My Life With T

Finding the Bright Spots

Perfection is the enemy of progress.

I thought about this expression by French philosopher Voltaire after T broke his four-week streak of perfect spelling tests.

T’s teacher recently introduced Words of the Week; six words given on Mondays that he practices for a test on Fridays.

T crushed the first four weeks and we posted his tests proudly on our fridge.

Last Friday, he broke his streak and came home with a 5 out of 6.

The husband gave me a faux sad look and I told T he still did great and we posted the test up proudly with the others on the fridge.

The moment made me think of this video.

Writer Dan Heath muses that we often obsess on things that don’t go well and he encourages us to obsess instead about things that are going well and to scale up these bright spots.

I’m gonna keep it real. The following Saturday morning, I walked by the fridge and looked at that damn word “Us” that T misspelled.

It irked me because spelling was one of the bright spots in T’s up and down school journey.

Thanks to his teacher’s creative ways to encourage kids – such as creating a keychain of words to practice in a fun way – T is motivated to do well.

He even used it as a bedtime delay tactic last week when he got out of bed and said he needed to practice his words.

As his parent, I want him to have many chances to feel good about school and himself.

Then I realized how silly I was being. T was doing well in spelling and the hubby and I are gonna build on his progress and try to spread his enjoyment and motivation into other areas of school, such as reading.

And I walked away from the fridge.

Don’t get me wrong: doing well on tests is important. But I want T to focus on doing his best, learning and growing, rather than perfection.

The latter is focused on a fixed state in time; the former is focused on continual change and progress, also known as growth mindset.

As life with T reminds us, every day is a new chance to try again.

This Monday, T’s teacher announced that Words of the Week would be a review of the 30 words from the last five weeks; she would pick six random words for the test.

The gauntlet was thrown. Our family’s honour was on the line. Cue Rocky training music.

Jokes aside, we kept it chill with our no pressure approach of practicing two nights a week, including before the test.

Then we put it out of our minds and relaxed.

This past week, we also made adjustments to his medication – increasing the afternoon dose of methylphenidate – and as anticipated, there were a few bumpy moments.

By Friday, we were ready for the weekend.

As the hubby and I unpacked his school bag last night, we saw his spelling test: 6/6!

We cheered loudly and told T we’d celebrate with his dinner of choice. He picked McDonalds.

There was another surprise in his bag: a beautiful painted art he made in class (pictured up top).

I held it up against the glow of the golden hour sun and the moment felt like a bright spot in our week.

Every bump along the way from Monday to a Friday vanished into the past.

We complemented T on his work and he smiled and shouted, “It’s a masterpiece!”

Bedtime Stories We Loved: Volume 3

Reading to T as he rests his head on my shoulder is a joyful way to unwind.

We’ve been reading at night with T since we adopted him at 14 months.

As noted by the American Library Association, young kids that are frequently read to are more likely to recognize letters, have word-sight recognition, and understand words in context.

More recently, it’s nice to see T becoming more active in asking questions, retelling bits of the story and occasionally asking to read along.

In the last year, we are focusing hard on building his reading and decoding skills.

We’re thankful his teacher gives daily reading homework. Combined with bedtime reading – where there is no expectation other than to listen – we will slowly grow his skills.

As a follow up to my posts in 2020 and 2021, I’d like to share a selection of bedtime stories we’ve enjoyed in the past year.

It’s Okay To Be Different by Todd Parr

Todd Parr’s books are filled with positive messages that celebrate diversity and his joyful art reminds me of Keith Haring’s work.

This book was one of the weekly books T borrowed from his school library. I love the message that affirms to kids – with images of kids of all ages, sizes and abilities, from different backgrounds and family compositions – that it’s okay to be different!

The last time we read this, T asked to read. With the exception of a few words, he read it cover to cover on his own. The best part? One page stated: “It’s okay to be adopted.”

Creepy Carrots by Aaron Reynolds

As a horror enthusiast, I love that T is discovering a love of scary things.

This book is more funny than scary and is about Jasper Rabbit who loves devouring wild carrots, until they start stalking him. Is he losing his mind or is he being gaslit?

Beautiful illustrations bring this comical story – and its twist ending – to life!

Clifford’s Good Deeds by Norman Bridwell

I discovered Clifford books when my family immigrated to Canada when I was eight and it’s been fun introducing them to T.

T owns a collection of the first six Clifford books. He loves the idea of having a big red dog. The story about Clifford doing good deeds that go awry was particularly amusing to him.

Bon Voyage Mister Rodriguez by Christiane Duchesne

As T gets older, he is naturally asking bigger questions about life, such as death.

Books provide kids with safe spaces to explore hard topics. This story of Mister Rodriguez, who is only visible to children and sickly animals, is a surrealistic story that leaves things open ended for kids to interpret what happens after life.

Here We Are by Oliver Jeffers

T and I discovered the charming work of Irish writer and illustrator Oliver Jeffers through one of my dearest friends, who gifts T a new Jeffers book on every birthday.

Gifted to T for his 6th birthday, this story is narrated by a dad to his newborn about what they need to know about life.

As a parent, it made me realize just how much info there is to unpack for a little child. For T, he loved the quirky illustrations and the fun facts about space, deep ocean animals, and different cultures.

Happy Birthday, Big Bad Wolf by Frank Asch

Reading inspirations come from all places. This little book came with a McDonald’s Happy Meal, so it’s literally a tiny sized book.

It tells the story of the Little Pig who wants to throw a surprise party for the Big Bad Wolf, despite his parents’ hesitation. It provides a lesson about giving people a fair chance to prove themselves to others.

The Day the Crayons Quit by Drew Daywalt

The best children’s books are the ones that can be enjoyed by both kids and adults.

This wonderfully-illustrated book is about a boy named Duncan who receives letters from the crayons in his crayon box, either lavishing appreciation or complaints about his use of them. Duncan’s response is truly inspired.

Nibi’s Water Song by Sunshine Tenasco

The newest addition to T’s collection was gifted to him by his recently-departed CYW.

Books are great tools to educate kids about important social issues in relatable and non preachy ways. This story highlights the plight of Indigenous communities in Canada that do not have access to clean drinking water.

T loves to play at the sink – at home and school – for prolonged times, because he enjoys the sensory input of water. I try to balance indulging his play while guiding him to not be wasteful.

Into the Unknown

Step by step, the unknown becomes known…

Our adoption was finalized five years ago between Valentine’s and Family Day and is now always celebrated between these days.

On this Family Day, we went for a morning hike at Hilton Falls Conservation Area.

It was a beautiful sunny day and 1 degree compared to yesterday’s -12.

During our one-hour drive, we played “Into the Unknown” by Panic at the Disco from Frozen 2, one of T’s favourite songs.

When we first adopted T, he was on the cusp of learning to walk. We are thankful we got to experience that milestone with him.

Once he found his footing, he was always on the go and rarely sat still.

We were thrilled to introduce our love of nature to T, going camping before he was 2.

T is in his element in the outdoors.

It was nice to explore a new park and to experience our first winter hike.

I loved walking with tall poplar trees on either side, the warm sun reflecting off the snow.

We stopped to enjoy the whimsical…

… and admire the beauty all around us.

As we hiked in silence, I thought about the road travelled together.

Little did we know back then what an adventure this was going to be – the joys, heartache, laughter, uncertainty.

My mind continues to process the recommendations from his FASD diagnosis report and the next unknown that lies ahead.

But I promised myself I was going to enjoy our family time and save that work for another day.

Because like a hike in the woods, you somehow always find your way.

Sometimes by intuition and determination.

Sometimes by following the footprints and markers that others have left behind.

Sometimes by following others on the same path as you.

Sometimes by venturing off the beaten path and charting your own way.

But if you take the leap of faith and dare to venture into the unknown, you will always find something worth your while.

Day by day, step by step, breath by breath, the unknown becomes known. The uncertain becomes certain. The afraid becomes unafraid.

Helping Kids Navigate Difficult Change

Change is hard for kids. It was heart wrenching to see T process an unexpected change this week.

Change is harder for kids such as T.

If you hang out with the hubby and I, you’ll notice we give T ample warnings – 10, 5, 1 minutes before we move to the next activity, especially if T is currently doing a preferred activity.

It may seem excessive but sudden transitions often don’t go well with T, so we are proactive at using transitions to mitigate tantrums.

A few years ago, we learned about social stories and how these visual tools can help kids who struggle with social change.

In T’s case, his Montessori support created a social story to prepare him to move to a new classroom and teacher.

We read it several times the week before the change. He loved it so much it became a bedtime story staple for months after!

More recently, the pandemic brought a doozy of changes – lockdowns, virtual schooling, mask wearing, distancing – at an unrelenting pace. For adults, much less a child, it was overwhelming.

Big Unexpected Change

After recently receiving T’s FASD diagnosis, as much as we expected it, I didn’t want any more big life changes for a while.

Two weeks ago, T’s wonderful Child and Youth Worker, who has worked with T the last year and a half, let us know she got a new job and would leave very soon.

We were very happy for her moving to a dream role, but it still sucked because this was a huge loss for T. She was so good at her job and T and our family loved working with her.

My mind shifted into change management and how to set up the best transition for T.

Even though I knew it was a long shot, I asked if she could start her new role after Spring Break in four weeks. The break may give T a mental space between her and the new CYW.

Nice try but no cigar.

I asked if there could be a transition where both her and the new CYW worked together with T.

Thankfully, with the principal’s support, a new CYW was brought on to allow a full week transition with both CYWs this week.

The hubby, CYW and I discussed how we would break the news to T. We‘d tell T this past weekend and then she‘d tell him on Monday.

We kept the message simple: she’s leaving because she got a new job; T didn’t do anything wrong; she loves him; we will keep in touch.

We gave staff at T’s after school daycare a heads up, so they can be aware of and keep an eye out for potential behaviour symptoms.

While we were still sad with this change, it felt good to have a change plan in place.

When Best Laid Plans Don’t Go As Planned

The hubby and I broke the news to T on Sunday night after a fun afternoon of sledding.

He seemed to take the news ok and was glad to hear he would still see her this week.

Then the bomb dropped on Tuesday afternoon. His CYW let us know that it was her last day instead of the end of the week. It was a decision that was out of her and the principal’s hands.

Poor T was caught off guard like a deer in the headlights. He repeatedly told her, “But you said you had two more days.”

He cried during the bus ride from school to daycare. The empathetic staff let us know that he ran out into the hallway and around the school and was not himself.

Tuesday night was challenging. He was moody and emotional. During bedtime, he repeatedly talked about how sad he felt.

As a parent, I think it is important to let kids have the space and time to feel the fullness of their emotions.

But it still breaks my heart to see him sad. Processing big emotions with so little life experience as context is hard.

As I learned with change theory, there are four stages of acceptance – denial, anger, acceptance and commitment.

I see T experiencing the denial and anger stages right now.

Always Look Forward

The hubby and I are focused on guiding T forward, even though we feel the loss too.

The first day without his former CYW was expectedly up and down. His new CYW let us know he told her many times he felt sad.

On the bright side, we are thankful the new CYW is continuing to use the effective strategies that are already in place.

It also sounds like she has the savy and skills to recognize T’s boundary testing behaviour and to respond appropriately.

So despite the sudden and rocky change, there are many positives to focus on as we all help T move through this significant change.

Thankfully, we have a long weekend ahead and we are focused on relaxation.

Fingers crossed, we plan to have a curbside meetup with his CYW so T can have a calmer proper goodbye and both of them can have better closure, as I empathize this sudden change was difficult for her too.

Spring Break is around the corner and the three of us are using that as motivation to get through these next few weeks.

After all, if there is one constant thing in life, it’s change.

Cool As A Cucumber

Making cucumber kimchi and sledding down icy hills helped us keep it chill this weekend.

Six weeks into the new year and I’ve been working hard at my resolution: to be the calm in T’s storm.

It’s a life lesson I wish I could’ve applied earlier in my parenting journey – especially now that T’s recent FASD diagnosis confirmed emotional regulation is an area of impairment.

You can’t change the past and can only focus on the blank slate of the now.

I recently saw this image posted on a FASD parenting group and it resonated with me.

When I respond with anything but calm during T’s fight or flight moments, it’s throwing gas into a forest fire. It never turns out well.

The hubby and I have many recent conversations about how much better our mornings and evenings are when we don’t react during T’s moments with anything but calm.

Sure, I’ve bitten half my tongue off, but seeing a positive change in T has been gratifying. It’s paying off in dividends.

Even his CYW says he’s using better strategies and making better choices in school.

There are bumps throughout each day, don’t get me wrong, but I’m focusing on the big picture.

Oi Kimchi

Speaking of keeping it cool as a cucumber, I made Oi (cucumber) Kimchi this weekend, one of my favourite side dishes commonly served at Korean restaurants.

I found this @MyHealthyDish recipe and was excited at how easy it was to make. I also had all the ingredients at home.

I chopped six baby cucumbers into thin slices.

Then tossed it into a bowl and mixed it with 1 tablespoon of salt. I let it sit for 5 minutes to let water seep out of the cucumber.

After draining the water, I tossed in 1 sliced onion, 6 stalks of sliced green onions (green part), and 6 cloves of minced garlic.

Then I added in 2 tablespoons of gochugaru (ground dried red chili flakes), 1 tablespoon of sugar, 1/4 cup of rice wine vinegar, 1/4 cup of sesame oil and a splash of toasted sesame seeds.

For the best results, I let it sit overnight in the fridge and voila.

I prepared it on Friday night, the most soul-soothing way to unwind after a work week.

I served it on Saturday for dinner with jasmine rice, kimchi and grilled steak.

Sunday Sledding

On Sunday, after breakfast, with zero fuss, T sat with me and zipped through his learning activities.

He did such a great job with his three beginning consonant sound assignments.

These are the parenting wins I hang onto and that motivate me to keep going.

By the way, does this image circled in red below look like a plate? I had no idea what the hell it was and T looked at me bemusedly and blurted out quickly, “It’s a plate!”

Rings of Saturn was my guess!

After brunch with family, we went for an afternoon of sledding at the park.

With wind chill, it was a blistering -15 degrees. Who needs Botox when you have Canadian winters?

The giant hill was covered in ice and boy did it make sledding quite the rush.

As T and the hubby zipped down the hill and past me standing up at the bottom, my hands buried deep in my warm jacket pocket, I smiled and cheered them on loudly.

14 Days In Peru, Argentina and Brazil

A surreal encounter with Christ the Redeemer reminds me to always keep the faith.

In Fall 2015, the hubby and I ventured to a part of the world we had never been to.

We didn’t know it at the time, but our first visit to South America would be our last hurrah before parenthood.

Revisiting these photos, while processing T’s recent diagnosis, reminded me of a faith-affirming moment in Brazil.

Lima

After an 11-hour flight, we arrived at Lima, the capital of Peru and one of the largest cities in South America.

We had one full day of sightseeing and enjoyed the beautiful architecture and colourful buildings.

Vibrant flowers sprawled everywhere.

We saw olive trees for the first time. Look at those gnarly trunks and twisty dance-like branches.

The unexpected highlight was the Central Park in Miraflores. There were wild cats everywhere!

This girl picking up a cat for herself still makes me chuckle.

Cuzco

Cuzco is a city located in the Peruvian Andes and the former capital of the Inca Empire.

The majestic mountains and jaw dropping view still blow me away.

A friend and I were obsessed with the Llama, Llama children’s books at the time and imagine my surprise at seeing one in person!

Walking through the village in the mountains and through narrow stone pathways felt like stepping back in time.

Visiting a salt mine was a fun experience. We bought small pouches of Peruvian salt that we still use sparingly these days.

I guess this was an ancient concert hall?

We loved the beautiful Spanish architecture – and not a skyscraper in sight!

Ollantaytambo

Ollantaytambo is a village in Peru’s Sacred Valley. We stayed for two days to acclimatize to the altitude before visiting Machu Picchu.

Ollantaytambo is known for the ruins of an ancient Inca fortress.

The hike through the hillside stone terraces was breathtaking.

These were guinea pigs in a local’s home. I will not share the photo of the hubby’s dinner!

Machu Picchu

Considered one of the new Seven Wonders of the World, words can’t describe how breathtaking Machu Picchu was in person.

This ancient 15th century Inca fortress is located almost 8,000 feet above sea level.

You could do a four-day hike to get there or do a daytrip and take a train from Ollantaytambo then ride a bus up a narrow terrifying mountain path.

Exploring the ancient ruins was an incredible experience and I marveled at the ingenuity and magnitude of their engineering.

Here’s one of the living quarters.

We stopped regularly to take in the views. Our heads were literally in the clouds.

Iguazu Falls

After a short flight, we spent the next two days exploring Iguazu Falls.

Iguazu Falls consists of 275 falls and this stretch of double layer waterfalls captures its vast stunning beauty.

The falls are situated on a border shared by Argentina, Brazil and Uruguay.

About 80% of the falls are in Argentina. We we spent a day exploring them by hiking and by boat at Iguazu Falls National Park.

This was one of the walkways that took you to the edge of one of the falls.

This was me channeling Eva Peron. That kid looking at me probably thought I was an idiot for looking at Brazil while lipsynching “Don’t Cry For Me Argentina.”

We explored the Falls on the Brazil side the following morning, which had spectacular views of the Argentinian falls.

There were many calmer stretches and this outdoor restaurant was one of them.

We didn’t eat there but we did enjoy a delicious lunch at one of the packed cafeterias.

Argentina is known for delicious steaks. We had ten minutes to eat because we were behind schedule and I inhaled every bite of this meal that I still dream about.

Rio De Janeiro

Our final stop was Rio De Janeiro in Brazil, a city I had dreamed of visiting.

Over four days, we took in many of the local sites, including Sugarloaf Mountain.

The views atop of the seaside city were awesome.

These beautiful stained glass are part of Rio De Janeiro Cathedral, which is dedicated to Saint Sebastian, Rio’s patron saint.

This is Copacabana Beach, the region that the New York nightclub in Barry Manilow’s song Copacabana was named after.

We toured the favelas, which were featured in a chase scene in the film Fast Five.

The guide regularly reminded us we were in a dangerous place. We did not dare doubt her.

We made it out safely and enjoyed a relaxing final afternoon on the beach.

Keeping the Faith

Less than six months after our trip, T came into our lives unexpectedly and life took us on a different journey over the last six years.

As I processed T’s recent FASD diagnosis, I looked back at old photos and stumbled across our South America trip.

I recalled a memory from Rio de Janeiro.

On a rainy afternoon, we visited Christ the Redeemer, situated atop Corcovado Mountain.

Riding the tram up, the fog grew thicker and the nearby tree branches looked dream like.

When we got to the visitor centre at the top, it was raining heavily and the mountain top was covered in thick fog.

Half of our group chose to stay inside, complaining they couldn’t see anything.

Indeed, looking out, I could not see the stairs that led up to the 100 feet tall statue.

The hubby and I ventured out, even though the guide warned us we may not see anything.

As we walked up the stairs, the rain slowed down and as I inched to the top, He emerged from the fog, hands opened wide, looking down at all who stayed committed.

It was one of the most surreal experiences of my life and reminded me to always keep the faith.

In the last six years, our international travel has slowed down – raising a child ain’t cheap! – although we hope to explore the world with T when he is older.

These days, we don’t need to travel 8,000 feet up a mountain to have our breath taken away.

Smaller things make my heart soar. Like T crushing his spelling test this week, earning an “Amazing!” from his teacher, and his proud smile when he sees it posted on the fridge.

Our amazing boy reminds me everyday to never fear the rainy days, to journey through uncertain fog, and to always have faith.

The Diagnosis

After 5.5 years, we’ve answered a longstanding question about our son’s life and then uncovered more questions.

When T was 18 months old, he received a prognosis of at-risk Fetal Alcohol Spectrum Disorder (FASD).

It’s been quite the journey since as the hubby, T and I experienced the highs and lows of life with a little understood invisible disability.

We continue to be blessed with amazing supports, including school and community services that have enhanced T’s life.

His developmental pediatrician had advised to wait until T was older to be formally diagnosed.

Last November, over five years after receiving T’s prognosis, our family began the process to have T formally assessed.

The Assessment Process

In early November, the hubby and I had a virtual in-take appointment with the organization that had supported our family since T’s prognosis.

Among those present were the psychologist who‘d complete T’s psych assessment and T’s developmental pediatrician who’d complete his medical assessment.

We had an open conversation about T’s strengths and areas of concern.

Three half day in-person appointments took place – full day if you include the drive! – over November and December and one virtual consult in January to complete T’s psych assessment.

The team asked us and T’s teacher to complete several lengthy questionnaires. T’s teacher was also interviewed.

It was important for the hubby and I to be honest during this process.

While it was hard to see the answers T’s teacher provided – including how she assessed T’s relationship with peers and how she was concerned T didn’t look happy at school – we appreciated her honesty.

Receiving the Diagnosis

In late January, the hubby and I reconvened with the assessment team to review their findings.

The team assessed 10 brain domains affected by FASD, which include cognition, memory, academic achievement and adaptive skills.

To meet the criteria of FASD, a minimum of three impairments must be identified.

The assessment identified T had significant impairments in executive functioning, attention and focus, and emotional regulation.

With these three impairments, and knowing T’s pre-natal alcohol exposure, the team concluded that T met the criteria for FASD.

Processing The News

The assessment team asked the hubby and I about what we thought and felt.

I got one word out and burst into tears. The rush of emotions was unexpected.

The hubby and I went into the meeting hoping for a diagnosis. To be frank, we would’ve been disappointed if there was no FASD diagnosis.

So on one hand, the diagnosis validated our home and school experiences from the last few years.

On the other hand, I felt deep sadness, because FASD is not an outlook anymore. This is reality – even though we’ve always known deep down.

My sadness was not about having a child with a disability. It was being reminded the journey ahead will be hard for our sweet boy.

A few weeks later, I am at peace with the diagnosis. The hubby and I agree this is ultimately a great and freeing thing for T.

Looking Ahead

The diagnosis does not change our unconditional love for T. It strengthens our desire to help him live his best life.

Having a diagnosis will open doors to continued supports in school and the community.

It provides a tool to advocate for T’s behalf and to educate others to understand his challenges from the context of a brain disability rather than behaviour.

The diagnosis will help us advocate for the appropriate interventions that address T’s challenges and help reduce the risk of potential secondary issues, such as mental health problems, disrupted school experience, drug and alcohol problems, and trouble with the law.

The hubby and I are still digesting the detailed assessment report.

The team provided many wonderful recommendations – for home and school life. We intend to action on as many of them as we can.

We shared a modified report with the school – with T’s lengthier personal history removed. We feel that being open demonstrates our genuine intention to work collaboratively with them to identify the best solutions for T.

It is very helpful that one of the recommendations from the report was that T will require significant supports in school.

I have so many questions in my head.

One key question is how and when do we share his diagnosis with T – in a way that empowers him rather than crushes him.

It feels overwhelming to think about it.

But as life with T reminds us on a daily basis, we can only take it a day at a time.

And so, the journey continues…

“At least he said, ‘Please’!”

Be clear about what you ask for.

The photo above was taken when T was 1 and attending an Early Years program, part of our routine to help develop his speech.

He’s come a long way since!

These days, I appreciate that T verbalizes his feelings, rather than internalizes things. He’ll often let you know exactly how he’s feeling.

This can also be a challenge. In the last year, he’s used words that are provoking.

Depending on how far his mood has unregulated, the hubby and I have been called “idiot,” “dummy,” and he’s even called me “a fucker” once. You can imagine my reaction!

In these situations, I remind myself to stay calm and that it’s a symptom of an inability to regulate his emotions.

It is easier said than done, especially when you are in public and you feel judged as a disregulated boy is screaming “Shut up.”

But we are lucky to have understanding people in T’s life at school and in our personal circle.

It’s one reason we are very open about T’s disability, because it puts context into his challenging moments.

We remind others the behaviours are symptoms of a kid with a brain disability that makes regulating his emotions harder than for an average kid.

At home, we’re working to help T find alternative ways to channel his frustrations, impatience and anger.

One of the best ways, a lightbulb moment for us, is to stay calm when he is at his worst.

Again, this is easier said than done. It seems counterintuitive to most adults, because they’d say we’re letting T get away with bad behaviour.

Recently, T started a new thing of telling us and daycare staff, “I am going to turn into a monster” when he is feeling frustrated, usually when he’s not getting his way.

I often stifle my laughter as I tell him that I think he’s already turned into one.

While most people will find his phrasing concerning, I consider it progress, because he is recognizing his emotions and finding healthier ways to process them.

The hubby and I also use books and short videos to help T learn strategies.

This weekend, I came across this excellent video “Just Breathe,” shared by the wonderful Our Sacred Breath.

It features kids talking about how they feel when they get angry and suggests “breathing” as a way to deescalate.

I’ve bookmarked this video, created by Wavecrest Films, to share with T one day soon.

The hubby and I try to be realistic. We know this will be a long journey.

We are thankful for how far T has come – feedback echoed by daycare staff – and that his positives outweigh the challenges.

At T’s positive moments, he is utterly caring, charming, funny, endearing and personable.

We celebrate every step and try to have a sense of humour at the missteps.

On a recent weekend, T was watching videos on the tablet. I gave him many transition reminders he will have to take a break to do reading work.

After my last reminder, he snapped back loudly, “Shut your mouth!”

I took a deep breath and replied calmly, “Use polite words.”

“Shut your mouth, please!” He shouted back right away.

Always one to look at a situation as half glass full, I thought to myself, “At least he said, ‘Please!’”

Writing Birthday Messages to the Future

Sometimes, you’re blessed with a day overflowing with love that you bottle it up for the future.

We had one of those days this week when our dearest T celebrated his 7th birthday.

T excitedly counted down the days till his birthday since it entered single digits.

If you want to teach a kid about subtraction, pose the questions as the number of days till their birthday or Christmas. It’s very effective!

T got up excitedly. When he saw the balloons, his face lit up with a smile and he ran to the hubby and I for a group hug.

We did a Mario and Luigi theme for the second year. Balloons were red and green and bunched in threes, like in a Mario Kart battle mode.

During drop off, the hubby said teachers, parents and classmates all wished T a happy birthday.

Mid morning, T’s Child and Youth Worker sent us a photo of a Paw Patrol birthday card that a classmate had given to T.

My heart melted when I read the message: “Happy birthday T, you are my best friend.”

While T was at school, I thought back to the first birthday we celebrated with him at age 2.

The hubby and I started a birthday tradition of writing a letter to T’s 16-year-old self that summarized the past year’s highlights – both the highs and lows.

After he turned 4, I started this blog.

I plan to give the letters and share this blog and his adoption book when he turns 16. We hope they will help him feel a complete sense of self and how far he will surely have journeyed in life.

Birthdays provide a great time for reflection.

If you’re lucky, you can tune out the noise, forget the minutia and focus on the big picture.

When I picked T up from his after school program, he carried a chocolate bunny the staff gifted him.

He asked if he could have some and I said he could have a small bite before dinner.

He and I have different ideas of what “small bite” means.

T asked for Pizza Hut for dinner.

T had to finish his reading and spelling practice before he could have his Dairy Queen ice cream cake and open his gifts.

I’m an asshole, I know, but it was the only way to motivate him to do his homework!

T received thoughtful gifts from his grandparents, CYW and our friends.

The hubby and I gave T a fort-making set, because it would help build his creativity skills while leveraging his love for fort making.

And what are the chances his grandparents and us got him the same birthday card!

When I look back at this period of T’s life one day, I will remember the challenges for sure, but moments that will stand out with crystal emotional clarity will be days like this birthday.

Days filled with love, joy, balloons and cake.

Making Popcorn

One freeing lesson I’ve learned is that every child’s potential pops at their own time.

You may have seen this meme – the photo of popcorn with a message that reads:

“Popcorn is prepared in the same pot, in the same heat, in the same oil, and here the kernels do not pop at the same time. Don’t compare your child to other children. Their turn to pop is coming.”

Comparison is a thief of joy. As a parent, it is hard not to make comparisons. As a special needs parent, that pressure is even stronger.

I remember when we received T’s prognosis in 2016, I felt anxiety over things that I chuckle at now; like Googling what percentile his height and weight were at compared to the average child.

One big thing I worried about was T’s delayed speech at age 2.

We practiced daily with this 100 First Words board book and I was thrilled when he first correctly pointed to all 9 words on the page – a sign his receptive language was improving.

Here we are, six years later, and he is speaking just fine, albeit using colourful language I’d rather he not use!

In hindsight, I wouldn’t change how hard we worked with T. What I would’ve done differently is to ease off the pressure.

As I often write, I believe the journey is more rewarding than the destination.

When one is so focused on the destination and on others on the road, one forgets to live in their own moment and to enjoy the view and the company they are with.

I thought about the early days of working with T on his speech when I recently reflected about his journey to learn to read.

He is behind his peers, but he is making good steady progress.

The hubby and I still work hard with him, including on weekends, but we try to focus on fun now and not put so much pressure on ourselves to have T move up a reading level.

T can sense our anxieties and that, in turn, surely adds pressure on him, which can only deter his enjoyment and enthusiasm for reading.

With less pressure, a focus on fun, and genuine and generous amount of praise, we’re seeing a gradual change in T.

This month, I noticed that when we read to T at bedtime, with no expectations of him to read, he will ask to try reading some sentences.

His face lights up when he reads it correctly. He is not as discouraged when I gently correct a word he’s misread.

I also started to incorporate some of the language building techniques I’ve seen his teacher use during virtual schooling.

I pick two to three words from the book we read and ask T to brainstorm other words with similar start or end sounds – such as dr, cl, pl, sh, str.

I was warmly surprised at how many words T came up with on his own or how he sounded out the word after I gave him a letter to match up with an end sound (e.g. b+orn = born).

I wrote out all the words T created to show him how awesome of a job he did.

We cheer T on after each reading practice, because on days when his ADHD is super challenging, just getting him to sit and finish the work is quite the feat!

When we celebrate his good work and focus less on the challenges, it’s a joy to see how great he feels and the difference in his mood.

So yes, T may have been “stuck” at his current reading level for the last two months, but I’m focusing on his gains and less on the pressure of him moving up one level per month. He will get where he needs to at his own time.

When the focus is on the moment and not on an artificial rat race with others, you open yourself up to fun moments.

When we were reading “Clay Play” below, T said quite crankily, “What the hell! Why is she making so many things with clay?” In other words, he wanted it to end, so he could have free time!

And he did finish the book and did a great job with the word sound brainstorm. So as I promised him, we went to play in the snow.

He found a giant mound of snow in a parking lot and enjoyed climbing up and sliding down.

When we went back home an hour later, T asked to watch a movie with popcorn.

The hubby reminded T that he could make his own popcorn.

I watched him place the bag in the microwave, enter the time and press start – something I never would’ve felt comfortable with a year ago.

As the kernels started to pop, I gave him a high five for his awesome morning and told him to enjoy his movie.

“You’re Frozen When Your Heart’s Not Open”

When faced with fear and worry of the unknown, the natural response is to numb and protect your heart from potential pain.

I remember the early days of reading up about FASD and randomly bursting into tears while watching a toddler T sit or play.

It felt overwhelming, stressful and lonely.

But the heart has muscles. Every emotional weight helps train it to get stronger over time.

“You only see what your eyes want to see.
How can life be what you want it to be?
You’re frozen, when your heart’s not open.”

Last week, T discovered Madonna’s song “Frozen,” thanks to the remix version that’s popular on Tik Tok.

I then introduced T to the original version from 1998 and I was delighted he liked it too.

I chuckle thinking back to my early 20s when I went to get henna tattoos on my hand to copy M’s hands in the music video.

The elderly henna artist told me it’s for women only, but I didn’t care and still did it.

Fast forward to 2022, I chuckle at T’s reactions to the lyrics, “If I could melt your heart…” He insisted that “if your heart melted, you’d die!”

Although T is technically correct, he will one day learn about metaphors and lyrical language.

“If I could melt your heart,
We’d never be apart.”

Special needs parenting is an emotional marathon without a defined finish line.

You experience the full spectrum of emotions: deep unconditional love, fulfilling joy and fun, rewarding successes and soaring highs.

And on the flip side, negative emotions such as fear, worry, insecurity, doubt, frustration…

A crushing grief that visits you like unscheduled waves of the ocean…

An avalanche of guilt of how you could be doing more or how you could’ve reacted differently.

In my young parenting journey, I’ve learned to leave myself open to all of it – the good and bad, the beautiful and ugly, the light and dark.

They are a mirror reflection of each other; one informs the other. Each half makes the other real and alive. Both halves make me a whole parent to T.

“Love is a bird, she needs to fly.
Let all the hurt inside of you die.”

So the million dollar question is: How do I, in turn, help T build emotional resiliency?

I’ve got a $5 bill and a lotto ticket in my wallet – so that’s how far I’m at with figuring this out.

One of the best advice I got from a colleague is to validate our children’s feelings.

We may not fully understand what they are feeling, but it is real to them.

The hubby and I do our best to give T the space to feel the fullness of his emotions – he’s a kid who gives the fullness of his emotions! – and to try to give him the tools and vocabulary to process his emotions in a productive way.

Mind you, we don’t always get it right. Often times, our frustrations get the best of us.

But we know the emotional journey ahead for T will be a bumpy one and that’s why it’s important to help him be best prepared for it.

“You waste your time with hate and regret.
You’re broken, when your heart’s not open.”

Last week provided the three of us with a wonderful reset.

After two unexpected snow days, T finally went back to school and daycare.

He had three great days and this was followed by an uneventful and relaxing weekend.

We remain hopeful we can continue this positive momentum. The most important part is T feels good and this will be the fuel to keep us going.

Yesterday afternoon, we asked T to sit down to finish his extra math assignment.

I prepared myself for the exercise – counting 10 more or less, 100 more or less – to be challenging, as T had a hard time earlier in the week and we had to stop as he got very frustrated.

But I didn’t want the fear of another meltdown scare us from trying again.

And so we tried using a different way to explain the math concept to T.

And he got it! He completed the activity and proudly brought it to show the hubby.

This moment reminded me why it’s important to always try, because when things click, it’s so great to see T feel good about himself.

The frustrations make the successes all the more real and rewarding.

Afterwards, we went to play in the snow.

It was our second time out that day and T enjoyed sledding and stomping in the deep snow.

It was late afternoon and we basked in the golden hour light.

It was freezing cold, -15 degrees Celsius, but watching T play, smile and laugh made me feel warm and happy.

Labels Don’t Define Us

I was recently reminded about how we are taught and conditioned to label things from an early age.

Watching T complete his recent graphing assignments for virtual learning made me think about how we teach kids early on about sorting things into categories and labels.

To be clear, sorting and labels have a purpose and help us make sense of the world. The school activity was also innocent – sorting by shapes, colours and by like objects.

Labels, in the context that my mind went on a tangent on, can be limiting and damaging.

For starters, I often think about the label of a diagnosis, such as FASD, and the stigma that can shape T’s life.

In the early days, the hubby and I never shared T’s prognosis for fear of negative reactions.

Now, we are open about it because we know it helps open up doors to accommodations, such as a school IEP, and support services, such as a dedicated CYW in the classroom.

But I am mindful that a label can conjure up negative stereotypes.

I read with frustration about a recent SNL skit that poked fun of individuals with FASD.

It made me angry, because SNL used their huge platform to further marginalize individuals with an invisible disability that is already little known and understood.

It reinforced to me that labels are not the problem. It is the awareness raising – or the lack of – that is the problem.

It reminded about how behaviours can often be quickly labeled as good or bad. But in the world of neurodiverse children, we need other considerations such as disregulated, overwhelmed, or needs accommodations.

It’s not so black and white – speaking of even more labels!

Last week, on an unrelated note, T asked the hubby to do a different hair style. He wanted his hair shaved on the sides and back and to grow the top out.

He recently watched the movie, Tangled, and was smitten with the female character Rapunzel.

My initial reaction in my head was no. But I stopped myself from reacting and supported his request.

It reminded me of two other moments in the past year: when T asked for pink crocs and the hubby suggested a different colour and when he asked for an Anna doll from Frozen for Christmas.

It’s very funny how those moments make us pause, whereas when T asked for a Nerf gun this Christmas, we went with the flow.

It reminds me how even the hubby and I, whom I consider open minded, are also conditioned to label things; in this case, traditional associations between masculine or feminine.

T did get his Anna doll – the crocs were not available – and it got equally rough-housed as with his other stuffies, trucks and toys. He is non discriminating that way!

It really is so silly to even have to pause at these moments. They remind me that I, too, have a lot of conscious unlearning to do.

Thinking back to T’s prognosis, at the end of the day, I want a clear diagnosis for him – whatever it may be – so we can help him move forward in a clearer path.

As T and life reminds us everyday, a prognosis or diagnosis does not define us.

Labels should not define us either in such rigid and black and white ways. Life is richer and livelier in pinks and technicolor.

With love, support and accommodations, T will undoubtedly define his own path in life.

Snow Day

Sometimes, life gifts you a sign to slow down.

Today was supposed to be T’s return to in-person learning. Our city got walloped with snow, so schools were closed but kids were asked to log in for online learning.

My initial reaction was “For fuck’s sake, let kids have a rare proper snow day!”

When I got up, I felt unwell. Without getting TMI, it was a “both ends” situation.

It did elicit a sympathetic “I’m sad that Papa is not feeling well” reaction from T.

So I went back to bed and slept till past Noon. I felt much better when I got up, after expelling the evil spirits earlier.

Even better, T’s teacher did not host live classes today; instead, he was given two math assignments to complete on his own.

I looked out the window and the world outside was coated in thick magical snow.

My inner child thought about letting T just enjoy his snow day. My inner perfectionist asked him to sit and complete his work.

Thankfully, T was cooperative and he did it fairly quickly, including taking a break between tasks.

Counting and making tally marks was a synch.

Sorting, counting and graphing was pretty straightforward. But there were a lot of questions, so I helped him with some of the mouse moving as he was getting restless.

The important part to me was him correctly answering the questions by himself.

Afterwards, T wanted to chill with his Switch so I left him alone for the afternoon.

In the late afternoon, when the snowfall finally stopped, we went out to enjoy the wonderland.

It was magical. Snow almost up to T’s waist.

It was carefree fun. T climbed up giant mounds of snow on driveways and threw himself on deep banks of snow.

It was about being a child on a snow day.

Thank you for the gift of this day – albeit the sickly start. Sometimes, we all need to slow down.

Resolutions

Through virtual schooling, T learned about setting goals for the New Year.

The related assignment is the last thing we had to catch up on and complete this weekend before we return to in-person learning this coming week.

I often write about how we struggle with T to sit still and concentrate long enough to finish the work in the assigned time.

There is always a distraction, avoidance, excuse or disruptive behaviour that makes what should be a straightforward task very drawn out.

So we play a lot of catch up.

The hubby and I often worry what will happen when T gets into older grades and doesn’t have a dedicated support – or how T will fall behind or through the cracks as he gets older.

There may come a time when we simply can’t keep up with catch up.

In this life with T, you can only take things a day at a time.

What we had to complete this weekend was get T to identify three goals for 2022 and write a short sentence about how he will achieve each goal.

Getting him to type out the answer onto Google slides added a layer of technical complexity.

So I got him to brainstorm his answers out loud and I wrote them on a small dry erase board (great find at the dollar store) and then got T to type out his sentences onto the slide.

After an hour of distracted behaviour, T had only typed three and a half words.

I grew very frustrated and in turn, T became emotional.

He wanted me to type the answers and I explained that he has to learn to do his own work.

Thankfully, the hubby stepped in and helped T finish the task… eventually.

T came up with three great goals and pragmatic ways he will achieve these goals:

1. Learn to play soccer – “Practice in the backyard with Daddy and Papa.”

2. Learn to swim – “I will take swimming lessons.”

3. Improve my reading – “I will practice at home.”

Goal Three is the most urgent goal for me but Goal Two is the one I’m looking most forward to in terms of level of enjoyment.

As for me, one of my goals for 2022 is to be more patient with T when I sit with him to help him do school work.

I will achieve this goal by not strangling him as my first response to his disruptive behaviour.

It’s all about keeping it real and achievable!

Little Community Helper

Kids can be self centered and I often think about how to teach my little T about good deeds.

Last fall, we ordered a collection of the first six Clifford books, because T was interested in the adventures of the big red dog.

One of the first stories was “Clifford’s Good Deeds.” The story made me chuckle because Clifford had great intentions to help his community but often made things worse – which reminded me of how T can be at times.

We chatted after – and very quickly, because I only ever get T’s attention for a short time, about what good deeds are and why they are important.

Like other kids with FASD, of which T is suspected to have, we experience the extremes of emotions.

When he is very disregulated, it’s screaming and hitting. But thankfully, we experience more of the positive extreme. At his best moments, he is very sweet and caring.

One of his previous teachers noted to us that he has a good core. Despite some of the challenging past weeks, we still believe in this.

The best way to teach young children is to model the desired behaviour.

I don’t always get this right, especially in my stressed out moments. But we’re all a work in progress!

Last week, during a stressful day of juggling virtual learning and work, Ma messaged to ask me to pick up groceries for her.

My initial reaction was of annoyance. I was juggling a lot, many of which were related to her endless appointments, and I wondered why she couldn’t ask someone else to help.

But I calmed down and agreed to help.

The following day, a Saturday, I was on solo parenting duties as the hubby is working weekends all this month.

I asked T to come with me to visit his “Ama” and “Ipo” (his grand aunt) to drop off the groceries.

I gave him the bag to hand to them when we got to the door and I explained beforehand that he was doing a good deed, because he was saving them time from going out in the cold.

After our visit, we played at a new playground in the area and grabbed a slushee after. With kids, it’s all about positive reinforcement!

Coincidentally, T’s class learned about community helpers for social studies this week.

They learned about the different places and people in the community that are helpful, such as schools and teachers, fire stations and firefighters, hospitals and doctors/nurses.

For the assignment, T had to sketch a first draft of his community of helpers. He included a school, playground, firestation and “hospetol.”

T also did a separate journal exercise. He decided to write about his cousin, A, and drew a sweet picture of the two of them playing.

He wrote: “I like to play with A. She is visiting our house in the summer time.”

That evening, he called her on FaceTime to show her his work. He told me that he will give it to her when she visits this summer.

Touchscreen Generation

Nothing ages you like teaching your Generation Alpha son how to use a computer mouse.

Our 6-year-old T was born into a world that already had Instagram, wifi, and iPhones.

I remember being once amused when he was three years old and trying to use the TV by touching the screen instead of using the remote.

He figured out how to use a tablet quicker than potty training. He makes his way around Mario Odyssey but does not show that same confidence with reading.

So imagine my amusement when T’s teacher suggested we pick up a school computer for him, while he’s virtual learning.

I am very thankful he got access to one because the pandemic has highlighted that not everyone has equitable access to technology.

The homework assignments are presented on Google Slides, so T needs to use both the mouse and keyboard to complete them.

While T is savvy with our touchscreen tablet, he is not experienced with a mouse. In a way, it’s like asking someone who streams their music to now use a Walkman.

Today, we worked together on a simple science assignment about Living vs Non-Living Things.

Conceptually, T was able to verbally answer the questions in a flash.

The frustration came when I tried to patiently teach him how to use the mouse to drag the Xs and check marks to answer the questions.

T is often impatient, easily distracted and easily frustrated, so I took a deep breath.

I first started with the hand-over-hand technique, thinking back to the days he learned how to stack blocks, use a spoon and use a zipper.

T got frustrated after I told him to try it on his own.

“Do it for me!” He screamed. Then got off his chair and stormed into his room when I refused.

I reminded him he was not going to get his reward – ice cream – until he finished. I told him I’d wait for when he was ready to continue.

While I tried to be calm, I was feeling frustrated. I could see myself moving from the Living to the Non-Living category by the end of this task.

I saw my obituary clearly in my mind: “40 year old man dead after his brain exploded from teaching son how to use ancient technology.”

But T eventually came and sat back down; he really wanted that ice cream.

He tried again and this time he got it! He successfully clicked on a check mark and dragged it to the correct answer.

I cheered loudly and T cheered loudly and the hubby, who was working across the table from us, cheered loudly. Then I gave T a big hug.

With T, you have to be over-the-top with positive reinforcement to build his confidence.

I looked at the assignment. 17 more questions to go. Fuck my life!

But T was quicker with using the mouse with each question and he soon completed the assignment and earned his ice cream!

Walking on Thin Ice

My six-year-old recently asked me what the word “pressure” means?

Since we watched Disney’s “Encanto,” he’s been humming his favourite moment, when Luisa sings the song “Surface Pressure.”

We had the song on repeat while driving. I told T that when you feel pressure, you feel very worried you might not do a good job.

I thought about how the character Luisa feels the weight of keeping it together for her family.

School has been challenging this fall, with recurring reports of disruptive and negative seeking behaviour and refusal to complete work.

We always anticipated school would be a difficult journey, as it is for kids with FASD; in T’s case, suspected FASD.

Late last November, his CYW told the hubby and I that T told her he thinks he’s stupid and bad.

That comment has weighed on both the hubby and my mind since.

T is a bright kid but the world is often challenging for neurodiverse kids with learning challenges.

When kids – everyone, really, special needs or not – feel they are not able to meet expectations, that will manifest in behaviour, such as anxiety, avoidance (of work) or “bad behaviour.”

We returned to virtual schooling this week due to record high COVID cases.

Speaking of pressure, three days in and the hubby and I feel stressed. You’d think this being our fourth go at this, it’d be easier.

Expectations are higher in Grade 1. The school day is two hours longer, each session is an hour versus 30 minutes last year and the work volume is higher.

Most people will smirk and say it’s Grade 1, how hard can it be? I invite these skeptics to virtual school a child with learning challenges, while balancing a full time job and other familial care.

I burst into tears on Thursday, because I was having a very hard day.

The wonderful thing about life is – and it’s a lesson I hope T will learn – is that every day is a new chance to try again.

Today’s beautiful sunshine and a restful sleep last night have given me an opportunity to reflect on the last three days.

… About what’s working well:

T is mostly sitting down for the sessions and he seems to understand the concepts. He’s participating a little bit in class.

… About what’s challenging:

Getting him to do the work in real time is a struggle and results in tantrums or meltdowns.

I wish he could see that he knows the concepts. On Thursday, after a three hour battle, he finally sat down at 7 pm and let me catch him up on a lesson and work he missed because he was screaming in his room. He zipped through it.

That sounds dandy and all, but I don’t have the time or energy to do this every day if virtual school is inevitably extended!

… About how we’re accommodating him:

The hubby and I didn’t have time to properly prepare because of how sudden the switch to virtual learning happened.

But we’re making modifications. We cleaned up his space and put away a lot of toys during the school day to minimize his distractions – because T is so easily distracted.

We started using a token chart again as an incentive to get him to participate in class.

We asked T’s teacher if it’s all right if we opt out of virtual gym class after lunch and use the time to take him out for fresh air, burn his energy, and reduce his screen time.

We are fortunate to have an organized teacher. She gets how challenging the situation is and has made it easy for parents to catch up after class.

She and T’s CYW are implementing a plan next week for T to have one-on-one sessions with his CYW, if he is having challenges in the larger class.

On Friday, instead of going to virtual gym, T and I went for a walk after lunch.

It was a wonderful break and our first outdoor time since virtual learning resumed.

The puddles in the park from a few days ago had turned into ice because it was super cold.

T enjoyed brushing away the thin snow on top and then sliding on the ice.

There was a nice long stretch of ice on the path home that T enjoyed before we returned to class.

The afternoon session was better. There was still an initial reluctance from T to sit down and he had a tantrum when I stopped a video that he was watching so we could go to the final class.

But he calmed down, listened during class and earned four check marks for participating four times during the hour and two check marks for completing the Baby Yoda drawing during the art class that closed off the week.

The Force was strong with our Padawan that hour. I anticipate the new week will undoubtedly bring out the dark side again, but I savoured that positive light moment.

Brittle and Faith

“There is a crack in everything. That’s how the light gets in.”

This is an excerpt from Leonard Cohen’s song “Anthem” that I saw posted on Instagram.

After a year of best laid plans falling apart, we began 2022 by making something just to break it: peanut brittle, using this easy recipe from In Diane’s Kitchen.

2021 felt like a year of constant planning – creating Plans A, B, C… X, Y, Z – and re-planning when things went sideways.

The year felt hard, because kids like T thrive on routine and repeated shakeups such as the ping pong between in person and virtual schooling shattered hard-earned progress.

The last few weeks of 2021 felt exceptionally hard. In addition to T’s challenges at school, Ma’s health took an unexpected turn for the worse: muscle disease.

Ma’s condition shows that we all can be strong but in the blink of an eye, one’s body and mobility can fall apart.

There were recurring moments this fall when I did not feel like myself.

Surprised by Joy blogger Wynne’s post about Groundlessness provided an apt word that captures my mood: I felt groundless, because the accumulated challenges felt crushing on the ground I seemed to walk on.

Cohen’s lyrics resonated, because the past few weeks reminded me that in weakness, one’s faith – religious or not – can be strengthened.

I am often an optimist and it serves me well. But as a special needs parents, I often feel the need to hold it all together.

The last few weeks showed that by stumbling through cracks, you learn to find new footing.

Making peanut brittle was a fun activity to do on a lazy New Year’s Day.

T gave us an unexpectedly rare morning off when he woke up at 11!

My eyes first opened at 9 and I had thought about checking to see that he was breathing but I was enjoying the silence too much!

The last two weeks have been great actually. Even though T was home this past week, I slept in and took lots of naps. It’s amazing what sleep can do for your mood!

When I saw Ma on New Years Eve, her medication seems to be improving her condition.

After a bumpy few weeks, I am starting 2022 on sweeter footing.

Kamayan and the Comfort of the Hand

Aristotle said that hands were the tool of tools and symbolize strength, protection and generosity.

My hands were formed inside and emerged from Ma’s womb 40 years ago.

These days, my hand is what my 81 year old Ma holds onto as I take her to endless appointments, due to her recently diagnosed muscle disease, as she’s fearful of walking outdoors and falling.

My childish hands once held onto my parents’ hands as I crossed the street. My adult hands now hold onto my T’s hands.

I enjoy these moments as I know the day will soon come when T will want to walk on his own.

As a baby, toddler and boy, hands help T make sense of his world; to explore, play, communicate.

At his affectionate best, I enjoy T’s warm hugs. Giving each other high fives are satisfying.

At his challenging moments, T’s hands could hit you, hurl a toy across the room or at you, or slam a door with great force.

In fact, T is banging on the dining table aggressively as I type this, because the hubby is not giving him ice cream because he’s demanding it quite rudely rather than asking respectfully.

As a special needs parent, you often get obsessed with developmental milestones.

In the early days, I was laser focused on whether T was able to stack three blocks, use a spoon properly, or master the pencil grip.

I’m learning to let things go, figuratively and literally, in a year when my hands were very full with so many issues that were weighing me down mentally, physically and emotionally.

I’m learning to look at T’s often muddy hands in a new light. Little boy hands are supposed to be dirty. It’s a sign T is having fun playing and exploring outside at school and daycare.

The photo at the top was from this Fall’s Terry Fox Run for cancer research. T has become quite smitten with the late Canadian hero’s story.

As noted on the sign pinned onto his shirt, he ran for “Daddy and Papa”! His hands got quite muddy, dirt under his nails, from the outdoor play that day. I smile at this photo every time I see it. T is living his best life.

In another pandemic year, washing hands was a way to keep ourselves safe.

Tonight, I’m so ready to wash my hands of 2021.

For our final dinner of the year, I treated the hubby and I to a Kamayan feast, a Filipino communal-dining experience with an assortment of grilled meats and vegetables served on a bed of garlic fried rice and plated on a banana leaf.

Kamayan means “eat with your hands” and it is believed that Filipinos do this to break social boundaries and to build bonds with each other.

I’m not exactly looking to bond with anyone over coronavirus, so we kept the meal to the hubby and I; T was grossed out by the shrimp head.

I dropped off a separate Kamayan set with Ma and my Aunt beforehand.

My Aunt, who lives with Ma, has done the lion’s share of taking care of Ma since her stroke last year and now the muscle disease, and this was the least I could do to extend a hand of thanks.

The meal was delicious. The grilled eggplant, okra, bangus (milkfish) and calamari in particular were delicious. There was enough garlic fried rice leftover that I will serve with canned corned beef for my first brunch of 2022 tomorrow.

As the final minutes of 2021 tick away, the hubby and I will soon put T to bed, so we can binge the just-released new season of Cobra Kai.

I look at my worn hands, which tell their own story of what 2021 was like. I made sure to cut my nails and moisturize them today. I like to enter a new year on a cleaned up note.

I want to close off by saying thanks to all of you who follow along on the hubby, T and my journey. To those who take the time to comment, thanks for the support you’ve provided during an especially trying year.

Give yourself a hand for making it to the end of the year. Happy new year and wishing you all the best in 2022!

Cousins

Magical moments in parenting happen when you watch your child connect and click with another.

As much as I’m still complaining about not having a quiet break to myself during my time off work, it was nice to have given T time with his grandparents, Aunt and cousin in the East Coast.

He was particularly excited to see his cousin A, whom he last saw this summer.

The minute his cousin arrived, T and A vanished to the basement for hours.

I enjoyed popping downstairs once in a while and eavesdropping quietly at the door, watching T show off how good he was at the Nintendo Switch, with A watching over him.

The two provide an interesting contrast. A is three years older and taller. She is sensitive to noises, sometimes wearing noise-cancelling headphones, while T is loud. She is calm, he is hyperactive. She is polite, T can come across as blunt and rude.

And yet, they get along and he is fond of her.

One thing that upsets me about the pandemic is that T is missing out on social interaction.

No birthday parties, sleepovers, playdates – because of distancing expectations and general uneasiness from parents, including ourselves, for kids to gather with other kids outside of school.

Children like T struggle with social interactions and emotional regulation, so I feel like T is missing out on valuable practice with kids during pivotal years in his development.

This is reflected in challenges T is having with classmates, especially during recent weeks, and it weighs on my mind a lot.

So when I see T blossom and connect with his cousin in a positive way, it warms my heart.

Mind you, it wasn’t all pleasant. On their second visit, T had a full blown meltdown after dinner – over ice cream of all things – and the hubby and I put him to bed early while he screamed at us.

It happened on Christmas, of all days!

The wonderful thing with T is that every day is a new day and for their third and final visit together, T and his cousin had fun time playing together for hours.

When it came time for them to leave, I could tell that T was processing his sadness. He kept pacing around and when it came time for them to leave, he gave A a big tight hug.

Earlier that evening, he asked if his Aunt and cousin could visit us – and he was delighted to learn that they planned on visiting next summer.

He also told the hubby and his Aunt that he wanted to marry A one day. For T, marrying someone is an innocent sign of love and affection – rather than anything creepy like those Lannister twins on Game of Thrones. But I did joke with the hubby and his sister that T and A technically aren’t related by blood because T is adopted.

After they left, T retreated to the basement and started crying, saying that he missed A. It was both heart wrenching and touching. All we could do was hug and console him and remind him that he’ll see her again in a few months.

In moments like this, I think about how nice it would be for T to have a sibling. He would be a great brother. It’s too bad the hubby and I realistically can’t take on another child, especially if they require so much from us like T does.

When we returned home earlier this week, T told the hubby that he was no longer going to sleep in our room with us at night.

The hubby asked him why.

T said he needed to practice sleeping in his room by himself again so that when A visited, she could sleep in his room with him.

Later that evening, as T laid in bed and the hubby and I were downstairs, T yelled out loud, “How many more days until summer?!”