re snuggling with a book in bed and he tells me he loves me.

What bothers me are the reaction – said out loud and unsaid through body language – by people who see T at his worst.

I remember one family member remarking on T after he was so awesome throughout my sister’s funeral service. Instead of attributing it to maybe, just maybe, he’s a good kid, the comment was, “Did he take his medication?”

People are quick to judge and to label kids into black and white buckets based on disregulated moments and these overshadow the moments when T is good, kind, caring, funny, regulated, compliant and empathetic.

But unlike roasted pork belly, our skin and spirit do toughen up – and I choose to focus on the positive and the things I can control: advocating for T, raising awareness about FASD and increasing understanding, one heart and mind at a time.

Unlike roasted pork, I don’t want life as a special needs parent to make my exterior hard, coarse, crisped – and jaded and cynical.

So it means to not dwell on the small stuff and to brush myself not with vinegar and salt but with the good stuff that fill up my heart and spirit.

And that includes indulging in my cooking adventures.

Chosen Family

Holidays provide time for rest and reflection.

Family Day is a special holiday, because it comes after Valentines and the anniversary of finalizing T’s adoption in court.

When T was a toddler, we loved reading Todd Parr’s Family Book, which spoke about families in all forms – nuclear, single parent or multi-generational households, same sex parents, adoption, bereaved families.

One thing that’s clearer as I get older is the importance of chosen family.

Family is not just defined by blood. It’s about bonds formed by choice over time, respect and love.

Last night, we enjoyed hotpot at a friend’s home – and the shared cooking and conversation felt wonderful and soothing.

T enjoyed playing with our friends’ teenaged kids, who were once much younger than T was.

As a parent of a child with FASD, quiet free time is a luxury and my circle – my chosen family – has tightened the last few years.

In many cases, the pandemic has created distance and in some cases, I decided to not spend my energy on fairweather relationships.

I am very thankful for the relationships that have endured through my parenting journey.

And I wish for T to be blessed, as I am, with his own chosen family as he moves through life – relationships that are respectful, soul-filling, lasting and that help keep him on the right path.

Stand Under My Umbrella

Six years ago today, also a Wednesday, T, the hubby and I became a forever family.

In many ways, it feels like a lifetime ago when our adoption was finalized in court – and in other ways, I think with awe, “Has it been only six years?!”

So many moments have happened since – joyous highs and crushing lows. But yet, like T, every day is a new day and we keep chugging along.

I love that this anniversary always falls after Valentines Day and before Family Day, because it is symbolic of what love and family mean to me.

Shining Together

This Sunday was Super Bowl Day and I was excited about Rihanna’s halftime show.

The hubby and I loved her music, as it played in the clubs when we started dating in our 20s.

I went on a binge of rediscovering her music last week – hits after hits – and it was fun introducing them to T during our drive to swim class.

After his lessons, we went to a birthday party for the daughter of the hubby’s friend and colleague.

It was the first party T got invited to in the last three years – and it reminded me of the guilt I mildly feel for not having yet done a birthday party for T, with the pandemic partly to blame.

T made a wonderful card for the birthday girl.

The party was hosted at a small art studio for kids, as you can see by the awesome creations below.

We regrettably arrived late and the kids had already started a group painting activity.

We encouraged T to participate, but the combination of arriving mid activity and him not knowing anyone other than the birthday girl made him feel reluctant and shy.

So he stayed outside the room and looked around the Studio. I wasn’t fussed but the hubby felt embarrassed and flustered.

The Studio staff were empathetic and offered to do an activity with T to pour small plastic balls into a deflated balloon to create a hand fidget toy.

Afterwards, the kids gathered to eat pizza. He was still reluctant to join, so we sat and ate outside.

Eventually, T warmed up and went inside – just in time for ice cream cake!

“When the sun shines, we shine together
Told you I’ll be here forever
Said I’ll always be your friend
Took an oath, I’ma stick it out ’til the end
Now that it’s raining more than ever
Know that we’ll still have each other
You can stand under my umbrella.”
– Rihanna, “Umbrella”

As an adult, I can find social events hard, so I can relate with a kid, FASD or not, navigating a party where he did not know anyone and he arrived late.

So you know what, T did awesome.

I loved when the host asked who wanted more cake and T said out loud, “(Birthday girl) should get a big piece because it’s her birthday.”

T brought Moo Moo with him and Moo Moo got to meet a fellow farm animal at the party! 😊

After the cake, it was piñata time. The kids lined up to each take a turn swinging at Olaf the snowman.

T didn’t want to line up and we could tell he felt anxious.

When the piñata broke and the kids grabbed the candy, T started tearing up. Thankfully, the host parent bundled up a bag and gave it to him.

We stood with T and stayed calm to help him calm down – and eventually he did.

And just like that, the party was over. As we exited the Studio, T pointed out his gift and card to the birthday girl.

The party experience, its ups and downs, sums up how I feel about parenting on this forever family day.

When the sun shines, we shine together. Told T we’ll be here forever. Said we’ll always be his friend. Took an oath, we’re gonna stick it out ’til the end. When it’s raining more than ever. Know that we’ll still have each other. He can stand under our umbrella.

Sweet Dreams

Time flies. It’s hard to believe but our little guy turned lucky number 8 last weekend.

T had been counting down excitedly for weeks. But his birthday week got off to a rough start.

Last Monday, T woke up around midnight and threw up. A lot. Then woke up every hour after to throw up even more.

We kept him home for two days. It turned out a stomach bug went around his class, as his teacher and classmates also caught it.

Thankfully, he was fine by the weekend.

We did a Sonic the Hedgehog theme birthday, with matching balloon colours.

Blue for Sonic, orange for Tails, Red for Knuckles.

The hubby baked a homemade Sonic cake with cake toppers purchased online.

And the cake was yum!

T really wanted a party, but with my sister’s funeral taking all our energy, we didn’t have time to plan one. We made a pledge to do one, his first-ever party, for his 9th birthday next year.

But it was wonderful that his CYW gave him a gift and two classmates each made him a card.

My good friend dropped off a book for T, another Oliver Jeffers book, which has become an annual tradition. Our family loves his books.

Instead of a party, we took T to Niagara for fun at the Fallsview waterpark.

The last time we were there was to celebrate T’s 5th birthday, with his foster parents and brother. Little did we know that a few weeks later, the world would forever change with the pandemic.

It was nice watching T have fun at the waterpark. What a difference three years makes. We didn’t need to supervise him closely this time.

We really needed this weekend as much as T did and it was a welcomed change from the challenging last while.

You know you’re exhausted when you sign a birthday card for your son using your first name instead of “Papa.” 😆

In Chinese culture, 8 is considered a lucky number, because it is often associated with wealth.

During the drive to and from Niagara, we played “Sweet Dreams (Are Made of This)” by Eurythmics.

I’m not sure where T first heard this song but it’s his current favorite and on repeat in the car. He calls it the “seven seas song.”

Growing up, we often heard our parents share their dreams. It often had to do with us being a doctor or having a well-paying job – because wealth was often associated with success and a good life.

As a grown up and a parent – and I’m not just viewing this through the lens of special needs – my dream for T is more simple and open ended.

In my prayers, I pray for T to grow up happy, healthy, self sufficient, to do something he loves, to have lasting friendships and relationships, to stay out of trouble, and to contribute light to this world.

How he does that – we’re open to all possibilities.

As life with T teaches us, there is no linear nor singular path to success.

Sweet dreams are not made of just this one thing.

As T noted while he was playing with his golden 8 balloon, 8 turned sideways is infinity.

And who am I to disagree?

Family Traditions

Time spent and memories made with our loved ones are what really count in the end.

When my sister learned her chemotherapy was not working, it was sad watching her come to terms with her time left.

She said the saddest thing was not getting to spend more time with family and friends.

Shortly after her funeral, COVID hit our family – the hubby got the brunt of it – and I felt a tad stressed.

T’s teacher sent an assignment home on the weekend – asking us to work with him to complete a worksheet about family traditions ahead of the class talking about them the coming week.

While I didn’t need one more thing to do, I loved her accommodating approach for T.

I first explained what family traditions are then asked T to write one word and draw one photo to represent one of our traditions in each of the six boxes on the worksheet.

I let T take the lead and it was touching to see the six traditions he chose: Christmas, Easter, pizza, camping, beach and “happy birthday.”

Family traditions are important to me, because these moments create lasting bonds and memories.

They could be big events like a family vacation and more often than not, they are the simpler pleasures – like a walk or hike together, summer swimming or Friday night takeout.

Traditions represent routines and structure and predictability are so important for kids with FASD.

Traditions give us something to look forward to. Knowing milestones that lie ahead in 2023 is helping me get through the challenging past while.

Working on the traditions assignment with T helped me get through hard days in January. I enjoyed the trip down memory lane and it was touching these traditions mean something to him.

Christmas

T’s favourite holiday and the one he looks most forward to is Christmas. He can roleplay Christmas and Santa any month of the year!

Pizza

T is a very picky eater so when he finds something with protein (meat) on it, we celebrate. We have at least one pizza night a week.

Beach

We are fortunate to be able to go on family vacations and we try to do something, nearby or further, once a year. As T is younger, we do family friendly beach vacations. As he gets older, we hope to explore other parts of the world together.

Camping

Walking through the campsite at Algonquin at age 2.

One of the best things about parenting is introducing your traditions to your children so it becomes their tradition – like camping. T went on his first camping trip at 18 months with us and it’s now a summer tradition.

Easter

Dyeing eggs during the first pandemic Spring in 2020.

I was shocked that Halloween didn’t end up on T’s traditions worksheet, but I was amused he chose Easter. Come to think of it, he always enjoys the egg hunts each year.

Happy Birthday

Celebrating T’s second birthday, our first birthday with him, at Ma’s.

Birthdays are up there with Christmas as something T looks forward to every year. This year, T wanted to invite classmates to our house and we’re not comfortable yet to do a party. But we told him we will try for his 9th birthday next year – as a new tradition to look forward to!

A few days into the following school week, we got a lovely text from his CYW.

She told us that T did a great job presenting his worksheet to the class – and that he spoke clearly and confidently.

We know public speaking is something T doesn’t normally enjoy, so we took this as a win and were so proud of him.

To celebrate, we ordered pizza for dinner.

All That Matters

Our family’s recent and first experience with COVID reminded me what’s truly important in life.

Yes, the dreaded COVID finally hit our family and I was a single parent for nearly two weeks.

Shortly after my sister’s funeral during the holidays, our family was longing for respite. No more bad news, please.

A few days later, the hubby came down with cold and flu symptoms and a fever – and a test confirmed he had COVID.

While I had no symptoms, I tested the next day to be safe. It showed a faint second line, meaning I had it too.

We kept T home until we were sure he had no symptoms and we tested him before we sent him back to school.

A lifetime of watching zombie apocalypse movies prepped me for this moment.

We immediately isolated the hubby in our bedroom and I slept in our guest room. We all masked indoors and I kept my interaction with T to a minimum until I tested negative two days after my positive test.

Still exhausted and processing from my sister’s funeral, I was extra sensitive of death and a part of me worried about the worst case scenario for the hubby.

I went into caregiver mode – sending reminders to the hubby to drink water and medicine, waking up at night to remind him to drink water, to take his temperature and to make sure he didn’t have breathing issues.

The hardest part for me was for 13 straight days, I did all of the hubby’s tasks, like dropping T off at school, doing T’s bath, and getting no breaks on the weekends.

It was exhausting! But you know what, I enjoyed the extra bonding time with T. Getting to play with him, see his morning routine and friends at school, meeting his CYW.

It reinforced to me about all that matters in life – our loved ones.

It reminded me about the things we often take for granted – second nature routines – like all the tasks my hubby does that I never worry about.

T was so good and empathetic. He was and still is a needy child, but I also saw his appreciation and care for his Daddy and I.

And to the single parents – some of whom are bloggers I follow and admire – kudos to you for doing this every single day!

Last Friday, I took a solo lunch break at our local mall’s food court. The hubby finally tested negative and I treated myself to this hearty bowl of ramen with chicken karage on the side.

Later that afternoon, as I drove T home from daycare, I shared the happy news that daddy was finally free of COVID.

T let out the loudest cheer and scream and almost bounced out of his seat.

When we drove up the driveway, he could not have ran out of the car fast enough.

His daddy was waiting at the door and after not hugging or much interaction for 13 days, they gave each other a long tight hug that seemed to last for a lifetime.

The Wedding

We took our 7-year-old to his first wedding this past weekend.

Well, at least the first wedding he’ll remember. He attended his first and only wedding in 2016, a friend’s destination wedding, when he was 1.

As with all social events, we had some initial apprehension of how T will be.

But we believe it’s good to let T experience these life moments as they help him build his social skills and broaden his awareness of the world.

We briefed him about what to expect and we’ve also read books in the past about weddings, such as the fabulous Worm Loves Worm, a book that spoke about marriage of all forms.

It was a beautiful wedding held at the charming Old Mill Inn and it brought back fun memories.

The hubby and I attended our first wedding as a couple there back in 2004 and we’ve attended two other weddings there since.

We had planned to sit at the back, in case we needed to duck out to give T a break, but we spotted friends in the third row, so T got a great view of the ceremony.

He sat so well through the sweet ceremony. But T being T, muttered out loud when a baby started crying, “Oh my God, that baby is so annoying.”

I had to bite my tongue from laughing.

A lunch reception followed and we sat with our friends and their two daughters.

I loved how our hosts thought about each child by preparing a loot bag of things to help entertain them – such as fidget poppers and games.

The key to social outings with kids like T is to prep him ahead of time of what to expect, to not sweat the small stuff, and to not force him to do anything he doesn’t want, like taking photos.

He gets very cranky when we ask him to take photos when he’s not in the mood.

But it was wonderful when my friend’s daughters invited him to take photos together at the photo booth, which had many fun props.

I cherish these photos as his smile, as with any photo he decides to take, is pure and genuine.

The sweetness of the event was a welcomed contrast to the last few weeks of the new year – and to get dressed up and to celebrate a happy joyous occasion was a blessing.

Sharing Our Son’s FASD Diagnosis with Him

There are crucial conversations in life that stick out vividly long after they’ve happened.

Coming out when I was 14; telling my parents I was moving out; our wedding vows; the adoption worker telling us we were matched with T.

Over the Christmas break, I had two more: one that was planned and another that was unexpected.

A few days before New Years, I drove to my mom’s to deliver the news my sister had suddenly passed away that morning.

That was one of the hardest things I’ve ever had to do.

In comparison, sharing T’s diagnosis of fetal alcohol spectrum disorder (FASD) two afternoons before seemed like a walk in the park.

The anticipation was daunting.

We had wanted to tell him in the summer vacation before the new school year started but we decided to keep summer light.

We were then going to tell him in the fall, but my sister’s cancer took a turn for the worse and she moved in with us.

We decided Christmas break was going to be it – no more delays.

My sister was admitted to the hospital on Christmas Day, so it created some privacy in our home to share the news with T two days later.

It was the late afternoon, after a very relaxed day at home of play, play and more play.

I was resting in our room, when the hubby came in to lie down too – and not soon after, T came in and sandwiched himself right between us.

So much for my nap, I thought.

Then without a heads up to me, the hubby just went right into it.

He asked T if he knew what alcohol was. And T said he did not.

He briefly explained what it was and said that his mom had drank while he was in her tummy.

Then he asked T if he remembered being taken to Surrey Place a year ago to meet with the doctor (psychologist) to play games and answer questions.

T said he did and the hubby explained it was a series of tests that helped us learn that T had FASD.

I then said that a lot of people and kids have FASD – and it’s what happens when the baby’s brain is exposed to alcohol while they’re in the tummy.

We said that for him, FASD means he is hyperactive and has a hard time sitting still.

As I said this, he was squirming and doing his “fish worm dance” on the bed.

I explained that it also means he has a hard time with controlling his impulses.

As I said this, he was kicking me gently on my leg.

I also said that he has big emotions and FASD means that he has a hard time controlling those big emotions at times.

Lastly, I said FASD also means he has a hard time focusing at times – like doing his work in the noisy and busy classroom.

Funnily, he then went down to get a banana as I was in the middle of explaining this.

We told T that FASD is very common and that lots of people have it.

He then asked if we had it.

After we said no, he then asked if his cousin A has it and if that’s why she jumps around uncontrollably (stims) sometimes.

We explained that she has autism and that while it is different from FASD, there are a lot of similar things to think about.

He asked if that’s why he digs his hands and we said, yes, it’s probably related to him stimming, in the same way his cousin jumps around.

We told him FASD is nothing to be embarrassed about and he immediately responded that he’s not embarrassed.

I love how he said that so quickly and with such conviction.

We told him he has so many strengths – he’s bright, caring, funny, curious – and that these strengths will help him overcome the challenging parts of FASD.

We said that FASD is what makes him him and we are so lucky to be a family.

We ended off by saying that it’s a lot of info we just shared with him and that we will unpack it together because we’re a team and that he can ask us questions or share his thoughts anytime he wants.

To be honest, it was not quite how I imagined it going. I had it so planned and scripted it my head and this just felt so spontaneous and sloppy.

On the one hand, I kinda wished the hubby gave me a heads up he was going to launch into it.

On the other hand, it felt so cathartic to finally get it out there.

There is so much to unpack over the next few weeks, months and years for T and with T – but the seed has been planted.

I genuinely believe this will benefit him in the long run and help him understand his day to day and his interactions with the world.

During the latter half of our conversation, he came to give us both a big hug and told us he loved us.

When I asked for another hug, he told me to go away because “your breath stinks!”

Yup, T is T and we wouldn’t have him any other way.

Marshmallow Halo

Processing and understanding death is hard for kids. Sometimes, stuffed animals can help.

T’s Auntie’s – my sister’s – death a few days after Christmas was sudden and despite the unexpectedness, T is doing ok.

I continue to check in with him every day to see how he’s doing.

Kids often don’t tell you how they’re feeling, instead they show you; they don’t tell you they need you, instead they ask you to play with them.

On New Year’s Day, the hubby, T and I took it easy at home. We had been running around for two days getting the funeral organized.

T asked me to play with him. He gathered all of his stuffed toys – his “pets” – into the living room.

What started as a camping trip and roasting marshmallows over a fire spontaneously became a funeral service.

His poor seal – named “Love” – was just minding his own business in the living room when he got picked to be the one to die.

It was interesting to watch T act out what he thought would happen, based on what we’ve described to him – including him digging up a hole to bury Love.

A week later this morning, a few days after the real service, T and I played again. This time, T re-enacted his Auntie’s service to pretty accurate detail.

This week, his pets bid adieu to “Cookie” the whale – who, unlike Love, got a proper casket.

T set up formal seating for the guests.

In a separate room, just like the actual service, T set up a refreshments lounge for guests. The menu included fish. Yes, serving fish at a funeral for a whale – I adore this kid.

T also had a podium for guests to give eulogies – and he asked me to say a few words about Cookie.

He then decided to say a few words. For someone who doesn’t like public speaking, I found this interesting.

The comment that jumped out at me was when he said, “I really loved her a lot” – because he always refers to Cookie using he/him pronouns.

The hubby and I are not experts in grief – nor are we looking to gain more experience! – and we’re doing our best to help process this.

I continue to tell T there is no right or wrong way to feel, think or say how he’s feeling – the important thing is to try not to bottle it in and to let us know at anytime whenever he wants to chat.

I think this roleplay with his pets is healthy, because afterwards, he moves onto the next preferred activity.

The last few days reminded me of many things – one of which is that at his core, T is an incredible, kind, caring and good kid.

After Love the seal was cremated, T placed him on top of his toy garage, high above the ground.

He put one of his stuffed marshmallow toys on Love’s head.

“It’s a golden ring,” he said, “He’s an angel now sitting on a cloud.”

In the Arms of an Angel

Our family faced a sudden loss – for T, his first experience with losing someone – over the holidays.

My sister passed away last Thursday, a few days after being admitted to the hospital on Christmas Day, after a short and brave battle with cancer.

My family and I are still processing and making sense of this sudden loss. No matter how prepared we were, knowing we were on borrowed time, it still feels so sad and shocking.

T was her favourite person. Being his Auntie – a doting one! – was one of her most treasured roles.

She lived with us last Fall. I didn’t blog about it, as she loves to follow along T’s adventures and I wanted this space to be an escape from it all.

The last few months were so hard, stressful and exhausting. While we were happy to support her, it was beyond what the hubby and I were capable of. It disrupted T’s routine and affected our home life, sleep, mood quite seriously.

But I am glad we did it, because it provided her with comfort that she was not facing this awful illness alone.

In the earlier part of her stay, T and her enjoyed watching movies together in the family room and she would offer to help cook meals for him.

It is sobering and sad to now look back and realize just how quickly she deteriorated.

T displayed so much empathy, care and maturity during her stay – often going to her doorstep to tell her “I love you” or “I hope you feel better.”

But T, being T, also spoke his mind.

The funnier moments were when he’d go into her room and call her “Baldie” after the hubby shaved her head before she started chemotherapy.

The more serious moments were when T complained to her directly she was keeping him up at night because of her nonstop trips to the bathroom and her constant coughing.

The hubby and I would try to explain to T that while it was annoying and disruptive, she was not doing it on purpose and that she was only doing so because she was very sick.

About two years ago, T randomly asked me about death.

Before we invited my sister to move in at the end of September, the hubby and I decided we were going to be open and honest with T every step of the way, as it helps normalize things.

We let T know she was moving in because she was sick. We let him know that while we were hopeful for a miracle, she was also likely to pass away in the near future.

Watching T process things the last few months has been interesting, heartbreaking and ultimately something that makes us beam with pride.

I remember his school EA telling us T told her quite sadly, in October, that he didn’t understand why his Auntie was not getting better after he ran so hard for her at the Terry Fox Run.

T also went from having 1-2 night terrors a year to 1-2 night terrors a week when she moved in with us – a tell-tale sign of him coping with this huge sudden disruption.

We told T about her death after he came home from daycare. We were going to wait until two days later that weekend but he asked about visiting her and so we didn’t feel like we could wait.

He took the news well, although the next day, Friday, daycare staff said he cried.

In T’s mind, his Auntie is now an Angel sitting on a cloud with a gold ring over her head and has wings. And at nighttime, she is a star in the sky.

Honestly, I could not feel more grateful for how he is processing this.

We told T there is no right or wrong way to feel and to feel, think and say what he needs to – and that we are here for him at any time.

The hubby and I let T participate in some of the funeral planning. During a visit to the funeral home, we showed T the room where her service was going to be held and walked him in detail through the 4-hour visitation/service, so he knew what to expect the day of.

We told T what to expect his Auntie to look like when he saw her again in the casket in a few days – and explained that she would be cremated and what that meant.

We visited the cemetery and showed T where she was going to be buried.

The visitation and funeral service took place this Wednesday.

The hubby, T and I got there an hour before guests arrived to set everything up and to give T one-on-one quiet time with her.

While the hubby and I were reviewing the registration table setup, T quietly snuck up to her casket and shouted, “Boo!”

It startled us and we asked him what the heck he was doing.

T said matter of factly, “I just wanted to see if she was alive!”

God bless this child. Because the hubby and I burst out laughing. We really needed that laugh.

Then we told T he had better not do that when the guests arrived.

The four-hour visitation – with the funeral service held in the middle – feels like a blur to me now.

It was so nice to see many of her friends and our family come out to celebrate her life. I know she would’ve appreciated it.

And she would’ve been so proud of T.

He gave my Ma a hug when she arrived and hovered around her a few times to make sure she was ok.

He said he wanted to sit next to her during the service, because she was going to be sad, but he ended up sitting with my cousin’s similarly-aged children.

He sat through the 30-minute service, attended by about 75 guests, calmly and quietly.

My cousin told me that at one point, T put his hand on her daughter’s back to comfort her when she started to cry.

T’s doting Auntie surely would’ve been proud.

Believe in Your Goodness

Faith is not believing things will always work out but that you will be ok regardless of how they do.

It was an up and down week at school. So the start of the holidays was so welcomed.

T made a lovely note for Santa last night.

When he woke up this Christmas morning, he could hardly contain his excitement.

He even dressed up for the holiday occasion.

We went straight to opening gifts.

Among T’s bounty this year, included a Sonic plushy he had eyed during multiple visits at the mall and the new Sonic game for the Switch.

The hubby got me a black Power Ranger t-shirt and my favourite chocolates.

I got him his favourite chocolates and a book from his favourite author.

T had egg nog for breakfast and Whopper chocolates for lunch – and I didn’t bat an eye, because it’s Christmas.

I picked up and brought Ma over for hotpot lunch.

T asked her to cut him an apple while I finished prepping our lunch.

T also got a thank you card from Santa.

The note read:

“Dear T,

Thank you for the cookies and milk. How very thoughtful of you.

You have a wonderful smile and a caring heart.

Believe in your goodness, be kind and work hard – and great things will come your way in life.

Merry Christmas sweet boy.

Santa.”

This message was as much a reminder for him as it was for the hubby and I.

During the more challenging moments with school, it was easy to forget that at the core of this boy who gets disregulated and whose exhibited behaviour are related to a disability – is a sweet, caring, bright, funny child with so many gifts.

We got a Christmas greeting text from his school CYW this morning.

About two weeks ago, she got reinstated in his classroom to work with him 1-1 for the indefinite future – fingers crossed until June.

She has already made a difference, after several months of rotating classroom supports that has left T and everyone feeling frustrated.

She gets him and is achieving positive results.

We wished her a Merry Christmas and told her she is the best gift we as T’s parents could hope for.

Christmas to me has always been a season of reflecting on and restoring faith.

In recent years, and through this FASD parenting journey, the meaning of faith continues to evolve.

Today, it means that things may never work out the way we imagined, but we will be ok.

I enjoyed watching T open his gifts. Seeing his uninhibited joy is heart-filling. He gave me a big hug and said thank you afterwards.

Wishing you and your loved ones a Merry Christmas and all the best in the new year.

Everything Everywhere All At Once

In another universe, I’m a novelist and our son is disability free. Oh, the what ifs of the multiverse.

I watched “Everything Everywhere All At Once” this weekend, the Michelle Yeoh-starring film that is generating major Oscar buzz.

The film is about the multiverse, where infinite and different versions of the same characters exist.

The directors must’ve been on potent drugs, because this film is bonkers – converging multiple genres, like martial arts and animation, and has characters in one universe with hotdog fingers and in another universe, existing as stop motion rocks that converse in speech bubbles.

It is as insane as it sounds but it all comes together cohesively and at its core, the movie is a genuinely moving story about family and love.

After watching the movie, I couldn’t help but think about the concept of the multiverse – that there are infinite versions of my family’s life that exists, each a branch of a different decision made or circumstance.

In other universes, I am a teacher because I accepted the offer to the teaching program at age 19 instead of studying journalism; or I am a journalist because I pursued that career after graduation instead of working in libraries; or I would’ve published several novels by now, because I committed my focus to doing so.

In other universes, I am living in the Philippines, because my parents did not immigrate to Canada and the hubby and I do not know each other; or the hubby and I do not have kids; or we have children adopted privately and not through CAS.

In other universes, T’s mother is raising him because she had a stable life; or T does not have FASD.

In another universe, characters exist as stop motion rocks that converse in speech bubbles.

The vast mystery of universe is fascinating and humbling to think about – we are just a blink of an eye in the grand scheme of time and space and of the creator’s master plan.

It can indeed be tempting to think about the what ifs, especially when one is in the trenches.

But the one key message of the movie – no spoilers – is to embrace and be grateful for the here and now and what is in front of you.

And that’s how I’ve always embraced this happy, crazy, joyful and chaotic journey with T.

Because FASD is very much part of T and what makes him T – for better and for worse.

As the movie was reaching its end, T sauntered down the family room to find me.

He asked me earnestly, “When you poop, is it long?”

Yup, wouldn’t trade this T for another one.

He let me finish the movie then we played stuffed animal tag, a game we made up where we chase and hurl stuffed animals at each other.

The next morning, as I was cleaning up after breakfast, T told me to come to the living room.

He had created Daddy, Papa and T out of his blocks (see photo at top). He gave himself a Lego dog.

I amused myself with the thought that there is another universe where we all exist and love one another as Lego people.

T put Lego T petting his Lego dog on my work desk at home before he left for school this morning.

Cultivating a Learning Mindset

Fostering an attitude for learning is so important.

Kids with FASD face additional challenges and are often at risk of falling behind in school.

This year, Grade 2, has been challenging. We’ve had numerous calls with his teacher who is struggling to manage T in the classroom.

There are many factors we attribute it to, including a constant rotating door of classroom supports and unexpected disruptions in our home.

It’s hard for me to think about his recent comments about despite how hard he tries, he says he never has a good day at school.

The hubby and I believe T is bright and capable. It’s his hyperactivity, focus, impulsivity, self regulation, executive functioning that hinder him.

And they are no small challenges.

This is why the hubby and I continue to provide him with supplementary learning outside of school, to help bridge potential gaps.

The mind, regardless of impairments, is capable of growing and learning something new each day.

And here are some ways we’re approaching learning at home this school year.

Reading

Reading is something we keep up with every day, because it forms the building blocks for all other learning at school and in life.

We’re so proud of how far T has come and his teacher says he’s reading at grade level.

His teacher sends a book home every day, so it makes our jobs easy.

I borrow books at the library that T would enjoy – which currently are the Little Critter books.

We ended off the book by asking him quick questions to confirm his comprehension.

Math

Recent modules T completed on Khan Academy

I often read that math – and time and abstract concepts – is challenging for individuals with FASD.

Fingers crossed, T is good at math so far and he feels good when he gets the work done.

We set him up with Khan Academy, an amazing open source learning resource that covers a range of subjects up to the high school level, to practice with their math modules and he loves it.

It’s a great way to reinforce what he’s learning in the classroom and to catch up on things he may be missing due to environmental challenges.

Science

Looking up the school board curriculum is a helpful guide to figuring out what areas to focus on.

We focus on reading and math and try not to overdo it as weekends are for rest and fun.

But I do sneak in some science by watching short educational videos on YouTube that align with our province’s school curriculum.

I try to find videos no longer than 5 minutes, so they are digestible bites of information.

We sneak these videos in during drives to and from swim lessons.

The last few weeks, T learned about animals, including the mammal classification. I had a laugh when T was appalled that he and dogs were part of the same classification.

It’s also heartening to hear when he says stuff like, “I learned this already at school.”

I may rotate science videos with other subjects such as social studies as the school year goes on.

Outdoor and Physical Activity

I miss these summer hikes and can’t wait for next summer to arrive.

Kids with FASD, like T, are in constant motion and need lots of physical activity and outdoor time to burn off energy and regulate.

We go outside 1-2 times a day and during these cold winter days, I long for our long summer hikes.

We also started T with swim lessons this fall and he’s doing amazing. It’s so important for him to have opportunities to succeed and feel good about himself.

He’s interested in martial arts and we’re considering lessons, making sure we don’t overload our weekends, because self care is important too.

Focus on the Big Picture

T completed Level 1 of swim lessons today and will be moving onto Level 2 in January. 🙂

It’s important to remind ourselves of T’s strengths.

When we work with him one on one, we can see he gets the work. The trick is to work on his focus and to help him develop skills to minimize his frustrations – which is a challenge.

We remind ourselves that in T’s case, it’s a learning disability rather than an intellectual disability – an important distinction we’ve learned through this FASD parenting journey.

We remind ourselves to keep it relaxed – as hard as some moments can be – and that weekends and evenings should be prioritized for wellbeing, rest, fun and family time.

We remind ourselves to move at T’s pace and to adjust our expectations to minimize frustrations. This one is a hard one but on the days the stars align, it helps us keep our eyes on the prize.

And for those that are wondering, we haven’t shared T’s diagnosis with him yet. Life got unexpectedly hard and busy this fall.

The hubby and I plan to do so this holiday break. This will be an important milestone for our family – and one we are hopeful will help T make sense of his challenging moments at school.

I’m Blue (Da Ba Dee)

Our little guy got his hair done and he’s blue like Sonic the Hedgehog.

T had been talking recently about wanting to colour his hair.

After swim lessons last Saturday – where he did his first two consecutive laps for the first time! – we visited the barber.

T sat patiently for his turn and it was cute watching him sit calmly on the barber chair like a big boy.

This was only the third time T got his hair professionally cut. The first of which was two days after he moved in back in 2016 – which a bumpy experience (see below).

I wish I could get my hair cut sitting in a race car too.

Other than one other visit to the barber, the hubby had been cutting his hair the last 6 years, and has done a great job, while saving money too!

T had never shown interest in styling his hair, until recently. Last weekend, he wet his hair then styled it with his hands. It was a sign he was growing up.

It reminded me of when I was just a bit older than he is now, when Pa used to take me to the barber.

One time, we went to Chinatown and I asked for a mushroom cut, because that was all the rage in Grade 5.

Getting a haircut, in a way, is a bonding moment between father and son – and it was not lost on me that I was now in the father’s shoes.

While I stayed with T, the hubby went to get hair dye at the pharmacy next door, which he applied that evening at home.

We picked the colour blue because Sonic the Hedgehog is one of his favourite characters. He often races around the house and outside, like he’s the video game hero.

It started off well, until the dye started dripping down T’s face and, well, turned it a bit blue.

T freaked out and said he looked embarrassing and I wish I had a recording, because it was comedy.

But thankfully, the hubby rubbed it off with baking soda.

And you know what, T looked amazing!

The next morning, he even let us put gel on and he said many kids at school commented on his hair.

By Tuesday, he was back to not caring to style his hair. And that’s ok. We’ll hang onto our carefree 7 year old for a wee bit longer, thank you very much.

Shit Happens

The things we do for love and the funny ways that love clicks with our little guy.

Earlier this week, I walked into T’s room and it smelled rancid, like the room had been fertilized.

After sniffing around, I found the culprit: T had an accident and the soiled pants were in his hamper.

Thankfully, these accidents are rare. Unfortunately, because I was unlucky guy who stumbled upon it first, not the hubby, I had to clean it up.

As parents, we put up with a lot of shit in the name of love – but this was taking the analogy too far.

It reminded me of when I was younger and still lived with my parents. Pa was in his 80s and was having issues with making it to the bathroom.

One night, he didn’t quite make it in time and he started freaking out.

Being younger at the time, I thought, “Oh hell no.”

I shut off my lights and went to bed. Poor Ma had to clean it up. I only got up discretely to cover the crack under my door with towels because the stench was coming into my room. 😂

I thought with amusement about that moment as I cleaned T’s pants and underwear, scrubbing them under our bathroom tap.

It was unpleasant but I didn’t die. The last seven years of being his parent have desensitized me to certain things, like poop.

T walked in and when he realized what I was doing, he was horrified and mortified.

“That’s disgusting!” He said.

I told him this shows just how much I love him. “I love you so much I’m cleaning up your poop with my hands!”

It was one of those rare moments when T was caught speechless. But it only lasted a moment before he went out.

I made a note to get him back one day. It may take decades of patient plotting, and lots of Metamucil, but I’ll get him good one day.

During bath time that evening, I lied down on our bed, which was diagonal from our bathroom.

Before he stepped into our shower, he poked his head out and said sweetly, “I love you.”

Play Date

A rainy Sunday morning at a McDonald’s Playspace was just what the doctor ordered.

One of the biggest changes in T’s school life happened earlier this year when his CYW in SK and half of Grade 1 moved to a different school.

We all felt the loss of this wonderful person, especially T, and it was a hard important lesson in moving on from change, which is often hard for individuals with FASD.

But we kept in touch and met up for the first time today since she moved.

T was looking so forward to it and even got changed this morning without prompting.

It rained all day so we met up at McDonald’s. We met the CYW’s husband and their son, now 3, whom we first met as a baby online during virtual schooling in SK.

I was feeling blah still – I was off sick Thursday and Friday – but seeing T have fun with O, the child, brightened my spirits.

Prior to being T’s parent, the whole world of school supports was foreign to me.

I now have deep gratitude and appreciation for how support staff maximize a child’s success.

Instead of working 1-1 with grade school kids, the CYW now provides school-wide support to teens at a high school level.

It was interesting and sad to hear about rising mental health issues amongst teens, phone addiction and online bullying.

Thankfully, teen years are still years away and T’s priority is having fun in an indoor playground.

It was adorable watching T play with O, who was shy during his first indoor playground experience but enjoyed watching T zip by.

I was amused by how T got frustrated when O didn’t listen to his every beck and call.

“Hmm, a kid that doesn’t listen,” I said out loud, “I can’t imagine how frustrating that must be.”

The grown ups all laughed but T was not amused.

After two hours of catch up, we parted ways.

We gave his CYW two boxes of T’s old clothes. It’s nice to know they will go to a good home and kid; many items were hand me downs gifted to T.

T gave O, the CYW and her husband big hugs. Then he went back and gave O another big hug before finally getting into the car.

I Believe In You

How you see yourself makes a huge difference in how you experience the world.

The hubby and I had our first parent-teacher interview last Friday with T’s Grade 2 teacher.

The conversation focused on T’s challenges: focusing and completing his work; avoidance behaviour like taking long bathroom breaks, and social interaction.

I felt deflated, because I went into it feeling good as we received a mostly positive progress report card a few days before.

Academically, T is progressing well, and especially well with math and science. But T’s teacher noted he needs improvement with organization, collaboration and self regulation.

None of this is surprising as his FASD diagnosis identified these three impairments.

But after some sleep and distance, I feel ok.

Why?

We’ve been through this conversation before: different year, older child, same issues. But we find a way to move beyond each speedbump.

The conversation reminded me about one of my goals – to foster self belief in T.

As an individual with FASD, this world will wear T down – more so as he gets older – whether it’s due to a lack of understanding, patience, stigma.

Even T recently shared with the hubby and I that he never has a good day at school and he’s always being bad at school.

That comment made me sad, because this is no doubt how he sees his experience at school.

I reminded T we all have bad days but T is not a bad kid. He is smart, caring, funny and a good kid.

This Fatherly articles notes that children develop self esteem as early as 5 when the brain starts to develop thought patterns known as schemas.

It further notes that experiences and feedback shape schemas and that “depending on the experiences and the feedback being given, negative schemas form and become harder to correct over time. The right messages make as big of a difference as the wrong ones.”

We do our best every day to remind T of his strengths and to build on them and his interests.

I believe in giving positive reinforcement and feedback – so long as it’s sincere and earned.

I also want T to develop a mindset of wanting to do well regardless of positive feedback or setbacks.

It’s not easy and the hubby and I struggle with his on a daily basis. We see him at his best and worst.

But we remind ourselves of how much he’s grown.

During bedtime last Sunday, T randomly said 20 + 30 = 50.

So I took it as an invitation to play a math game and gave him other questions to try, even 3 numbers, such as 10 + 20 + 40.

T enjoyed the drills and asked for it during the drive to school and every bedtime since.

What these precious moments in the dark at bedtime, with his head rested on my chest, remind me is this kid is awesome.

He just needs to remember it and we need to find and foster ways for him to believe it.

The Grinch

On the annual day that we put up our Christmas tree, a real-life Grinch almost stole our cheer.

It’s tradition to put up our tree the day after Remembrance Day. We remind T to honour veterans first before he goes nuts with Christmas.

Three things, after all, get T super excited: Christmas, Halloween and his birthday.

This past Saturday got off to an unexpectedly terrible start when we discovered that someone had broken into our car the night before.

Thankfully, there was no damage to the car, but the thief took the hubby’s prescription glasses, which he needs to drive.

We live in a safe boring working class neighborhood, so for this to happen – and to the house across the street – felt creepy.

We felt violated knowing strangers were in our car and T was livid and demanded the thieves be brought to jail to sit on the electric chair.

We stopped by a hardware store later that day and the irony of these Grinch toys was not lost to me.

I always try to find the positive in any situation and as infuriated as I was, I saw the silver lining in the teachable moment it created.

It showed T the upsetting impact stealing has on those affected – something we find ways to reinforce after his recent lollipop incident.

The hubby and I were also mindful about role modeling calm and resiliency – so we showed T how we responded to the situation, including the hubby filing a police report.

T was upset when I told him the thief was likely not going to be caught. I told him that as upset as we are, we need to move on – and more importantly, we need to learn from these moments.

Specifically, we will not leave our car in the driveway nor leave valuables in the car.

After we came home from swim lessons, we put our upset faces away.

We took out the tree and ornament boxes from the basement and got to work.

The hubby put on a vinyl Christmas album on his childhood Fisher Price vinyl record player.

T did a great job helping decorate the tree, doing more than half of the work this year.

The final decorated tree looks wonderful, ending the unexpectedly terrible start of our day with Christmas light, hope and cheer.

Out of the Blue

Hidden truth, isolation, confusion. Things fog symbolizes and it enveloped us for two days.

As autumn weather arrives, so does morning fog.

It was beautiful and eerie to walk through in the dark Thursday morning, as I headed to work (pictured at top).

My head felt foggy the past week, resulting from recent sleeplessness due to things beyond my family’s control, as well as T’s recent challenges.

In these moments, things feel overwhelming and one small thing can be like the straw that breaks the camel’s back.

“We don’t yet see things clearly. We’re squinting in a fog, peering through a mist. But it won’t be long before the weather clears and the sun shines bright!“
– 1 Corinthians, 13:12

When I enter a foggy moment, when the view is obscured, my surrounding feels cut off, and the ground feels shaky, I remind myself this is temporary.

I accept that my capacity to address the demands on me is finite and I’ve reached my current limit.

And to breath, because it always passes.

And to refocus on self care.

Get quiet alone time
Go to bed early
Set boundaries with people
Exercise
Enjoy something mindless and fun
Listen to music
Go for a walk
Let go of things you can’t control
Practice gratitude and prayer

Sure enough, by Friday, the fog lifted late morning and the beautiful sunshine came out.

After work, I went for a gym workout, listening to uplifting trance music, including a favourite song by Dutch DJ Ferry Corsten, “Out of the Blue.”

It felt reinvigorating.

On Saturday, the hubby gifted me four hours of free time by taking T to the movie and I napped and watched TV (I highly recommend new horror film, “Barbarian” – so good!).

On Sunday, I returned the favour by going on a hike with T at the Bluffs.

The weather was lovely, probably the last 2022 weekend when we could wear shorts.

It was calming to hear the waves.

Tonight, I made a thank you meal for the hubby, one of his favourites: chicken parmesean.

Like chicken soup, making it was good for the soul.

I used Panko for the first time and it was great.

Second Chances

What parents won’t often admit: When they ground their kids, they are punishing themselves too.

After T’s unfortunate incident with taking the lollipop from the store, we grounded him last weekend; no electronics and he would not have his Halloween decor, bought on the same trip to the store, until next year.

It may seem extreme, but we felt it was important he understood the severity of his actions.

By grounding T, we were indirectly punishing ourselves. Giving T tablet time is a way to give ourselves free time throughout the day.

But we stuck to our guns and had an ok weekend. Last Sunday, we went for three walks. If inmates get outdoor time, surely our guy is allowed!

At the end of last weekend, T asked if we were still mad. I told him we were not happy about what he did, but we love him and we focused on the positive: he returned the lollipop, apologized, and he learned an important lesson.

I spoke about this incident during my recent checkin with my psychologist, who specializes in children with special needs.

We had an interesting chat about punishment vs discipline. What I got out of it was to match the consequence with the severity of the action, otherwise the punishment overtakes the lesson.

Research has shown that discipline can be challenging with kids with FASD, as they have difficulty understanding cause and effect.

I’m not sure I agree with that, but also, while I’m an expert on T, I’m not an FASD expert and I’m learning new lessons every day.

Regardless, what I got from this recent experience is the importance of focusing on the lesson, because that is what will matter in the long run, once the anger, shock and sadness has passed.

Roasted seeds yielded from 5 pumpkins. 😋

Just like every day is a new day for kids like T, we must believe in second chances.

This past weekend was more fun and relaxed.

T did great at swim lessons and his instructor said T will move up to Level 2 for the winter session.

We met up with friends for lunch then dropped off a care package for a friend.

T and I went to buy Halloween candies. On the way into the store, T gave a twoonie to a panhandler and on the way out, he said bye to the man, who appreciated T’s kindness.

This past weekend was grounding for me.

It reminded me to take a step back – as with every negative situation in the past – and look at the big picture: T is a great kid finding his way in the world. I believe he learned an important lesson.

We are aware of the possibility of future incidents, but it’s time to move on from this one.

The hubby and I told T he had a fantastic weekend, did great at swimming and we reminded him that he did a good thing by returning the lollipop.

For all his efforts, we told him he could get his decor back in time for Halloween.

Goodie bags the hubby prepared for Halloween trick o treaters! He’s so extra and that’s why I love him.

This morning, T woke up excitedly with no fuss, got changed into his costume for school – Master Chief from the video game, Halo.

Tonight, he finished his reading homework in speedy time then went out for trick or treating.

We got home by 7 pm and he spent the rest of the night handing out candy to trick or treaters. One kid had the same costume as T which got him super excited!