My Life With T

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!

Having fun at someone’s well-decorated home.

The Boogeyman

This is a very hard post to write, but I’ve learned that fears die down when you face them.

I’ve been enjoying the ramp up to Halloween – recently catching a matinee of “Halloween Ends.”

Yesterday night, a real horror scenario played out: T took a lollipop from a store without paying for it.

This may sound trivial but this is triggering for me, because stealing behaviour is common for some kids with FASD – and I’ve long dreaded this.

The evening started innocently: T and I were shopping at the dollar store for Halloween decor.

At the lineup, he walked away. When I went to look for him, I saw him slide his hand into his pocket.

Not thinking anything of it, I later saw a lollipop poke out. I questioned him and he said it was given to him by daycare.

It felt off but I didn’t want to create a scene. In the car, I grilled him and he confessed he took it.

I was livid and I told him what he did was wrong and is considered a crime.

I was in shock and my reaction was to drive home. T had a meltdown because he thought we were going to jail after I said the word crime. I was so upset I let him sweat until we got home.

The horror film “Halloween” tells the tale of Michael Myers who escapes from an asylum and goes on a killing spree, targeting babysitter Laurie Strode, with psychiatrist Dr Loomis in his pursuit.

Laurie is horror’s most famous “Final Girl” and she referred to Myers as the Boogeyman, a word synonymous with things we deeply fear.

As a parent of a child with FASD, the invisible disability itself is my Boogeyman.

When we first learned about T’s FASD prognosis, the things I read up about it horrified me, specifically high risk for aggression, mental health challenges, run-ins with the law.

I read with empathy of other parents’ struggles, including challenges related to stealing behaviour.

If a horror movie fan was to judge T based on the challenging behaviours he can exhibit, they wouldn’t peg him as the “final girl,” the virtuous character who survives the mayhem.

Thankfully, what the FASD parenting journey has taught the hubby and I is that our kids don’t follow the standard narrative, nor is anything about this life journey standard.

Once we understand “brain not behaviour,” the chaos makes better sense.

In T’s case, FASD impairs his executive functioning and makes him very impulsive, which is how I’m explaining what happened at the store.

To be clear, I’m not making excuses for him. I am still very pissed and sad about what happened – but I’m trying to view it from the eyes of a child with an invisible disability.

In our horror movie, T is the final girl being chased endlessly by the boogeyman of FASD – and the hubby and I are Dr Loomis, his external brain.

Invisible Disability Week took place this past week.

Our fear of the Boogeyman is so powerful, because it is unseen and unknown – leaving our imaginations to fill in the blanks and make it larger than life.

When I think about FASD, the hubby and I have come a long way with our relationship with it, because we have learned and experienced so much, and been blessed with wonderful supports.

The invisible became visible. What was once unseen is now seen. What once seemed unknown and scary seems less so, although not necessarily easier to deal with, just to be clear.

A great video for parents dealing with stealing.

When we got home from the store, T dashed out of the car, into the house and hid in our room.

I sat by myself in our dining room trying to collect my thoughts. I was so flustered.

After the hubby logged off work, I told him that we were driving back to the store, T was going to go to the cashier, tell them what he did, return the lollipop and say sorry.

That’s exactly what we did – and T was cooperative.

I will be honest, I felt nervous and mortified, but I knew this was the right thing to teach T – and it was about facing my own Boogeyman.

T handed the lollipop to the cashier and said, “I’m sorry I stole the lollipop.”

As we left the store, we praised T for doing the right thing. We also reiterated what we did was wrong and that he was grounded for the weekend with no electronics or his favourite snacks.

The hubby and I are aware this could happen again. As his external brain, we will remind T about expectations going into a store, supervise him and do an inspection before we leave.

This may sound over the top to parents of neurotypical children, but for us, it’s about helping our T succeed.

“Halloween Ends” is the 13th film in the franchise and just like Michael Myers never stays away and comes back in endless sequels, the Boogeyman of FASD will always be a part of T’s life.

But I still believe – even if part of me feels deflated by what happened on Friday – that T will still emerge as the “final girl” in his story.

Through supports, accommodations, intervention therapies, awareness raising, advocacy, the invisible Boogeyman in his life will become more visible and the fear will die down, giving us the courage to face the ongoing challenges.

Today, Saturday, was a trying day, but we stuck to our guns and he was grounded.

We took T to swim lessons. He did an amazing job.

In the afternoon, I took him to the park and enjoyed watching him initiate play with a group of boys.

As I watched him laugh and smile, I reminded myself that he’s just a kid, trying to find his way in this world with the cards he’s been dealt.

And for that one moment, I told the Boogeyman to fuck right off.

On a Night Like This

When the unicorn of a night out without T presents itself, I grab it by the horn and go for a ride.

Going into parenthood 6 years ago, I knew weekend night outs by myself would be rare.

When we do go out, it’s usually with friends; company that we enjoy.

Parenting a child with FASD/ADHD is exhausting – physically, mentally and emotionally – and I’m a proponent of self care and alone time.

A few weeks ago, a grade school friend visited from the UK and our friends got together for dinner.

We enjoyed yummy sushi and it was wonderful having adult conversation and not having to look to my side to see what T was up to.

Afterwards, we stopped by a bakery in our old neighbourhood to browse the decadent treats.

As thanks for giving me a few hours to myself, I got the hubby his favourite strawberry slush bubble tea as takeout.

I parted way with my friends at 9:30. As I drove home, I blasted Kylie’s “On A Night Like This,” which still sounds like pop heaven 22 years later, and amused myself with the thought of how much life has changed with T.

In our 20s, the hubby and I would just be getting ready to go out at 9:30 for a night of dancing and drinking with friends.

Now, 9:30 is past my bedtime and when I start turning into a pumpkin.

A fun night on the weekend now is about time spent with the hubby and T, or eating with friends, or sitting around a campfire in summertime.

Life is centered around T now. For better and for worse, I feel thankful for this.

I made it home just in time to help tuck T into bed. It was a good reminder that absence, even for a few hours, does make the heart grow fonder.

“On a night like this,

I wanna stay forever.”
– Kylie Minogue

Secret Sauce

Asian cooking and special needs parenting have one thing in common: assembling your ingredients.

Hear me out. I have not gone off the deep fried end; not yet, anyway.

As parents of a child with FASD, the hubby and I have learned so much.

We’ve been blessed with help to create a toolkit of ingredients to support T’s day-to-day life:

Therapy and early intervention – Speech, occupational, behavioral
School accommodations, supports, advocacy
Medication
Consistent routines – At home, school, on weekends
Self care strategies – Exercise, diet, sleep, counseling, outdoor time, hobbies

Every child is different, so the mix of ingredients – the secret sauce – to respond to each situation will differ.

Asian cooking is similar in it’s often down to the sauce.

Cooking is a self care hobby and I’ve created a toolkit of staple ingredients:

Light soy sauce and dark soy sauce – There’s a difference, as I’ve learned
Cooking wines, such as Xiaoxing, mirin
Oyster sauce
Hoisin sauce
Vinegars, like white, black or rice
Spices, such as Sichuan peppercorn, five spice, curry powder, star anise
Corn starch – Great for thickening sauce
Fish sauce

It’s therapeutic to visit the Asian grocer and slowly browse the aisles.

Only in an Asian grocer do they have an entire aisle just for soy sauce. All affordable options too!

Like raising a child with FASD, Asian cooking is a combination of following a recipe, working with what you have, experimenting, having fun.

And if the dish doesn’t work out as imagined, it gets disposed off later the same way anyway. 😆

Here are dishes I recently enjoyed making:

Chicken Ramen

So excited to have made ramen eggs!

Mongolian Beef

I learned the technique to making tender beef: slice the beef diagonally against the grain and mix it with baking soda.

Garlic shrimp pasta with green onion pesto

The green onion pesto gave a nice Asian twist to the spaghetti.

Mango Curry Chicken

Mango Curry Shrimp

I had leftover sauce from the meal above, so I made a shrimp stir fry. I don’t like to waste. 😊

Braised Beef with Daikon Radish

This was a comfort meal growing up and I was happy to have replicated it with the Instant Pot.

Chicken Fried Rice

Chicken Congee

A simple soothing meal via the Instant Pot.

The Traveller

What’s the meaning of a name and does it express one’s desire in life?

For social studies this week, T completed an assignment that asked to research his name.

It turns out one of the meanings is “traveller.”

To see the world was one thing the hubby and I prioritized during life before T.

Traveling is harder to do as parents but we find ways to have adventures with T.

Valuing experiences over things is something we instill in T – and I wish to see as much of the world with T.

I wish for T to experience everything the world has to offer – with or without us – and to not put a limit on where life takes him.

When we learned his name’s meaning, I thought back with a smile to our adventures: camping, roadtrips, Spring Breaks.

I feel thankful for these opportunities and I look forward to the adventures ahead.

Parenting a child with FASD is also about traveling on an emotional journey – the biggest adventure of the hubby and my lives.

It challenges us like a difficult hike, but the views at the peaks are so rewarding.

Part of travelling is also taking time to rest at pitstops and give thanks for the journey.

Today, on Canadian Thanksgiving, we are hosting a small family dinner.

We got up early to start cooking and cleaning.

T got his reading work out of the way in the morning – a blessing as this can often be a painful prolonged task.

I paused to give thanks for the great progress he’s made with his reading, especially when compared to just a year before.

Afterwards, we enjoyed a walk while the hubby prepared the turkey.

After lunch, I snuck away to enjoy the endorphin rush of a gym workout.

When I got home, T was in the yard, alternating between playing with fallen leaves and helping the hubby with yard work.

Family arrived at 6 and we sat down to enjoy a hearty meal.

As I took things out of the fridge, I paused to look at T’s Thanksgiving school activity, on which he wrote: “I’m thankful for my dads.”

We feel the same way, T.

His writing needs practice, but the heart and spirit are there. 😊🙏 I just noticed on the top left, he tried to write “I’m thankful for Taco Bell.” 😆

Wherever you are joining from, I want to wish you a happy Thanksgiving. May your travels be blessed with joy and adventure.

Cross Country Race

Our little guy competed in his first cross country school meetup today.

For a kid who is endlessly active, gym is a class T struggled with the last few years.

For his mid-year report card last year, his gym teacher gave him an “I,” as he didn’t participate enough for her to give a proper assessment. He ended the year with a C+.

But she does try to find ways to engage him and suggested that he join the school cross country team this year.

Today’s meetup took place at Earl Bales Park, near our old neighbourhood. It is a city park with a ski hill that runs a mini chair lift in winter!

We’ve gone hiking there many times and here was T charging up that ski hill in Fall 2018. I saw my life flash before me when I made it to the top.

So we felt hopeful T would do well today.

We reminded him the most important thing was to try his best, have fun and to pace himself and not burn all his energy at the beginning.

Well, T did amazing.

He finished in 8th place – and the first from his school – in the Grade 2 race.

We are so proud of our guy!

The hubby took the day off to spend with him. His teacher not so subtly told us that it’d be wonderful if we could come to cheer him on.

Never one to mince words, the hubby was like, cut the crap, you want us to supervise him. He got to ride a school bus with little kids today. 😂

All kidding aside, I’m glad the hubby got to witness this proud moment and that T got to see Daddy cheer him on at the finish line.

Today is an excellent reminder of what is possible when schools find ways to identify strengths in their students and create opportunities to build their confidence.

Walking Towards Hope

Inspiration exists in all forms and they are so important when traveling down unpaved road.

Thanks to our FASD service provider, the hubby and I recently joined a cohort of parents and caregivers for a weekly support group.

It’s an 8-week pilot initiative hosted by Surrey Place, an amazing organization that has supported T since his toddler years, including providing his assessment and diagnosis earlier this year.

These virtual sessions take place over the lunch hour, which is great, as I can join from work.

The sessions are informal, with short presentations, resource sharing, and time for parents to ask questions and to meet special guests.

During the fourth session this session, we had special guest, Myles Himmelreich, an individual with FASD.

When we first received T’s prognosis six years ago, it was quite the emotional punch, and we went through the usual cycle of grief.

I tried to search for success stories. They were few and far in between but Myles’ story repeatedly came up over the years.

So it was so wonderful to meet him.

He spoke about what it was like to live with a brain and body disability, covering similar points from this video he filmed years ago.

It was refreshing to hear his candor about his struggles and reassuring to hear about his many successes, including his work as a motivational speaker which takes him all over the world.

Even though we’ve read and learned a lot about FASD over the years, it was still sobering and heartbreaking to hear Myles speak about his many struggles – being misunderstood and unsupported at school, drug use in his adolescence, homelessness in young adulthood.

During the Q&A session, one parent asked him for advice on how to help kids who threaten to hurt themselves. I listened intently as the hubby and I see some these behaviours emerging in T when he’s very disregulated.

I asked Myles for his advice on friendships, as this is an area where T struggles, and the two-year disruption of the pandemic certainly wasn’t helpful in this regard.

What resonated with me the most about Myles’ message to parents was the importance to create a safe, supportive and accommodating environment in helping kids like T to thrive.

I left the session feeling recharged.

I have no doubt there’ll be lots of bumps along the way, especially as T enters adolescence, but it was inspiring to see there are positive outcomes ahead, thanks to individuals like Myles.

Our service coordinator let us know they are looking at piloting other initiatives in the near future, including meetup events for families and kids, like outdoor hikes and equestrian therapy, and possibly an opportunity for kids like T to meet role models like Myles.

I think this is so important, not just for parents and caregivers, but especially for kids like T. To see that there is a path, many paths, that lead towards hopeful and positive outcomes.

Rain

God bless the innocent unfiltered honesty of children.

During a drive to a family lunch today, there was torrential downpour.

The visibility was bad and the conditions got quite dangerous at one point.

Suddenly, T says matter of factly, “Good thing I don’t live with my mother. She’s homeless. I would be soaking wet!”

T’s birth mother, in fact, is homeless and because she was unable to take care of him, he was put into foster care and eventual adoption.

We’ve told him bits and pieces about her, whenever he asks, because it’s important to be open and honest about his past, so he can move into his future with a complete sense of self.

He brings her up from time to time, often during the most unexpected moments – like this one.

I will admit we laughed at his comment, not because we are making light of his mother’s situation, but because kids are so honest.

If you add FASD on top, you never know what’ll get blurted out!

On the drive home, I brought up T’s earlier comment.

I reminded him that while his mother has a sad life, it is thanks to her T, the hubby and I are a family.

And for that, we’ll always be thankful.

Reading Buddy

We’re experimenting with our little guy’s love of younger kids to build his reading and social skills.

At the start of every school year, I watch and reflect on this “Common Strengths of Students with FASD” video by social worker Dan Dubovsky.

It’s apparent T loves younger kids and they bring out his patient and caring side.

Kids with FASD generally do better with younger kids; one reason being related to dysmaturity.

One of my favourite moments during daycamp pickup this summer was watching T walk with the kinder-age kids from their outdoor play area to the school and holding the door open as they walked in like ducklings with the staff.

We think it’s a blessing T was placed in a Grade 1/2 split class, as being around younger students can be socially beneficial.

I thought about the daycamp moments as I recently completed the questionnaire his teacher provided to start his Individualized Education Plan.

I suggested to T’s teacher whether she’d be open to having T visit the kindergarten class from time to time this year to be a helper, an idea sparked by Dubovsky’s video.

We think being a “big brother” to little kids may also boost his confidence and self esteem.

Reading is a skill we continue to work on with T. He’s made steady gains and we want to maintain and build on his momentum.

One of the best ways to learn, research has shown, is to teach a concept you’ve learned to others.

So I also suggested T could be a reading buddy to younger students.

I sent these suggestions to T’s teacher with zero expectations and made it clear there’s no worries if these are not feasible at this time.

His teacher responded and said she liked the idea. Visiting the kindergarten class is unlikely at this time because they are still settling into the year.

But she said there are younger kids in T’s class that need help with reading and she’ll ask T if he’s agreeable to helping out.

I was thrilled as it was more than I expected.

Parenting a neurodiverse child is about keeping an open mind and trying things out; about building on successes and moving on when things don’t work out, because they often don’t.

But never giving up on trying differently rather than harder.

I have zero expectations of how or where this “reading buddy” idea will go from here, or if the idea will even have liftoff.

But the seed’s been planted and all we can do is to hope, try, and to keep trying.

Ferry ride during July weekend roadtrip to Tobermory.

Guiding Light

Earlier this month, Pa would’ve turned 100.

I thought about him when T had his first swim lesson.

T’s always loved the water. The outdoor pools saved our pandemic summers and T loves swimming in lakes during our outdoor adventures.

He’s very comfortable in the water and it was time he learned proper swim technique.

We found a school that offered smaller classes, a teacher-student ratio of 1:3. It was a sound investment to support T’s ADHD.

The first lesson took place after the first week of school. T’s excitement was palatable.

He got up on a weekend at 7 am and when it came time to leave, he got changed and brushed his teeth on his own with no fussing.

Who was this kid?!

The lighthouse at Presqu’ile Provincial Park during our recent camping weekend.

When we arrived at the school, we reminded him about “listening ears” and to have fun.

The hubby took T to shower then left him on the pool deck.

We sat in the parents’ viewing area. I was impressed T stood patiently for five minutes until his teacher called him into the water.

I was so proud T followed instructions. Every time he finished his task and looked towards us, we waved and gave him thumbs ups.

His kicking, breathing and strokes need practice – and that’s ok. He will get better with time.

As we sat for the 30-minute lesson, the hubby and I reminisced about taking T to parent-child gymnastics five years ago – and how we hated it.

We would alternate classes and dreaded our turn – because we’d get more workout than the other kids, because T never sat still and we spent the entire hour chasing after him.

It was when his FASD first started to feel real. I got so mad by the end of those classes – and once snapped at a meddling mom. 😂

T has come a long way since. We’ve come a long way since.

Watching T take his swim lesson from the viewing area reminded me of when I was 9, a bit older than he is now, and Pa did the same for me when I took swim lessons.

Life truly is a circle. I’ve transitioned from the child and learner into one of the guiding lights in T’s life, a role Pa once held.

Putting T in swim lessons is not just for building a needed life skill, but to also help build his confidence and self esteem, while having fun.

Just like when I took swim lessons as a child, the hubby and I celebrated the end of T’s lesson by going to McDonald’s for lunch.

During the car ride, we told T he did great – and the most important thing of all, it looked like he had a lot of fun!

And he said that he did have fun indeed.