Far From Home

During the holidays, I unexpectedly flew to the other side of the world to visit my ailing Ma.

Ma moved back to the Philippines in July. In early December, her myositis autoimmune disease, which attacks and weakens her leg muscles, resurfaced and a few days before Christmas, she had a fall at home.

On Christmas Eve, a few days after being admitted to the hospital, I had a video chat with Ma.

She did not look well – very weak and no fighting spirit, as she has been struggling with grief after my sister’s death. So I decided to go see her in the event this would be a goodbye visit.

2023 was a year of many losses, so with this latest incident, Christmas Day was very stressful.

I worked hard to muster enthusiasm to open presents. I then kept to myself as I processed Ma’s situation and the idea of leaving the hubby and T for nearly two weeks, the longest we’ve been apart.

The hubby was so supportive and let me have Christmas Day to myself and he helped book my flight and pack.

Stress makes the mind play awful tricks and I thought of every worst case scenario.

Then I took very deep breaths, had a good sleep, and got up on Boxing Day with a game plan.

I prepped for my trip – which included creating an away and return plan for my unplanned time off work, doing long-term groceries and prepping dinners (e.g. marinated meats) for the hubby to minimize his work while I was away.

Parenting a child with FASD is hard work, much less doing it on your own while in the midst of a very busy period at work.

I flew out the following evening and T was in a super foul mood that day – screaming, swearing and disregulated.

In the afternoon, I suggested we go for a walk in the rain and stomp on puddles to calm down.

During our long walk, T stopped and started his sad whimper. His eyes watered and his pouting lips quivered. That was when it hit me: he was sad and upset that I was leaving.

I felt awful because this trip came together very last minute and T got no warning. He’d already had a year of many losses and I could imagine what my departure must’ve seemed like to him.

I reassured him it would be a short visit – and it was important I see and help care for Ama.

When we got home, we played a bit more together then I got him fed and showered before we left for the airport.

When we arrived at the airport, T gave me the longest hug and I did not want to let him go.

The hubby told me by text, after they got home, that T cried in the car as they drove off and kept watching a 2-second video he filmed of me saying bye as they drove off.

You can only imagine how my heart ached!

I too read this text over and over again during my flight. How I miss them both so much.

As I waited for three hours to board my flight, it sank in how long I was going to be away from my family.

As we started to board, it sunk in how little I was mentally prepared for the 17-hour flight.

As our plane departed shortly past midnight, I looked down at the city. Little did I realize at the time the journey that lied ahead.

A selfie I sent to the hubby shortly before boarding.

The Gift of the Redo

Christmas is a time for forgiveness and it is the kindest gift one could give and receive.

When we were having rough patches this fall with T – a part of the FASD parenting life – we met with our developmental pediatrician, who has been supporting T since he was 18 months.

In addition to adjusting his medication – mostly positive results so far – he suggested the idea of the redo.

It’s a simple premise: when T or the hubby and I have a bad moment, such as a tantrum or meltdown or less than ideal words are said, we let the moment pass and try it again from the top.

Writing Santa a letter the morning of Christmas Eve.

Lots of deep breaths and trial and error later, it is mostly working out nicely.

We even have T telling us sometimes that he’d like a redo after he has a moment.

Life is not perfect nor do we expect perfection in our wonderful chaotic parenting journey.

We try hard to remind ourselves it is the disability that wears us down, that we get upset with – not the child that tries his darned best everyday.

In hindsight, I attribute most of the rough patches this fall to changes in T’s medication and structures at school (e.g. his CYW support went from full time to part time; changes in daycare staff) and increased academic demands.

I am very proud of him and his progress and that he ended the fall term on a positive note.

T is obsessed with this obnoxious web series called Skidibi Toilet and our lovely Daddy found Skidibi Toilet wrapping paper for him. 💕😆

I’m not a religious person but I do believe in a Creator. I love the message behind Christmas, a symbolic time to forgive.

Forgiveness also extends to oneself.

I can be hard on T but I am the hardest on myself – the guilt and regret of not responding the best to a situation eat at me.

So it’s a kind and compelling message to receive that us parents can have a redo too.

I enjoyed reading fellow bloggers’ holiday updates and I’m happy to add we had a wonderful Christmas too (there are some not-so-happy updates, not involving T, that I’ll share later!).

We had Christmas Eve dinner at my uncle’s home and T enjoyed spending time with his Uncle J. He was disregulated at the end of the night, but that’s the beauty of the redo: tomorrow is a new day.

T got us up bright and early on Christmas Day to open gifts.

As I watched him open gifts, I thought what a blessed gift it is to experience life with the wonder of a child that still believes in Santa and the magic of the season.

“I Believe in the Power of You and I”

We attended T’s wonderful school holiday concert this week and it moved me to tears.

The school concert was the first since the pandemic, and T and the kids did such a great job.

It brought back wonderful memories of holiday and Spring concerts, pre pandemic, when T was in preschool and kindergarten.

I remember we used to be so worried about T running amock on stage or having a Home Alone school concert moment – see below.

But the holiday spirit was in full support and T did great.

The theme of the concert was “Children of the World” and they displayed student artwork around the gym.

I love T’s whimsical art of him sticking his tongue out to taste the snowfall.

I loved that they displayed flags of different countries, including those currently at war, as it provided a reminder that there are more that unite us than divide us.

T’s sneaky teachers selected emotionally manipulative songs aimed at maximizing the tears; I say this jokingly and with deep appreciation.

T’s class did two performances.

It was during the second performance, when the group sang “I Believe” by Nikki Yanofsky, that I unexpectedly became a bawling mess.

“Sometimes when I feel I’ve had enough

And I feel like giving up

You willed me to be all I can be

Now nothing can stop me

I believe in the power that comes

From a world brought together as one

I believe together we’ll fly

I believe in the power of you and I.”

– “I Believe” by Nikki Yanofsky

The lyrics spoke to me in compelling ways.

I thought about our highs and the lows – and there were truly hard lows – and I couldn’t help but tear up.

The hubby had asked me to film the performance, so I didn’t have a free hand to wipe my tears. I could’ve punched him. 😂

But the embarrassment was worth it!

On days when parenting a child with FASD feels so hard, a reminder that “I believe in the power of you and I” is a true blessing. 💕

A week ago, when I downloaded the song at home so we could practice, I told T what a moving song it was.

And he said, I kid you not, “Just wait till you experience it in person.” 😆

He wasn’t kidding! 💕

Here’s an audio recording of the performance for your enjoyment!

Wishing you and your loved ones all the best during the holiday season and to remember to always believe in the power of togetherness.

In the Dog House

In my next life, I want to be a therapy dog.

I took part of Friday off to take T to a PA Day paw therapy program hosted by the amazing Surrey Place team as part of their ongoing services for children with FASD and caregivers.

T and I loved the horse therapy program they organized for the PA Day in October and he was so excited for this latest outing; he got ready in record time that morning.

There were four therapy dogs, brought in by their volunteer owners from Sunshine Therapy Dogs.

There were seven families, including us, most of whom we met in the prior outing.

I enjoyed sitting down and watching the kids, caregivers and adult staff play with the dogs.

T was apprehensive at first. He loves dogs – and often complains it’s not fair he doesn’t have a younger brother or dog and that all he has are two cats 🤣 – but he also gets anxious around them.

He asked to borrow my coat, wanting to use it as an armour of protection, and he rolled up his hands and his head inside them.

Getting chummy with Rosie.

By the end of the hour, he was on the ground and having a blast with the dogs, of whom Rosie the boxer he was particularly smitten with.

Research shows that dogs can bring a sense of calm and comfort for kids with special needs – and I certainly saw that magic happen with my own eyes.

I am so thankful for services such as Surrey Place. They make a positive impact in furthering awareness, community and wellbeing.

I am also thankful for how the universe brings people into my life in ways that are not coincidental.

Three years ago, I had a random conversation with a single mother at T’s daycare park. I deduced her two adopted children likely had FASD. It was the first and only time we saw each other.

And yup, you guessed it, she was at the paw therapy program with her eldest child. It took me a few minutes to realize why she looked so familiar and she was surprised I remembered her. 😊

I am glad she is getting supports now too.

It was hard to say goodbye to the dogs. I wanted to take Moose the bulldog home – but thankfully I knew better. 😆

The Writing Parlour

Helping my third grader build writing skills is like making pizza; layer one ingredient on at a time.

The process sometimes feels like a struggle with a disability like FASD layered on top – but it nonetheless feels like I’m watching something special grow from infancy.

It brings back fond memories of the early days, when I obsessed over T being able to stack three blocks on top of another because that’s what toddlers were supposed to do developmentally; or counting the handful of words he could say; or reading his first words.

His short treasured history teaches us it’s about one step, one block, one sound, one word at a time.

Writing for T is a work in progress; he most certainly is not a fan of writing assignments.

If caregivers think doing homework with kids is tough, try layering on a disability that affects emotion regulation and impulse control.

I get called “dumb idiot,” “stupid fucker” or “fucking bitch” for initiating homework. And this is for spelling practice. I can’t wait for the nuclear meltdown when we work on essays one day. 🤣

Like pineapple on a pizza, I try not to take it personally, because it’s the FASD talking and once his verbal emotional diarrhea comes out and we co-regulate, he can do the work.

Consistency and routine are important for learning, even more so for children with FASD.

Occasional choice of words aside, T is a great storyteller and I’m often amused when I play with him or watch him play at how creative, articulate, funny and charming he is.

The trick is to help him translate all that good stuff and potential on the page.

Writing comes easier for me, as it’s long been an area of interest; it’s what I studied in my undergrad and I’ve done freelance work.

I am fascinated by the writing process and enjoy learning from others about their approach to writing, such as through Stephen King’s excellent memoir “On Writing” and William Strunk’s essential work “The Elements of Style.”

Learning practice is an important part of our weekend routine with T.

We block off 30 minutes each morning to read and do one activity focused on math or writing.

The key is to help him build mental models and learn how conventions like a title, introduction, transitions and conclusion all fit together.

T’s class was recently assigned a two-part procedural writing assignment: part one was to write detailed steps about how to make something and part two was to present it to the class.

T picked making pizza as his topic.

He and I first verbally listed the steps, which I wrote down. Then I had him write out the steps, including an introduction, transition words, and conclusion, helping him with spelling.

I think he did a very good job!

His penmanship needs works but it’s also come a long way. He’ll get there!

T then practiced hard over the weekend on his presentation.

We identified props he could use: dough, tray, pizza sauce (in a squeeze bottle), shredded cheese.

We discussed what his teacher expected: to talk clearly, not too fast or slow; regular eye contact; transition words; use props; detailed steps.

T loves to film “influencer videos,” so we filmed and watched practice videos to motivate him.

On the big day, the hubby and I got an excited text from his CYW that T did an excellent job.

“T explained how to make a pizza. He was very clear and he spoke to the audience. He even told them how long to bake a pizza for. As well as to cut up into triangle shapes and wait for it to cool then eat. Amazing.”

We were so proud and told T he did a great job.

As a reward, T got takeout for dinner – yes, not eating my cooking is a reward. 😆

His choice? Taco Bell. I guess he had enough of pizza.

The pizza he made after he practiced his presentation at home.

Why Stories Matter

Stories and personal testimony can inform, inspire and be a lifeline to someone.

December 1 marks the fourth anniversary of this blog and my first post, introducing T’s prognosis and our family.

I started my blog as a way to process my thoughts on the FASD parenting journey and to raise awareness and advocate for a little known and often misunderstood disability.

Thank you to everyone who provides community; you are a lifeline to this parent who tries his best every day for our little guy with great potential.

Writing on this blog reminds me about the importance of stories.

Stories help raise awareness and bridge our differences.

Last Friday, after weeks of planning between T’s teacher and the FASD Coordinator from the Surrey Place, the latter visited T’s class.

She spoke about physical and invisible disabilities, including FASD and ADHD – through reading a book, a writing and drawing activity, whole class discussions, and lastly, a game.

In an update to parents, T’s super supportive teacher shared that “the purpose is to educate the class about unique needs in the classroom, how we can be more inclusive and understanding, and what that could look like for those students in the class (e.g. extra time or support needed).”

T’s CYW said the class was very engaged and asked great questions – and T shared how he’s sometimes affected by sensory inputs.

The hubby and I sent a note to T’s principal, teacher, CYW and librarian (see below) to thank them for raising awareness, understanding and empathy – and that their school is a model that others should follow.

Stories help people see themselves and validate their lived experiences.

After I did my co-deputation to the school board in September, T’s CYW suggested bringing in a speaker for the class as well reading stories about FASD and invisible disabilities to the class.

With T’s principal’s support, the school librarian reached out to the hubby and I for suggestions of books to add to their library.

I reached out to CanFASD, FASD United and Surrey Place for suggestions and sent a wonderful consolidated list to the librarian, who ordered the three books pictured above:

The books arrived last week and the librarian – who was T’s awesome kindergarten teacher – let T have first dibs on them.

We read the books over the weekend and T asked if he also has ADHD and I said yes – and that’s why he takes medication and needs extra supports in the class, like the character in the book.

We liked all three books and ordered copies for T’s personal collection.

Stories provide encouragement.

This week, we said goodbye to the staff that ran T’s after school program.

She had only been with the school for two months but made an impact.

We are always forthcoming with T’s diagnosis and she shared that her son has ADHD and we had conversations about our shared challenges and strategies.

It was helpful to have someone who worked with T that understood him as a parent too.

So we were sad when she decided she wanted a different career path.

On her last day, she gave each student a gift bag – and for T, she included a lovely note from her and her son, a year older than T:

“From my son to yours,

‘I like cars because they are fast but what’s most important is they are all different.

You could say all cars are made the same but drive different down the freeway.

Every car has faults that’s no one to blame, like me and you. We are different but one of the same. Aren’t we just different by name?

So T, when some make fun of you for being different, just remember this. We say to you: they are not angry, because you are different; they are angry because you are authentically you.

You’re awesome, T!’”

Stories remind us of where we came from and shine a light on the path ahead.

After my close friend Jenny passed away recently, I spent time looking at old photos of our friends.

I then spent time reminiscing through photos of T, from when we first met and adopted him at age 1 through to present day at 8.

So many wonderful memories of playing at the park, birthdays, Halloween costumes, Christmas mornings, family roadtrips and vacations – and all the small stuff that seem so much bigger today.

I also revisited old blog posts and quickly saw the patterns of ups and downs – and everything in between.

It was a good reminder that life is cyclical – things do get hard on this FASD journey, but we got this, because we have each other… and there have been far more good than hard.

Most importantly, T’s story is larger than FASD; his life will be bigger than FASD.

Thank you for following along and I look forward with hope, heart and humour at the continued journey ahead with our T.

Photo at top: Camping at Bon Echo Provincial Park when T was 3.

One step and one day at a time. T, age 1, on our first summer cottage trip with my uncle’s family. He was just learning to walk up and down stairs!

Big Brother

This is the start of a beautiful friendship.

Last fall, T’s child and youth worker made the excellent suggestion to look into a Big Brother-style mentorship program for T.

I believe in mentorship and surrounding T with positive influences is important, because making friends is hard for kids with FASD.

Despite best efforts, we have yet to find a program that feels right and one that is FASD informed.

A few weeks ago, while celebrating the hubby’s birthday with my uncle’s family, my cousin J suggested that he and T hang out one on one.

When my family came to Canada when I was 8, I grew close to my cousin J and his sister; enjoying sleepovers, watching Power Rangers, collecting X-Men comics through our childhood.

My uncle’s family especially understands our FASD journey, because my cousin Tracy, J’s sister, has Down syndrome.

T adores his Uncle J. Our families hang out regularly and do a weekend trip during summers.

So this seemed like a natural fit and we agreed to give it a try.

Hiking on Beausoleil Island with Uncle J in summer 2018 when T was 3.

We were recently approved for government funding that we can use towards recreation (e.g. swim lessons), technology and books.

The funding also supports respite services and respite provided by family members is eligible.

The stars were aligned.

T’s first time trying to fish at age 2 with the hubby. His Uncle J took us on a boat out on Oastler Lake.

In special needs parenting, it’s important to try things out

The big visit took place at lunch today and T was excited, having counted down for two weeks.

J brought delicious chicken cutlet sandwiches for the hubby, him and I – while our selective eater made himself Eggo waffles.

Then T showed J where the cats hung out then they played Nintendo; I reminisced about the many hours J and I spent playing Nintendo as kids.

The hubby and I originally planned to duck out to do Christmas shopping, but I felt tired after recent events and spent quiet time upstairs by myself.

After an hour, we gathered to enjoy a delicious apple pie J’s partner had baked.

And just like that, 2.5 hours flew by and J headed off. But not before getting big hugs from T.

Who knows how long this will keep up. Instead of trying to plan every step ahead, like I often do, I’ll let this play out one step at a time.

Our families are seeing each other in three weeks and we invited J over during Christmas break to spend time again with T.

I emailed an update to T’s CYW. I know she will be pleased.

I had seen her earlier in the week at drop off and she told me T always complains that other kids have siblings while he only has cats. 🤣

I guess Big Brother will have to do, cuz the ship has sailed loooong ago on a sibling for T – along with what’s left of my youth.

Our first weekend trip with T and my uncle’s family to Oastler Lake. T curiously played with a fish that his Uncle J (leg pictured on the right) caught that morning. He was only 1 in this pic – how time flies.

No Day But Today

We said goodbye to a lifelong friend this weekend and I am reminded to never hesitate to live, love and laugh.

The universe works in wonderful ways, connecting people in seemingly coincidental ways.

In Grade 7 English class, I first became friends with Jenny because we randomly sat together in Mrs Piazza’s English class with one of her longtime friends since kindergarten and a friend I had recently met, having just moved to the area.

30 years later, the four of us found ourselves together in Jenny’s hospital room in palliative care saying our goodbyes in her final hours.

She spent the last two years bravely battling cancer. I did not write about it as I didn’t want her reading and being reminded about her pain.

When I think about recent challenges we’ve had with T at school – he’s been having wonderful days recently – I always pray for T to have the kind of friendships I have.

I’m so blessed with lasting friendships, especially this group of grade school friends.

Our group has grown from the initial four and I never take for granted how we’ve stayed in each other’s lives – through grade school, high school, first relationships and heartaches, going to different universities, entering adulthood, first jobs, marriage, children, roadtrips and camping, the death of parents and pets.

Growing up, my parents told me it’s important to have friends that are good influences – and I want that for T, especially as his disability will make him especially vulnerable during adolescence.

I’m so lucky our friends brought out the best in me and each other. We were the nerdy kids that cared about school, that pursued extra curricular activities like leading the school newspaper and yearbook, and we had mostly wholesome fun.

I spent most of Friday and Saturday with Jenny and a few friends – and those that could not be there called in or sent messages that we shared.

She was sleeping peacefully and the doctor let us know that hearing is the last thing to go during death and that she could still hear us.

We reassured her she was not alone and we reminisced. We were never the sentimental types – and she’d roll her eyes at that kind of talk – but we told her we loved her and that we’re happy she won’t be in pain.

We let her know that we will all see each other again one day and that we hope that she will have the home to herself she’s always wanted and the cats she never got to have.

At 6 last night, my friend and I noticed a change in her breathing and appearance, so we said our final goodbyes so her family could have privacy.

As we left the room, so her family could go in, I struggled to untie my hospital gown. I had tied the knot so tight.

I asked our friend to help and she struggled too. Jenny was gasping heavily and my friend and I burst out laughing through our tears.

I’m known as the clutz who inevitably does something avoidably stupid. I explained to her family this was one last “Stupid Ab.” moment for Jenny to enjoy.

When I got home last night, the hubby and T were out at the movies, and I opened a can of orange soda and bag of chips and looked at old photos I had not looked at in years.

Memories long forgotten but felt fresh as yesterday when I saw the photos: countless birthday parties, Halloween and horror movie nights, New Years Eve celebrations, Survivor finale viewing parties, holiday get togethers. Weddings and the arrival of kids. Little children now teenagers and their parents once preteens now in their 40s.

When I woke up this morning, I saw an email from her mother confirming she passed away shortly after 11 last night.

I’m still processing the news but if it’s anything the last year, a year of many losses, has taught me, is that life goes on all around us.

I just finished baking a strawberry vanilla cake for the hubby’s birthday and will take T swimming this afternoon – the waterslide at the community pool is back up.

Life goes on but you never forget the people in your lives and we reassured Jenny as we were leaving last night that we will never forget her – and that our kids will know her too.

Every birthday, she gave T a children’s book – and through her impeccable taste in literature, we discovered the wonderful British author Oliver Jeffers.

I told her T recently started to read the books out loud to me after years of them being read to him.

Jenny also had impeccable taste in music – loved UK acts – and in high school, she was obsessed with the broadway show, Rent – even organizing a get together for friends to catch the show in Grade 10 and gifting me the two CD album one Christmas.

Our friends were wondering what song to play while we hung out with her in her room as she slept and someone suggested Rent and I then suggested one of the best songs from the show, “No Day But Today.”

Listening to the song again, it really is an apt reminder that life is short and there is no day but today to live, love and laugh.

Photo at top: A birthday cake Jenny and another friend assembled for a joint birthday celebrated by our other friend and I in 2006.

Love and Karma

The energy we send into the universe is the energy we invite into our lives.

I found this belief challenged the past few weeks, because of T’s chaos – meltdowns, foul language, rude attitude, defiant behaviour at school.

It was draining – and at one point, I told the hubby I did not have the energy nor desire to keep doing this.

“When I was very young

Nothing really mattered to me

But making myself happy

I was the only one

Now that I am grown

Everything’s changed

I’ll never be the same

Because of you.”

– “Nothing Really Matters”

Hindsight is the best teacher, because reflecting while I write this post, I am reminded that I can and want to do this.

Parenting is about tipping the scale towards your child’s favour, as they draw upon your energy to grow.

Parenting a child with FASD can feel unrelentingly thankless, because you expend a lot of energy and get disproportionate chaos in return.

“Nothing really matters

Love is all we need

Everything I give you

All comes back to me.”

– “Nothing Really Matters”

The best parenting advice – and the hardest lesson I constantly re-learn – is to co-regulate with your child.

Responding to chaos with calm is the best way to deescalate a disregulated child.

I attribute the last few weeks to changes in his environment – higher expectations, less unstructured play, homework, new faces.

“Looking at my life

It’s very clear to me

I live so selfishly

I was the only one

I realize that nobody wins

Something is ending

And something begins.”

– “Nothing Really Matters”

T is an easy child to love but has moments when he is downright unlikeable.

When I have these feelings, I feel terrible guilt and sadness – and I try hard to remind myself to separate the child from the disability.

To forgive myself and to try again, because T is the best reason to keep trying, even if effort is not rewarded right away.

“Nothing takes the past away

Like the future

Nothing makes the darkness go

Like the light

You’re shelter from the storm

Give me comfort in your arms.”

– “Nothing Really Matters”

Recently, T’s CYW told us he needs to work on writing; one sentence journals won’t cut it in Grade 3.

So we started to work on writing during weekend learning and I asked his teacher for what she’s expecting – titles, transition words, details.

I’m not expecting overnight success, but I want to share his journal from this morning – I helped him organize his thoughts – about putting up the Christmas tree yesterday with the hubby.

I told him he did a great job and I am proudly sharing his work with his teacher and CYW.

Last week, his music teacher sent a nice email to let us know T got perfect (42/42) on his music test; she knew he practiced hard and was proud of him. I thanked her for the pick-me-up because he was having a rougher week at home and school.

Life with T reminds me, when I most need the reminder, that the energy we send into the universe is the energy we invite into our lives.

⁃ Madonna’s 1999 single “Nothing Really Matters” is one of my favourite songs. After never ever performing it on tour, she included it on her Celebration Tour, which kicked off in London last month, as the opening number! It’s worth the 25-year wait! Can’t wait to watch her show in January. It’ll be T’s first concert!

Smells Like Teen Spirit

A creature is growing in our home that is more horrifying than the supernatural or undead.

Saturday morning, I was enjoying coffee in the dining room when I heard the hubby say with alarm, “Oh my God, T, you’re turning.”

It was a full moon on Halloween weekend. Did we have a werewolf in our midst?

“What’s happening?” I asked curiously.

T screamed from his room, “My armpits stink! I’m turning into a teenager!”

I groaned. “Oh God, I need more coffee.”

T stomped downstairs with extra bounce in his steps. He walked towards me with arms raised.

“I don’t smell anything,” I said.

T then yelled, “PUT YOUR FACE CLOSER TO IT!!!”

I’ll do homework with him when he’s having a meltdown. I’ll clean shit from his underwear. But I ain’t willingly sticking my nose into his armpit.

This moment reminded me that life is flying by.

In a few months, T will be nine then it’ll be double digits and soon after, he’ll be a teen.

As a friend said on Facebook when I posted this amusing moment, it gets worse than armpits. “Just wait until the feet come in.”

Oh yes, I remember my teen years, wondering how shoes could smell like death.

Then I thought about the simple days when T was a toddler. I loved how he smelled after a bath and lathered in baby lotion.

I dread the teen years and how much harder they’ll be with FASD layered on top, if other parents’ horror stories are any indication.

But all we can do is to carve our own path. Do our best to prepare, seek support, and live day by day.

It reminds me to enjoy these childhood moments when T is begging us to play with him at the end of a long work day when all we want to do is rest.

To enjoy innocent traditions, such as writing letters to Santa or taking a coin from his piggy bank for the tooth fairy so T could deposit it back into the same pig.

We only get one childhood, so let’s enjoy it, because when we’re older, we’ll remember the good times and the hard ones won’t matter as much.

Halloween is T’s favourite time of the year after Christmas.

This weekend, T and the hubby carved four pumpkins; T did the designs and the hubby carved.

They also worked together to set up our front yard display – pictured at top.

While I made dinner tonight, the hubby assembled the treat bags we are giving out on Halloween, with a stash going to T’s school for his classmates.

After T finished supper, he asked to have a shower.

We praised him for having a super week this past school week and for being so awesome all weekend.

He really did – our hearts are full.

Then we let him go shower. Gotta wash those armpits after all!

To Teachers with Love

The influence of a great teacher is longlasting.

Thanks to Mrs Smith in Grade 3, who introduced us to daily journal writing, I developed an early start to expressing myself through words.

Tough but fair and kind teachers, like Mrs Ezer in high school, were whom I learned the most from.

I keep it touch with a few treasured teachers, one of whom is a friend – her son was the ring bearer at my wedding. I know she will read this. Don’t let this get to your head! 😆

I loved school and grew up with great respect for teachers. Both my parents were teachers; Ma was my school principal in the Philippines.

One of the best lessons I am learning as an adult is that learning is lifelong if you keep an open mind.

The school journey will be harder for T.

Due to FASD, an invisible disability that impacts up to 5% of people, T struggles with focusing in the classroom, needs supports to complete tasks, and making friends is harder because of challenges with regulation and impulse control.

T has recurring hard days in Grade 3 with staying focused, disruptive class clown behaviour, and getting in peers’ faces.

Some days, I want to scream, “What’s wrong with you!”

But I know the answer: it’s his disability and I need to adjust expectations and approach.

It’s easier said than done. I fall into self destruct mode more often than I’d like.

Thankfully, this year we have the continued support of his excellent CYW from last year, who helps him achieve good to great days.

This reminds me to think big picture.

His teacher is fantastic and we had a recent good in-person meeting to discuss T’s Individualized Education Plan (IEP).

I sense that she will push him, while also seek to understand, empathize and accommodate.

I like that she assigns homework. It is hit or miss with T. Some nights, he zips through it; some are meltdowns.

Regardless, I believe homework builds discipline and for T, it helps reinforce learning that he may have zoned out of in class.

I’m continuing to do light weekend learning with T; we read one book and practice math both days before he gets fun time, like swimming.

Advocacy and allyship are important and can be magic.

Last month, I did a deputation to our school board about increasing awareness and supports for FASD.

After I let T’s principal and CYW know about the deputation, the school did the following:

  • Consulted with us to add three books to the library about FASD and related subjects – Big thanks to CanFASD and FASD United for answering my email for suggestions.
  • Worked with us to arrange for a speaker from Surrey Place to speak to T’s class about FASD. His teacher is now arranging a visit from the FASD coordinator in early November.

As a parent that struggles daily with how hard this disability can be, I could not ask for more from a school – as I recognize that T is not the only child they have to support.

I sent a follow up e-mail to two school trustees who seemed receptive to our deputation to let them know what T’s school is doing – and said it is an example that more schools should follow.

Celebrate and amplify the successes

When I have a bad day with T, the ones that emotionally cripple me – and we had a recent streak of them – I remind myself T has many strengths; one of which is he’s a bright kid.

When we can get him to focus, he can pick up the concepts and get the work done.

Yes, I realize that not focusing is no small barrier.

So when he does well, we celebrate – like getting an A on his recent math test. Way to go, T!

I’m working with him on weekends on one of his Grade 3 goals: to learn the times table. He completed this table by himself over two weekends.

He didn’t do the 11s & 12s correctly so I let him copy a pre-populated table. He’ll get it over time!

Earlier today, for a job well done with his weekend learning, T and I went for bubble tea after our Sunday afternoon swim.

T had his favourite strawberry slush with popping bubbles and I had my usual grass jelly milk tea. I ask for half the sugar with our orders.

When I was younger, I wanted to be a teacher and I often pretend played as a teacher.

I was accepted into a teaching program for university but studied journalism instead.

Who knew all these years later, I’d become a pseudo homeschool teacher for T.

On most days, I enjoy it because the rewards of seeing T make his gains are heartfilling. On some days, I want to scream and tear my hair out, because he can be so frustrating.

So to teachers that do this every day, you have my utmost respect. And to the teachers that seek to understand, empathize, accommodate and bring out the best in T, you have my gratitude.

Photo at top: A 5-year-old during the “fun” virtual schooling pandemic days in 2020. He’s grown a lot since, in more ways than one!

Enjoy the Silence

I’m going to tell you a secret: It’s ok to say no, to put your needs first, to self indulge.

It’s become a morbid joke that when I plan self care time, something bad happens.

Christmas 2019: T got sick for a week.

Christmas 2020: Ma had a nearly life-ending stroke on the first day of my staycation.

Fall 2021: Ma got her autoimmune disorder and her body started attacking her muscles.

Christmas 2022: My sister passed away.

Summer 2023: I got pneumonia.

As I neared my three-day staycaytion last week, I dreaded asking what next: Zombies? Alien invasion? Asteroid?

Well, you’re not going to believe this – the hubby’s grandmother passed away!

The hubby kindly took T with him to the funeral in the East Coast and let me stay home for four days.

“Words like violence

Break the silence

Come crashing in

Into my little world.”

– “Enjoy the Silence” by Depeche Mode

It’s ok to say no

Part of me felt guilty for not going, but I had carved this time to give myself a needed break.

When I returned home after dropping them off at the airport, the silence and stillness forced me to confront my thoughts and feelings.

I have exhaustion and shades of PTSD from all that has happened the last few years.

I stayed in bed and on the couch all Friday.

I recently read a caregiver’s post that parenting a child with FASD is exhausting, because we have to be hyper vigilant at all times.

This is true of T from the second he’s up.

My body crashed on Friday, because it was allowed to finally lower its defenses for four blissful days.

I slept for like 20 hours, on and off, and woke up refreshed Saturday morning.

“All I ever wanted

All I ever needed

Is here in my arms”

– “Enjoy the Silence” by Depeche Mode

It’s ok to put your needs first

As any parent, and especially of a child with FASD, what I often crave is for someone to put me out of my misery silence.

Yes, silence.

Kids with FASD often exhibit hyperactivity, impulsivity, disregulation – and this can feel and sound loudly chaotic.

My latest struggles with T are the name-calling, the talking back, the screaming fits, and hair-pulling disregulated moments.

During these moments, my responses are often not the best – and it stems from accumulated fatigue.

When my reserves are depleted, my patience, empathy, even temperament go out the window.

Then the guilt of not having responded better eats at me. You can drown out external noise but the internal dialogue is inescapable!

People often forget the caregiver too needs to be taken care of.

So these rare four days to myself – my first genuine alone time since becoming a parent – was a gift.

“Words are very unnecessary

They can only do harm.”

– “Enjoy the Silence” by Depeche Mode

It’s ok to self indulge

Waking up to quiet stillness and having this carry throughout the day was strange but welcomed.

I filled the silence with music, TV or movies – and zero human conversation, despite kind offers from friends to hang out.

I watched complete movies, like Steven Spielberg’s The Fabelmans, without interruption or T loudly playing in the background.

I went to the gym to get my endorphin rush.

I soothed with cooking therapy, making myself buttery garlic steak on Friday.

I treated myself for meals I’ve been craving but didn’t have the time to go out and enjoy, like this delicious bowl of pho with bone marrow.

And my first Jollibee meal in a long time.

Jollibee is the only franchise to outsell McDonald’s in the local market. McDonald’s in the Philippines sells fried chicken and spaghetti to compete.

On Saturday, I followed live social media updates of Madonna’s opening night of her long-awaited Celebration Tour in London.

She opened with a fan favourite song she had never performed on tour: Nothing Really Matters. I’ve now watched this clip a thousand times.

On Sunday, my last day to myself, I slept in till Noon. It was a strange feeling, because even when the hubby lets me sleep in, I can’t fully enjoy it, because T is a buzzing boisterous noise in the background.

With 7 hours left before I had to pick up the hubby and T from the airport, I cooked a meal I’ve been wanting to make for a while, Jamaican ox tail, with Madonna playing in the background.

In keeping with the theme of slowing down, I used a recipe that required low simmering for 5 hours.

I’m pleased with the fall-off-the-bone results and it was nice to use spices and seasonings I often don’t cook with, such as rosemary, thyme and browning sauce.

We’re having this for supper during the work week ahead.

For the last supper, I grabbed takeout from a joint I’ve been wanting to check out: a hole-in-the-wall, down the street, once written about by a New York food critic in Gourmet magazine.

Check out this delicious spread of rice, one pound of crispy pork, veggies and soup. All for only $6!

I am very thankful for this gift that the hubby gave me. I love my child, my family, but sometimes, if I’m gonna be in this FASD parenting journey for the long haul, I need to give that love to myself too.

With my head feeling the clearest it has in a long while, my tummy full, my body relaxed, I headed off to the airport.

Horsing Around

The best things in life are not free.

Thanksgiving a year ago vs today, the dinner table is cozier and I am reminded how life flies by.

Friday was a PA Day and I took T to a fun and free activity organized by Surrey Place, the amazing organization that has supported our family since he was 18 months, when FASD was just a prognosis; formally diagnosed in 2022.

The event was a chance for caregivers and kids with FASD, 8 to 15, to hang out in person, after caregivers spent the past year getting to know each other through a virtual group.

The two-hour get together consisted of three parts: grooming horses, a picnic then a hike.

During breakfast at home, I mused out loud, “We’re putting six kids that have challenges with hyperactivity, attention, impulsivity and regulation in a room with horses. What could possibly go wrong?”

T quickly piped up, “I’ll get kicked in the butt.” 😆

But the activity went well. T was anxious at first, but the patient staff got him to brush and groom the horse.

I often read about equine therapy as an effective wellbeing tactic for kids with additional needs and I could see how it was indeed a calming activity.

And T didn’t get kicked in the face! If you set the bar low, you exceed your expectations! 😂

Afterwards, the kids enjoyed a picnic, thoughtfully prepared by Surrey Place staff, then played with each other in the open field, all bursting with kinetic energy.

It was T’s first time knowingly interacting with other kids with FASD and I felt peace and camaraderie as I watched similarly tempered kids enjoying being themselves.

We ended the outing with a short hike and I enjoyed talking to the other caregivers. I felt like we got each other and it felt so refreshing.

T is already super excited about the next meetup in December; a visit with therapy dogs. 🐶

Life as a parent of a child with FASD is challenging and on most days, it beats the crap out of me.

I reflected a lot the past week about the saying “the best things in life are free.”

They really aren’t.

Even love and life itself come with a cost.

When we open up our hearts to love, we also open ourselves up to heartache and grief. But we risk it all to receive love in return.

When we choose to live life fully, we open ourselves up to disappointment and failure. But we risk it all for joy, adventure, laughter and connection.

This is what being T’s parent is all about. We face the hardships head on, because of the sweet rewards that come with the challenges.

As I’m reminded this Thanksgiving, the best things in life, such as family, friends, health, community and the outdoors, are immeasurably priceless.

Cooking for the Soul: A Second Helping

In Chinese culture, we eat noodles during birthdays as it symbolizes long life.

When I watch T have instant noodles or spaghetti, two of the handful of things our selective eater will have, I joke it’s my life force he’s slurping away.

I often write about the importance of self care in the marathon journey of special needs parenting – be it diet, exercise, proper sleep, alone time, hobbies, connecting with loved ones, counseling.

Cooking is an activity I enjoy during alone time, picked up during the pandemic.

It’s fun, low pressure and if the meal doesn’t go to plan, it comes out later the same way as a Michelin star meal.

Thinking about my next cooking therapy adventure provides mental respite in my busy day.

There are so many recipe inspirations, whether they’re bite-size videos on Instagram or wonderfully-detailed blogs.

I also inherited cookware – such as a claypot and a steamer – from Ma after her recent departure, as well as nice plate and bowls from my late sister.

Browsing supermarket aisles for inspiration is also fun, such as my recent outing at Asian grocer T&T and daydreaming in the long ramen aisle.

Look at all that ramen options! We recently tried the Tonkotsu ramen with black garlic oil. Yum!

I also started to learn about plating techniques. According to top chefs, I can charge my family more for supper if it’s nicely plated. 😆

T gets annoyed when I’m in my cooking headspace, because it takes away from our Everest time. “Stop taking pictures of food,” he’d scream.

Maybe one day he’ll join the fun. But I’m honestly ok if it’s just time to myself.

Here are a few recent cooking therapy adventures:

Lamb and arugala salad. My original plating had three pieces of arugala and two dried cranberries but the hubby said it looked pretentious so I added more arugala. 😂

Lamb curry with garlic naan. The naan was store bought and I brushed it with butter. I hope to bake fresh garlic naan one day.

Spicy tan tan ramen was so satisfying to make. Who knew sugar free oat milk was key to that creamy savory spicy broth?! I’m also happy I’ve learned to make “ramen eggs.”

I made this French onion Salisbury steak with a pouch of onion soup mix long sitting in the pantry. A pleasant surprise! It also inspired me to learn about plating, because this looked messy.

Steamed egg and shrimp was so easy to make, using my mom’s steamer, and went well with rice!

Another steamer recipe – ginger scallion chicken.

Chicken congee is my go-to comfort meal. I garnished it with fried shallots, commonly used in Vietnamese cuisine, and chili oil.

Hot and sour soup. It was fun to demystify the process of how to make egg ribbons.

I made this Mexican-inspired dish with a pouch of taco seasoning also long sitting in the pantry.

Caprese salad is one of my fave salads.

Spicy peanut noodles.

Spicy peanut noodles topped with crushed nuts.

Lemongrass chicken dressed with green onion oil.

Curry cauliflower dressed with curry yogurt.

Spicy green beans. I used a lot of dried red chili and Sichuan peppercorn.

Cypriot potatoes garnished with dill and dipped in a lemon honey yogurt sauce. I learned that cinammon can be used for savory dishes!

Other Cooking Therapy Adventures

Uplift through Testimony

There is power and purpose in sharing stories. One voice can join a chorus to make a difference.

This week, I joined a director from the Surrey Place to make a deputation to our school board, the largest school board in Canada and one of the largest in North America.

Our goal was to raise awareness about FASD and to advocate for more awareness, supports and training for students and staff – including commemorating FASD Day every September and recognizing FASD as an exceptionality.

We had been planning to do this since Spring and our last two tries were postponed as the relevant committee meetings were cancelled.

It worked out for the best as the meeting we deputed at was the one attended by all school trustees, which are citizen-elected positions.

This was my second time making a deputation; the first was in January 2020 after T’s specialized program was cancelled due to budget cuts.

As a special needs parent, it is essential to be your child’s advocate.

It is exhausting and can be demoralizing as you often wonder if your voice is making a difference.

I believe it does. And when joined together with a community chorus, the message can be amplified.

I walked into the delegation room and immediately felt nervous.

We arrived early to scope out the space. The hand emoji is pointing to where I sat and spoke.

It was a different room from my last deputation; larger, double the member seats and two large screens displaying members joining virtually, meaning I was being broadcast online.

I do public speaking for work, but the stakes were personal, so I felt antsy. I had a busy day at work so I didn’t get to practice.

I reminded myself I only had to speak for 2.5 minutes and I thought about T, the hubby, his CYW and school, and it calmed me down.

The meeting started and we were up first; the Surrey Place director and I had 5 minutes total.

She went over by a minute and made good points. I lost 40% of my time and improvised on the spot by skipping over chunks of my speech, while keeping an eye on the countdown on the big screen. I finished with three seconds to spare!

The reaction from the trustees reinforced why it’s important to advocate for FASD.

I thought we’d be met with crickets but we generated good discussion.

One trustee asked if we think it should be up to the Ministry at the provincial level and not the Board at the city level to determine if FASD is an exceptionality.

This is the frustrating ping-pong game politicians play to pass the responsibility.

So I said the trustees and board can advocate to the Ministry. What I wished I said, in hindsight, was the board can demonstrate leadership by setting a good example for other boards to follow.

Another trustee asked what is the impact of having a student with FASD in the classroom on other kids.

I responded by reminding him the board has an inclusive approach to education and that with the right supports, students with FASD can succeed.

Another trustee asked what is it that we hope to achieve with awareness.

I responded by saying that with awareness, we can build understanding and empathy. I shared that it wasn’t until 7 years ago that I knew what FASD was and I am often reminded just how little awareness there is of this invisible disability.

With awareness, training and supports, teachers can provide the right approach for students with FASD to help them thrive.

The pleasant surprise came when one trustee shared that in February 2020, a month after my first deputation, a motion was made to recognize September as FASD Awareness Month.

She was the co-author of the motion and I politely let her know that as a parent, I have not seen any action from the board to recognize this month and she agreed they need to do better.

As we walked out after our deputation, another trustee approached us and let us know that a message is sent to board staff during FASD month.

I let her know the message needs to trickle down to school staff, parents and students – and that schools need to visibly recognize this day – for this motion to have meaningful impact.

And so, the advocacy continues.

The amazing FASD coordinator at Surrey Place had gathered 30 statements from parents, students with FASD, service providers and medical experts and provided a package of printed statements to each trustee at the meeting.

We will follow up with the two trustees whom we agreed came across as allies to continue the advocacy conversation.

I’m not naive enough to think a 5-minute deputation will change the world.

But every contribution counts towards a larger whole.

If we just helped a few light bulbs go off in that room then I consider it a job well done.

And I think we did.

Transcript of My Deputation

Here’s a link to an edited transcript of my delegation. I edited identifying details out for privacy reasons.

The Power of Yet

T asked the lifeguard if he could try the deep end test. It was his first-ever attempt. Would he make it?

I thought about this recent outing at the community pool, as it’s goal-setting time for the school year.

This year, I love how T’s teacher included the kids in the process, using the Power of Yet model.

Growth mindset is an important message for kids to learn and I appreciate how schools have shifted towards this approach in recent years.

When viewed through the eyes of an individual with FASD, and their caregivers, it is a powerful reminder that just because you can’t do something yet, it doesn’t mean it’s not achievable one day.

T gets easily frustrated when he stumbles – and in turn, it is frustrating for us as his parents – so a shift in mindset can be beneficial.

I’m aware that not everything is achievable with a positive mindset, but everything is worth a try.

T’s CYW shared proudly in her daily log that T set his own YET goals for the year.

Y (You)

  • Making friends
  • Keep hands to self
  • Sharing activities
  • Taking turns

E (Education)

  • Learn times table
  • Writing neatly
  • Spelling hard words

T (Technology)

  • How to log in on the laptop
  • Researching
  • Zoom with grandparents

After reading them, I too felt proud.

The hubby and I are also setting goals for T, through the annual Individualized Education Plan process.

The IEP is a tool the school creates to provide accommodations and supports in the learning experience to maximize T’s success.

Parents can provide input towards the IEP by completing a questionnaire and a consultation meeting with the teacher, who drafts the IEP.

It is a legal document that schools are accountable to follow.

This is our 4th IEP and it’s interesting to review the previous year’s document to see what still applies; many of them do, including highlighting his challenges around hyperactivity, focusing on and completing tasks independently and regulation.

We also make sure to highlight his many strengths, including: his bright, funny and caring nature; his aptitude for sports; and his desire to do well. We emphasized that while T may have challenging moments, experiencing his successes together can be immensely rewarding.

School is often stressful for kids with FASD and we see this in T. The days are long, there are many demands on him – and at the end of the day, he’s often had enough and is often moody and more prone to meltdowns.

We get it. It’s a work in progress. Annoying and hard as hell to experience, but we get it.

We try to provide opportunities to destress through things he enjoys – park time, biking, swimming and swim lessons on weekends.

I continue the weekend learning with him but keep it fairly light. We read one picture book together and practice math drills.

We need to work on his reading stamina and interest but his growth is undeniable. And it’s wonderful to see him start to learn the times table through practicing with flash cards I made using dollar store index cards.

Question on the front, answer on the back.

The Power of Yet is a good reminder that every day or every moment doesn’t have to be a home run or gold medal worthy.

The try is often the most important part of the learning journey – and to break it into smaller steps.

And during this recent weekend’s deep end test, T tried valiantly. His strokes and breathing technique were sloppy, he paused longer than he should’ve at the end of the first of two laps, and he didn’t finish his second lap – but he was close.

So he didn’t pass.

But I saw how determined he was and praised him for a solid first try at a difficult test.

I told him with utmost sincerity and belief that with constant practice, he will be in the deep end by next summer.

Fried Spam with Rice

Like many immigrant kids, I’ve experienced many “smelly weird” school lunches packed by Pa.

But I loved them all and the one I looked forward to most was fried spam on a warm bed of rice.

I would inhale the luncheon meat, its greasy goodness soaked up by the rice.

This weekend is Pa’s death anniversary and I marvel at how quickly 15 years flew by.

Pa was calm, patient, even tempered – qualities I often lack during the eye of the storm of parenting a child with FASD! 😆

My memories of Pa are about the small things that feel bigger today: waking up first in the house to prepare our lunches, prioritizing our academics, role modelling healthy eating and living.

If it wasn’t for Pa who insisted our family immigrate to Canada so my sister and I could have a better life than in the Philippines, I would never have been T’s parent.

All these years later, I still recall weekend walks in our Philippines neighbourhood with Pa. I don’t remember specific sights – but I remember the warm feeling of walking side by side with Pa.

Life moves in full circles and with symmetry, guided by a force bigger than us.

During our bike ride this morning, T wanted to venture out to the main roads – which we’ve never done before as we’ve always kept to the safety of our neighbourhood streets.

Thinking about Pa, I took a leap of faith and said, let’s go beyond our boundaries – and gave T clear directions to stay on sidewalks and to stop at every corner, stop sign and light.

T wanted to bike to our local supermarket, which we usually drive to, and we were out for over an hour and biked over 10 km.

T did an amazing job and followed instructions.

I would like to think that years from now, he will remember the feeling of these bike rides too.

When we got home, I made the hubby and I fried spam and rice for lunch, while T had KD.

I sprinkled nori on top and enjoyed the meal with chili garlic sauce on the side.

We then went to the first session of T’s fall swim lessons. Now in level 4, he has improved so much since starting lessons last Fall.

We then visited Pa, bringing him new flowers, as we do every death anniversary.

When we got home, the hubby and T baked gingerbread cookies, using baking mix T picked up during our Friday night grocery run.

We started the gingerbread army with these three.

Tree of Life

There is a special tree, that sways to the side like a painting, that serves as a route marker of time.

Killbear is special because it is the first place we camped together at as a family.

It is the first family vacation we took during the pandemic and we were so excited to get back out into the world.

This moment of T and I looking out into Georgian Bay encapsulates so many emotions about life.

It’s family tradition to take a photo of T with the iconic Killbear tree – a white pine that is over a century old – one we’ll continue as he gets older.

Here he was in 2016 at 18 months…

… in 2017 at 2 years…

… in 2020 at age 5…

… and our recent camping weekend at age 8.

I often think how fun it would be to have a photo one day of an adult T with his own little one – a full circle moment.

But if you look closely, there is now a beam supporting the tree.

A sign on the beam reads: “This tree has been the symbol of Killbear for decades. Sadly it is in decline and needs support. Please do not climb.”

When I first saw this, during our early Saturday morning hike, my excitement turned into sadness.

The tree’s state reminded me about life – and to enjoy every moment, even the declining period.

I thought about how wonderful it would be if everybody rallied around our most vulnerable – in T’s case, individuals with FASD – with the same fervor of support as they did this tree.

Life would bloom with more possibilities.

Who knows how much longer this tree will be around – maybe it won’t be here at our next visit.

But there’s no point worrying. We only have the here and now.

And even if it’s a stump one day, we’ll still visit and treasure this spot for all that it represents to our family.

Community Rocks

As the sun descended over Georgian Bay, crowds started gathering on the rocks by the water.

It was our second night of camping at beautiful Killbear and we were enjoying an after dinner walk to soak in our final evening.

Sitting by the rocks to watch the sunset is a tradition and I love how calming it is.

It made me think about communal experiences that bring people together, like parties, school, church, concerts, parades, fireworks, and so on.

There is something beautiful about people co-existing in a shared experience, everyone drawing their own meaning from the moment.

Today is FASD Day and it is celebrated annually on September 9 to raise awareness about Fetal Alcohol Spectrum Disorder, an invisible disability that impacts 3 per cent of the population.

The hubby, T and I have been on the FASD journey for over 7 years – each day bringing new successes, challenges and lessons.

One key reason we’ve been able to find success in the daily chaos is community.

These include direct supports such as our family and friends, school staff, community and specialized services such as the amazing Surrey Place and Community Living.

Indirect supports include online support groups and advocates whose work I admire from afar.

And of course, the amazing WordPress community who enrich my “free therapy” blogging with your kind and supportive comments.

A fellow Canadian blogger sent me a kind email this week to show his support for the parenting journey.

He drew parallels to his experience working with individuals with FASD:

“On their best behaviours they were two fabulous human beings, but they could change in seconds into two handfuls of stubborn button- pushing assholes that I could not control.”

Not everyone with FASD is like this, of course, but I had quite the chuckle, because he described T at his hardest moments.

Communities can form around anything – like this gorgeous daily sunset.

I am appreciative of the advocates who’ve built communities around FASD that has enriched my family and parenting.

In turn, the hubby and I have spent the last seven years doing our best to build and advocate for community around T.

We are protective of this community.

I recognize that more work to advocate, raise awareness, reduce stigma needs to be done – and I hope to do my part to grow the FASD community.

Communities thrive when there are moments to come together to rest, reflect and rejuvenate.

Bare feet on smooth rocks, cool comfortable breeze, sitting silently next to each other, calming swishing water.

T spent most of his time playing with boys as they gathered around a puddle, trying to catch a frog.

Then a big fluffy dog caught his eye and he asked the owners if he could pet the dog – and well, they got along beautifully.

After the sun dipped below the tree line on the horizon, the crowds dispersed.

Then we headed back to our campsite to start a fire.

Shooting Stars

Night hikes are a camping tradition and when darkness fell, we excitedly set off for the rocks.

After our spontaneous sunset swim and jumping off beautiful rocks at Killbear, we roasted marshmallows and made s’mores at our campsite.

T was now sugared up on s’mores and a watermelon slush from dinner.

He was bouncing off the walls with excitement for the hike – climbing trees and jumping off a boulder and picnic bench on our site.

It was past his bedtime and he was overtired and getting mouthy when we asked him to calm down.

But we knew these hikes happened once a year, so we changed to long sleeves, put on bug spray, armed ourselves with flashlights and set off back up the rocks.

We passed by the dark beach and it was calming to hear the water and see silhouettes of people enjoying the evening.

It was more challenging to hike up the rocky inclined path in the dark, navigating the jagged or slippery rocks and tree branches and roots.

But the view at the top was well worth the trek – beautiful Georgian Bay lit up by a full moon.

With no light pollution that we often have in the city, the stars were in clear mesmerizing view.

We lied down on the rocks and looked up at the sky.

T watched the stars for five minutes cradled in the hubby’s arms then decided he had enough.

He got up and started running around, fiddling with his flashlight, getting light in the hubby’s face – annoying him as he missed the two shooting stars that I saw.

Sitting in the dark, I let my mind tune T out and I focused on the gift of this moment.

It’s been an interesting journey parenting T and there truly have been some hard lows – moments when my mind went to truly dark places.

But the blessing of this night reminded me that we can let darkness consume us or we can focus on the bright stars.

I made two wishes with the two shooting stars I saw. And no, it was not to take T’s FASD away. It’s a part of him and I’ve made peace with that.

I wished for T to grow up happy, healthy, independent and self sufficient, successful, and to be surrounded with light, love and friendship.

I believe this wish is within reach.

T can be a real pest and he drives us batshit crazy often – but he is good at his core.

On our hike up and down the dark rocky inclined path, T had no problem zipping ahead of me. I am a slow hiker as I love to savour the moment.

Every few moments, T circled back to me to shine his flashlight on my path. “Here you go, so you don’t trip.”

Often times, I think it’s the hubby and I that’s shining a light on this kid’s path in life – but really, he also illuminates our lives with his bright light.