Why Special Needs Parents Should Create a Will

For our 40th birthdays, the hubby and I gifted ourselves the creation of our wills.

It does feel morbid to think about life after death as we celebrate this wonderful milestone; the hubby last fall and me later this Spring.

But we are pragmatic and recent events have emphasized the need to plan for the future.

We worked with a lawyer with expertise in estate planning and the process was straightforward. We had scheduled this process before recent events and noted the ironic timing.

Creating a will and related documents, such as a Power of Attorney, gives special needs parents the peace of mind that there is a plan in place for your child’s care if anything were to happen to both parents.

This article provides an excellent summary of key points for special needs parents to think about.

For the hubby and I, it all comes down to ensuring there is a plan for T’s care should something happen to both of us.

As the hubby and I know that individuals with FASD, of which T has an at risk prognosis of, often struggle with managing their finances even as adults, we opted to set up a trust for T, to be managed by an executor, instead of giving everything to him all at once.

The last few weeks have been so chaotic with Ma’s unexpected situation and virtual schooling that I was tempted to cancel the lawyer appointment. But we went through with it and now we have peace of mind it’s done.

Cuz I gotta say, if this pandemic doesn’t kill me, virtual schooling will, if it keeps getting extended.

During a recent bedtime, T and I were chit chatting to pass the time before he fell asleep.

I asked T, “Will you take care of daddy and I when we get old?”

He replied without hesitation, “Yes, I will do everything for you.”

Well, that was reassuring. I almost asked him if he could put that in writing.

Sunday Blast Off To Space!

Pandemic lockdown has restricted travel, but T’s imagination rocketed us to outer space on a quiet Sunday.

All I wanted to do on this afternoon was nap – I feel so exhausted – but T’s endless energy needed an outlet and I always feel guilty about plopping him in front of the tablet all day.

So after starting a beef stew I was meal prepping in the Instant Pot, I decided we were going to outer space.

T and I first watched a real-life rocket launch, learned about the planets in the solar system, saw the surface of Mars, and learned about gravity.

Being a hands-on learner, T picked up his toys and hurled them across the living room.

“Look, gravity,” he said and I laughed nervously, grateful our living room will be renovated in the future, so I didn’t sweat the craters he created.

Then as I promised him, we created a rocket.

I took his tall IKEA toy storage unit and removed the drawers.

Then I put his foldable fire truck over it.

Then I asked T what we could use to enclose it and he suggested chairs and blankets.

Chairs and blankets it is!

Then T climbed in and explored his rocket. It was actually quite roomy inside!

I loved how he quickly got lost in his fantasy, pressing imaginary panels of control buttons on the side and making beeping noises.

Then we decided to pack for our adventure.

Ladybug and Dem Bones were going to join us in colonizing Mars.

Oh, and Buzz Lightyear too. Can’t forget him!

Then he made sure we had supplies and tools to build our home in Mars.

We were now ready for liftoff.

T plopped his Paw Patrol bucket upside down inside the rocket and it was now his pilot seat.

“Beep beep,” he said, pressing imaginary buttons.

We realized the fuel tank was empty and so he went outside the rocket to fuel up.

Countdown time and I asked T to count us down; it’s always nice when we can squeeze in math!

10-9-8-7-6-5-4-3-2-1… and off we went!

We arrived on Mars in record time and I quizzed T. “What colour does it look like here on Mars?”

“Red,” he replied.

Ok good, so he was listening earlier. Hard to tell sometimes when he’s squirming in his seat.

Then suddenly, he spotted our cat Kyrie’s cone from his recent trip the the vet.

Then we were now in a vet’s office instead of outer space. His stuffed Dalmatian was now sick because she ate too many vitamins which made her break out in spots.

Such is the life of living with a child with ADHD and the attention span of a squirrel.

Oh… and the beef stew turned out great! An Earthly comfort we can’t wait to dig into soon.

A Visit to the Vet

A sick cat gave our little kindergartener a hand-on lesson about what a vet does.

At 12:30 am on Monday, the hubby woke me up and said our cat Kyrie was sick. The hubby had been cleaning up stinky drops our cat had been dripping throughout the house.

With everything going on in our lives, the last thing we needed was a sick cat. The only thing missing was a crashing asteroid or locusts.

The next morning, I felt tense. Our work and homeschool week got off to a shaky start.

Right off the bat, T had a meltdown because we were putting his toys away, so he could be less distracted during school.

We managed to get him to sit for part of language class discussion on “When I Grow Up,” a fun coincidence since I just blogged about this topic.

This time, instead of saying he wanted to be a parent, T told me and I shared on his behalf with the class that he wanted to be a police officer so he can put bad guys in jail!

A few kids talked about wanting to be a vet, which T learned was a doctor that helped animals get better.

The rest of the day felt stressful because it was meltdown after meltdown with T refusing to sit for class.

As always, many tears later, I was able to sit down with him one on one to catch him up on the day’s lessons and to complete the work.

He then asked if he could join the hubby to take Kyrie to the vet.

We had a lightbulb moment to tie this into the morning’s lesson about grown up jobs.

So the hubby walked T step by step through the process of preparing the cat for the vet, including getting the crate out and giving him a calming medicine.

They left for the vet and it was so nice to have an hour and a half of peace and quiet to actually focus on my day job!

They came home with good news. The vet said it wasn’t serious. Kyrie likely chewed on something sharp that gave him an abscess in his mouth that got infected. He got put on antibiotics.

The best part was that the vet put this silly cone on him that makes him look like he’s auditioning for The Handmaid’s Tale.

I couldn’t stop laughing! I’ve always seen photos of animals with cones on but never in real life.

And the cone wouldn’t fit around T’s head. I checked and tried. Oh shucks.

The experience with the vet reminded me that for a child, learning is not just about sitting in front of a tablet or completing worksheets – although these tasks are still important to master.

There are additional ways to learn.

Getting T to participate in something he was interested in – helping care for Kyrie – gave him a good lesson into what being a vet and to care for a sick animal is all about.

After dinner that night, T wanted to pretend play Kyrie’s visit to the vet. He wanted me to be the vet and he wanted to be the cat.

Kyrie’s large crate was still in the foyer and T crawled right in! He didn’t quite fully fit in, but believe me, I had some pretty mischievous thoughts right then and there!

When I Grow Up…

T’s child & youth worker recently shared a super sweet story.

The hubby and I chatted with her two weekends ago to strategize for the return to virtual learning.

She has been such a godsend to T and we consider her to be an integral part of Team T.

At the end of the call, she told us that recently in class, they asked the kids what they want to be when they grow up.

T said he wants to be a parent.

It melted my heart and I started to tear up.

Two weeks into homeschool hell, the hubby and I have been finding it exhausting.

In some ways, it’s been easier. But the sheer volume of things we have to coordinate and look after on a daily basis is draining.

This weekend, the three of us took it easy and did a whole whack of nothing.

Friday evening, T found me lying down in bed.

“Can I come rest with you?” He asked.

I responded without even thinking, “No, cuz then it’s not called rest.”

But he came and lied down next to me anyway.

He took my phone and started looking at the photos, something he likes to do often.

“Do you remember this?” He asked, holding the screen to my face.

It was a photo from our summer roadtrip and stop at beautiful Killarney Provincial Park.

“Yes, I loved that day,” I said.

“Can we please go back?” He asked.

I smiled and replied, “Yes, we’re going back there this summer. I can’t wait to go swimming in the lake again.”

I love that we’ve created these memories with T and that he recalls them with fondness.

When I was in my early 20s and in university, I had many dreams for my future. Being a parent was not one of them.

As I near my 40s, I have to agree with T: being a parent, his parent, has been the best thing about growing up.

I certainly do not always feel this, especially during these recent challenging days.

But during the quiet moments that we are gifted each day, like lying down on a bed and looking at photos together, that feeling rings very true in my heart.

And yes T, I also can’t wait for summer to be here and to create new memories in nature again!

The Magic of a Child’s Imagination

One of the enjoyable things as a parent is to see a child’s growth.

I remember those proud milestones that felt like they would never come: first steps, first words, first time peeing in the potty.

Lately, I enjoy seeing T’s play skills and imagination grow.

Today, the hubby gave me a blue moon gift to sleep in. And I did… until 12:30! I felt like a new person when I emerged in the early afternoon.

T was in the middle of playing camping adventure and asked me to join him.

I walked into his room and found this setup.

He had set up a pretend campsite and turned his foldable firetruck, gifted from his Grammy and Grandad – into a tent.

We turned three storage buckets for his toys into logs for Daddy, Papa and T to sit around the campfire – aka an orange pylon.

I just loved it seeing his creativity in action!

Kids with T’s prognosis – at risk FASD – have many challenges. But one common strength they have is creativity and being good storytellers. I see these qualities emerging in T.

I found a spot in the circle and T went downstairs and brought up his stuffed toys and we seated them around the campfire.

I was eyeing his “Lamby” thinking a roasted lamb would be good right now, but I wanted to keep the pretend play at a PG rating.

Just needs a dash of rosemary and butter.

We roasted marshmallows and then it was time for bed.

“Goodnight to all of my wonderful children,” he told his stuffed toys. Then he and I climbed inside the tent.

T turned on his Galaxy Cove, which projects a starry pattern and light onto the ceiling and walls. Lying on the bed and looking up at the starry ceiling, it felt like we were really camping.

Oh, how I yearned to be truly out in the woods, without the specter of the pandemic.

We closed our eyes for a few seconds and T proclaimed that it was now morning.

He turned on the bedroom light and decided that we were going to go for a hike.

I asked him what we needed to pack and he said fishing rods. I guess we were going fishing!

We went for a long hike in the woods and stumbled upon a small creek… with a giant shark!

T tackled the shark and chopped him up and cooked him for dinner.

That was quite the unexpected meal to have at an Ontario Provincial Park!

I praised T for playing so well and for having such a wonderful imagination. Then I decided to get showered.

As I was getting ready in the bathroom, I heard T talking to his stuffed animals. I loved every single moment that I eavesdropped upon.

I almost felt like I was gazing at the Northern Lights.

The Necessity of Compartmentalization

The hubby and I re-entered homeschool hell this week.

It was as exhausting as we anticipated. But thanks to experience from last Spring and to T’s organized and supportive teacher and child and youth worker, it felt less painful this time.

As any parent, special needs or not, will say: taking time to recharge is important. You can’t pour from an empty cup.

The two weeks I had taken off end of December for vacation were anything but restful after an unexpected family emergency.

Thankfully, Ma is stable and on the long road to recovery at rehab.

Nonetheless, I entered this last week of simultaneous work, homeschooling, parenting, and keeping an eye on Ma with a deficit of rest and a surplus of stress.

Everyone has different ways to manage stress.

I believe in doing what works best for you – so long as you deal with it.

My strategy is to compartmentalize – to deal with each stressor one at a time, rather than trying to deal with everything all at once.

I visualize each challenge as a box. I take one box out at a time and deal with its content and then put it away before I take the next box out.

In contrast, multi-tasking is like trying to juggle several balls or to keep multiple plates spinning on sticks. At some point, you’re gonna drop balls or plates are gonna fall and break.

When I was in the emergency ward doing the overnight shift while Ma was sleeping, I reminded myself this is a marathon and not a sprint. I have to pace myself across 2021 and leave space and time for balance and rest.

I had a total of 1 day to myself during my two-week vacation.

On that day, I put Ma in a box in my head and stored it away. I had full trust that she was in excellent care.

I tuned out and did not respond to text, email and social media.

T was at daycare and the hubby was working. So I spent that glorious morning on the couch binging a fantastic Korean series called Sweet Home. I worked out, went for a walk and took a long nap.

Similarly, for this week’s return to homeschool hell, I took a compartmentalization approach to face what felt like an overwhelming week.

I had boxes for work, homeschooling T, parenting, checking in on Ma, house work, and self care.

The hubby – who is the best tag team partner anyone can ask for – and I divided up the 5 online learning sessions.

When I was online with T, I put work out of my mind – and vice versa.

I scheduled time each day to check on Ma, reminding myself to trust the care that she’s in.

Although the hubby and I worked longer days, to compensate for homeschooling, we made time each day to have fun with T, like taking him outside or to just be silly at home.

Mind you, this all sounds neat and tidy in writing. But it was anything but orderly or chaos free.

T’s meltdowns and resistance to sitting down for virtual learning and requiring a lot of hand-holding made it a trying and tiring week.

But the week flew by thanks to us doing our best to take a one-task-at-a-time approach.

It’s important to take the time to unpack and deal with your stress.

Critics of compartmentalization will say it’s just a way of avoidance and denial.

I’m not a psychologist and can only speak from my experience.

It’s about creating space and time to take out each box in a timely manner to deal with its content.

For me, I visualize it as making sure each box in your life doesn’t gather too much dust.

It’s more challenging for me to do that these days, because time is at such a premium.

But I make time for it in a few key ways, including check-ins with our child psychologist – a wonderful service we’ve been able to tap into thanks to T’s prognosis.

Processing my thoughts through this blog is also helpful.

Taking walks, exercising and getting 8-9 hours of sleep (I do not compromise on sleep!) go such a long way for me too.

I try to take a pragmatic positive thinking approach rather than toxic positivity, which to me is genuine avoidance and denial.

Lastly, I try to be honest about the fact that my boxes only have so much space. So if I have a say in things, I refuse to put content in my boxes that I don’t have the time or need for.

At the end of the week, our province announced online learning is extended for two more weeks.

When I read the news, I thought to myself I’m going to need bigger boxes or perhaps suitcases or even shipping containers!

But I took a breath and put the next two weeks away inside a box in my head and set it aside.

Instead, on Friday night, I dropped off a care package for Ma at rehab and did groceries. This meant I had the full weekend free!

So I focused on one priority for the weekend: to spend quality family time with the hubby and T, recharging my batteries, and tuning out all noise from email, text and social media.

Saturday morning was cold but sunny.

After a video chat with Ma, T and I went for a long walk. The hills in the park had turned to ice.

T slowly crawled up on all fours. When he got to the top, he laid on his tummy and went sliding down the icy hill face first, squealing like an overjoyed little penguin.

I watched him as he did this over and over again for a half an hour. His joyful laughter was heartwarming.

In the afternoon, the hubby and T worked together to pack away Christmas stuff. I love how engaged and helpful T was. So I went for a long walk in the rejuvenating sun and then napped.

At night, I picked up Taiwanese takeout because I was craving braised soy sauce egg, mapo tofu and fried eggplant. It was so yummy!

It’s going to be another gauntlet two weeks ahead but if it’s anything the past month has taught me, just take it one step and one box at a time.

Why Youth Mentorship Matters

The hubby and I binged the latest season of Cobra Kai over two nights.

The Netflix hit series continues the story of The Karate Kid movies 35 years later.

I never watched the films but the show resonates with me, because it tells a compelling coming of age story.

The aspect of the story that resonates with me is when the youth characters – often troubled but full of potential – find a new path through the mentorship of the adult characters, who are also looking for redemption.

Thinking about T, a boy with great potential and challenging needs, you can see how I think about my hopes and fears for his future when I watch the show.

Every youth can benefit from a mentor.

A mentor is described as a caring and responsible adult who can help improve the well-being of a youth by serving as a role model to support their academic, personal and social wellbeing.

In T’s current daily life, he has many mentors – teachers, child and youth worker, daycare staff, and of course, the hubby and I.

Even at age 5, the hubby and I already see and anticipate some of the challenges he’ll have as he comes of age – emotional regulation, academics, maintaining friendship, etc.

A mentor is not a fix-all solution but they can help guide T along the right path, to occupy his time in meaningful and purposeful activity, and to also serve as someone he can look up to and model his behaviour after.

I think about the mentors in my life. One, in particular, gave me a chance when I graduated from university at 23. I can attribute the wonderful blessings in my professional life thanks to this person giving me an opportunity and mentoring me.

I wish for the same in T. Because I do see it – and as evidenced by our painful first day of return to homeschool hell today (more on this later) – that he is going to need hands-on support in the years to come.

I believe that everyone has potential and that one key ingredient in helping one maximize their potential is having someone believe in them and guide them.

Thankfully, we live in a city with wonderful programs for youth, including mentorship programs.

I’m aware of programs specifically for youth with special needs. By the time T is a youth, these programs will likely be even more widely available.

I’m thankful T already has great mentors in his life and I hope for this in every step along his life – especially during the challenging times.

And maybe we’ll get T involved in karate as he gets older too! He certainly has the energy and angst to burn.

Thank You and Goodbye 2020

New Year’s Eve 2019, I played Snakes and Ladders with T.

I said that along the way, we’ll encounter things that lift us up (ladders) or slide us back (snakes), but we keep going till we reach the end.

Little did I realize the foreshadowing of 2020!

The wonderful thing about a new year is that it presents an opportunity to reflect on the steps you’ve travelled and to aspire about the steps you will take in the year ahead.

2020 has been filled with slithering snakes – the pandemic, lockdown homeschooling, family health crisis just to name a few.

But it’s also been filled with many uplifting moments. And these are the moments I choose to carry with me into 2021.

As we depart 2020, I’d like to say thanks to the ladders that helped us along the way:

Thank you for Team T – a wonderful group of teachers, educators, and health and social service professionals – who supported T, the hubby and I through a challenging year. The tremendous gains he’s made and big life changes, such as starting medication for ADHD, were made possible with their support.

Thank you for public outdoor pools. The 4-5 days a week of swimming in the summer heat – and seeing T’s joy and confidence being in the water – are among my most treasured moments of 2020.

Thank you for our provincial parks and the nature oasis in our City for offering safe and soul-soothing respite. One memory tattooed in my heart was sitting on the rocky shores of Killbear with T and staring into the infinity ahead of us.

Thank you for pandemic travel restrictions which forced the hubby and I to get creative with travel plans. We otherwise would never have discovered the beauty of Northern Ontario, see the glistening blue water of Lake Superior, hiked the painting-like trails of Killarney and ventured through stunning Thunder Bay.

Thank you for the quiet moments with T – the countless walks in the sun, the puddly rain, the radiant colours of fall, and the snow. Life with T is often loud and frenetic, so these quieter gentler moments are always a welcomed balance.

Thank you to family, friends and colleagues for helping us get through the speed bumps.

Thank you to the hubby for being the solid rock in T and my life. The low key celebration of his milestone 40th birthday ended up being perfect.

And thank you to the lovable little pest T, for continuing to teach the hubby and I valuable lessons every day and giving us the drive to keep heading forward and embracing life for all its good and bad.

In the words of one of my favourite artists: “Turn to stone, lose my faith, I’ll be gone before it happens.”

Wherever you are visiting from, wishing you a wonderful new year and all the best in 2021!

First Visit from the Tooth Fairy

T lost his first tooth last night! You’d think by the loud screaming from his room, something terrible had happened, but it was just his excitement.

Naturally, he became very excited about his first visit from the Tooth Fairy and said he wanted to stay up so he could say hi to her – and to which I quickly replied, “Oh no, you’re not!”

He flashed his toothless smile with pride. It was adorable and you could already see his first adult tooth half emerged from his gums.

A colleague once told me to enjoy the childhood years, because they fly by – and they really do!

So indulging in a make believe fantasy such as the Tooth Fairy – although she’s very real in T’s mind – is just part of the joy and wonder of childhood.

The hubby put T’s baby tooth in an envelope and asked T to put it under his pillow. I could hear the excited conversation from my room while the hubby sat with T till he fell asleep.

After he fell asleep, the hubby asked me for cash. I asked him how much a tooth is going for these days and he said, “$2 to $5.”

I balked and gave him $2. I get that we need to account for inflation and cost of living increases but this was the first tooth of many more to come! I ain’t going into poverty over the Tooth Fairy.

The hubby, in his wonderfully creative and thoughtful way, printed a certificate he found online (pictured at the top) that he presented as from the Tooth Fairy.

This morning, T excitedly went into the hubby’s room to show him what he got. Then he came into the guest room, where I’ve been staying as I’ve been visiting Ma in the hospital.

Seeing the wonder and awe in his face was worth the innocent charade we’re indulging him in.

T asked for the certificate to be placed on the fridge and said he will put his $2 into his piggy bank.

A visual tool provided by T’s behaviour therapist that we use to help him learn how to brush his teeth.

A Silent Merry Christmas

Despite the unrelenting challenges that keep coming at us, the hubby, T and I enjoyed a quiet and peaceful Christmas.

T’s excitement was palatable. The last two weeks, we counted down the number of days till Christmas.

“What’s 9 minus 1?” I asked him at one point last week.

“I dunno,” he responded.

“If there were 9 days until Christmas and 1 day has passed, how many days left until Christmas?” I rephrased the question.

“8 days! 8 days until Christmas!” He exclaimed with unbearable excitement.

The trick with teaching kids math, you see, is about putting things into context for them!

Before bedtime on Christmas Eve, T put out a glass of milk, cookies and carrots for Santa.

After he passed out, I took out the gifts Santa (aka the hubby) had bought and meticulously wrapped for T and put them under the tree and wrote a note of thanks to T from Santa.

Childhood is so short and T will one day outgrow Santa, so might as well have fun while we can.

T gave us the best Christmas present by letting us sleep in till 9. Then he charged into the room and said, “Time to wake up. It’s Christmas!”

We put on our Santa hats, took a few family photos and then opened gifts.

T got a whack of gifts from his parents, grandparents, family members and our friends who either mailed or dropped them curbside.

We’re so blessed with an amazing support group of family and friends. Since learning about my Ma’s stroke, friends and cousins have dropped off lasagna, fried chicken and other care packages.

They all understand that time is even more of the essence and gifted us time for the coming weeks.

“What do you think the chances are of someone dropping off a cooked turkey?” I asked the hubby jokingly.

Ma and my aunt each gave T a red envelope, a Chinese tradition of putting money into a lucky red envelope.

Ma is always the first to admit she doesn’t know how to buy gifts, so she gives money to help invest in his future education instead.

I will admit I felt a bit embarrassed and a tad appalled at how many gifts T got. It probably was more than I ever got in total as a child.

I strongly believe in trying not to spoil a child, because they will grow up not appreciating things. But then I let that feeling go this year and I allowed the hubby to go over the top with Christmas, because of how shitty of a year it’s been.

The hubby and I don’t usually exchange gifts but this year we did, again cuz, you know, pandemic.

I asked for Junji Ito’s horror graphic novel, Remina. Because nothing gives hope and cheer like a story about a planet-eating planet.

The hubby and T then dropped me off to visit Ma at the hospital. It was so nice to see her.

She is doing so much better but we still have a long recovery ahead. But we are thankful for every day that she gets through.

I got back home in the late afternoon and just relaxed – alternating between quiet time by myself and playing with T and his new toys.

Whoever invented self-flying drones for little kids must’ve really hated their parents. Jokes aside, it’s actually a really cool toy!

We wavered back and forth between having family over for dinner but we ultimately decided to respect lockdown restrictions and kept it to our family, because we didn’t want to risk anyone getting sick.

The hubby prepared a delicious turkey dinner, his specialty.

I’m not usually a wine or alcohol drinker, but a friend gifted us a nice bottle of rosé – and cuz, you know, pandemic.

2020 has tested our family like no other but the holidays remind us that a family endures and perseveres.

I am hanging onto that hope as we look ahead to a brighter new year.

Wherever you are joining T, the hubby and I from, we want to wish you all a Merry Christmas!

Like a Pure White Diamond

This Monday, Jupiter and Saturn came within the closest distance to each other in 800 years, forming a Christmas star.

It lit up the sky like a white diamond on the shortest day of the year. It was a symbol of hope that brighter days are, quite literally, on their way.

2020 has been such a rollercoaster year. While it’s nearing its end, the challenges continue to come at an unrelenting pace – whether it’s our province re-entering a full lockdown or unexpected family hardships.

Despite this feeling of dark heaviness, I am so thankful there are reasons to feel gratitude and hope.

Firstly, T is in daycare this and next week – so it takes the pressure off us to look after him, as I had originally booked these two weeks off from work to recharge.

I’m spending the free time just relaxing when I can, because my family is about to embark on a marathon as Ma starts her recovery.

Part of my wellbeing regime is listening to music. Australian pop star Kylie Minogue’s music always cheers me up.

I listened to her song “White Diamond,” written a decade ago when she was facing cancer. Its lyrics resonated with me in a new way.

I reflected about diamonds. They are beautiful jewels that are formed deep within the Earth’s darkness from carbon being subjected to intense heat and pressure.

That’s really what this past year has been all about. This is what adversity is about. These moments take us – as individuals, as a collective – and subject us to such incredible pressure, while burying us within a deep darkness that we feel like we’ll never get out of.

But for those of us who get through it, we become richer and brighter because of these experiences and we radiate with a renewed sparkle because of the valuable lessons we’ve learned.

I don’t quite know what will happen in the road ahead, but I know we will get through it somehow and be all the better for it.

White Diamond by Kylie Minogue

I know that it’s getting too much, baby
But you don’t need the words to say
Sometimes you feel you’re at the end of the line
But tonight it’s gonna fade away

You’re looking out from the darkness
Feeling so alone and you need a flare
Well, I’ve got the light that’s gonna treat you right
And illuminate what’s already there

Understand I will be there for you
Understand I’m a diamond for you
A white diamond for you

And just like a burning radio I’m on to you
Your spell I’m under
In the silver shadows I will radiate
And glow for you

What you see and what it seems
Are nothing more than dreams within a dream
Like a pure white diamond
I’ll shine on and on and on

Photo Credit – Alex Andrews posted on Pexels

“Grown Ups Don’t Cry…”

Life can change in the blink of an eye: our Ma had a stroke on Friday.

Yesterday, Friday morning, was a normal one. By the evening, I was in the Emergency ward receiving quite the unexpected news.

Thankfully, she is awake and seems to understand what’s going on. But her speech is slurred and mobility impacted.

My sister and I are taking turns watching her as we want her to be with family 24/7 during this critical period. Due to COVID, only one guest can be with a patient at a time.

We’re thankful we have such a supportive family. This morning, my mom’s siblings and our cousins around the world joined together for a short Facebook video chat. It made my mom happy and we were relieved she recognized everyone and knew it was Christmas time by greeting them.

I was delirious by the time I went to bed at 11 this morning and I feel more human after sleeping now that I’m back for my second evening shift.

Ma is now sleeping so I’m filling the time as I always do by trying to keep busy.

When I’m stressed out, I try to maintain calm and order by planning.

At 11 last night, I emailed colleagues instructions to look after in my absence.

At 4 this morning, I emailed the hubby to ask him to set me up – clothes, bottled water, etc – in our guest room and to move T’s stuff out of his bathroom into ours and mine into his. I want to semi quarantine myself into that corner of the house as I will be spending lots of time at the hospital over the coming weeks.

I am doing all of this – including writing this post – because I’m trying to distract myself and not to think about more serious matters.

T could sense that something is different. The hubby and I told him that “Ama” is sick and is in the hospital. That’s why I have to be out of the house to take care of her.

He was very calm and compliant today because he is likely picking up on the somber mood.

He left me alone while I slept most of the day but did open the door to see how I was doing at around 5pm.

I started to tell him that Ama was sick and then I started crying. I couldn’t help it.

“Why are you crying?” He asked.

“Because I’m sad and scared,” I said.

“Grown ups don’t cry,” he said adamantly.

I kind of chuckled when he said that.

When we were getting ready to drive to the hospital to drop me off tonight, I didn’t need to ask T 10 times to put his shoes on. He just did it at the first ask.

He also did a short “Feel better, Ama” video that I shared with Ma this evening.

After Ma saw the video, she told me, in a still slurred way, “I want to stick around to see T and the little kids (in our family) graduate.”

I just lost it. I tried so hard not to cry but couldn’t hold the tears back.

Then she said, “I will be fine. Because I am the survivor type.”

We’re not out of the woods and the next few days will be scary. But it is reassuring that she still has her melodramatic flair.

The Little Boy in the Park

An unexpected connection with a seven-year-old boy is teaching T about the highs and lows of friendship.

It started two months ago, in warmer weather. At that time, T had developed a bond with two older boys, whom he played with regularly after I picked him up after daycare.

Then one day, S started to play at the park with his dad.

For the first few days, we each kept to ourselves. Then I encouraged T to play with S and to include him with the older kids.

As the days drew shorter, the older kids stopped coming to play. So it was just T and S.

They started to play together. T would initiate his game of tag and S would initiate his own games.

S’ dad and I slowly started to talk to each other and found common interests, like politics.

I learned that S was doing virtual school and was a single child like T.

As with any new relationship, I initially felt on edge about T when he’d have one of his moments; like screaming when he doesn’t get his way or getting into S’ personal space and annoying him.

The worst moment so far was when he took S’ glove, because he felt like it, and was chased by S. S was angry and punched T and then T got upset and pushed him to the ground.

S’ Dad is very understanding and in return, I ask T to apologize for his moments.

But interestingly, it’s not always T who has the moments. I notice S has a strong personality like T and stubborn moments of not giving into T’s demands too.

And you know what, it’s very refreshing to see T get a dose of his own medicine. And to use them as teachable moments.

Recently, while playing in the field, S accidentally threw a hard snowball at T’s face. Cue the crying and tears.

I was just glad it wasn’t the other way around!

But what I’m most thankful for is that it’s been mostly wonderful moments between them.

I love how excited T gets when he runs out of daycare towards the playground to see S.

There was a stretch of three consecutive days when S did not come out to play because of bad weather.

T was sad and cried that he missed S. Then on the day S came out again, T ran so fast to him, screaming, “S!!!”

I am very appreciative the Dad seems like a down to Earth and level headed parent. The fact that T’s hyperactive and loud personality and frequent outbursts have not deterred him from continuing to bring S out to play with T has been a blessing.

He’s confided a few times about his concerns about S. So I openly shared T’s own prognosis and challenges.

Last week, they invited T and I to join them sledding at the park by their house – down the street from T’s daycare. And it was a lot of fun!

I had a chuckle when T’s mom joined us and asked, “Are they friends or enemies today?”

I guess that’s the sign of a good friendship is when you can navigate the ups and downs and still want to hang out with each other.

And I am so thankful for that.

And I love that even during these super cold winter nights, the two boys are still playing in the dark and dimly light playground – having it all to themselves because all the other kids are staying warm inside.

During one recent outing, S asked T if he could go over to their house after the coronavirus goes away.

T then asked if S could come visit our home.

I found that such a sweet moment.

As we left the playground that evening and they walked us to the parking lot, T and S gave each other a big hug.

“I love you, S,” T said.

Adventure in the Philippines

During these cold and dark pandemic days, I long for and fantasize about travel.

Since travel is not an option, it’s been fun to look back at travels of the past.

Over 10 years ago, long before T entered our lives, the hubby and I went on an amazing three-week vacation to the Philippines.

I relived this adventure with a guest post on the excellent travel blog, Strong Traveller, titled Top 5 Reasons Why It’s More Fun in the Philippines.

I shared some photos included in that post below: Beautiful beaches, amazing scenery, delicious seafood, island hopping, ziplining and more.

We’ve always dreamed about exploring the world with T and we look forward to taking him to visit Asia one day. It gives us hope to think about traveling again one day post pandemic!

PS. If you’re looking for another excellent travel blog, I really enjoy Wandering Canadians, which has provided a wonderful way to explore the beauty of our local provincial parks in Ontario.

The Chocolate Hills in Bohol
The White Beach in Boracay
The deck we sat at for breakfast overlooking the water at the small cottage resort in Bohol
I still dream about the curry crab and shrimp dinner.
Ziplining Superman style in CDO
Blue starfish found while snorkelling
Seafood cooked fresh at the market after you buy it

Focusing Again on Potential and Growth Mindset

“There needs to be a lot more emphasis on what a child can do instead of what they cannot do.”

I saw this quote shared recently on Twitter by Surrey Place, the wonderful agency that has been supporting T since he was 1.5.

I reflected on this quote by Autism spokesperson and advocate Temple Grandin this past week as we’ve had a particularly hard week with T.

His behaviour felt out of control. Simple tasks like getting his teeth brushed , getting him dressed after his shower and winding down for bed all felt so draining.

His daily school log seemed less positive, with lots of instances of him getting into peers’ personal space or being restless and not sitting still when he’s supposed to.

Other than irritation at T’s behaviour, I was not bothered by the last week.

We’ve been down this road before and I know sunnier days are on their way. Just have to ride it out, learn from these moments, and move on.

Raising T – a child with great potential but challenging needs – may seem like a dance of two steps forward, three steps back.

But if anything that the last year has taught me, it’s that we gotta stop focusing on the downside. When you’re looking down, you often don’t see the path ahead of you.

And there’s nothing wrong with taking a step back. Sometimes, taking a larger step back allows one to take stock of everything that they’ve done and the road they’ve travelled.

I’ve written in the past about my strong belief in the growth mindset.

I don’t care about perfection or being the best. What I care about when it comes to T – and to myself too – are the incremental gains.

Every day, I pray that he grows a little more each day – mentally, physically, emotionally and spiritually.

I believe every child has a potential and that every child has their own journey. The yard stick we should measure them against is not with another child, but with themselves.

And it’s the hubby and my job to guide him towards his potential in life.

I’ve been doing a lot of reflection around potential, because another year is wrapping up and this dumpster fire of a year will soon be behind us. Thank Christ.

It’s also been a year since I started this blog. It’s become a wonderful hobby and therapy and to do my part to raise awareness.

Thank you to you for following along and to those who take time to comment and to share your journey and/or words of encouragement.

To those of you following along more quietly, the support has also been very encouraging!

I recently went into my office, the first time since lockdown began in March.

A package had been left on my desk. It was a parcel from a former supervisor, now retired.

She gave me a Slap-On Sanitizer, an invention by her son that gives kids a pragmatic way to carry and easily use hand sanitizer during these germy times.

Along with this gift was a handwritten letter sharing with me that her son, like T, had been kicked out of his school at a young age and he ended up doing fine, even inventing a product.

I really appreciated hearing that wonderful story and it reminds me that while I don’t know what the future holds for T, there is always reason to focus on potential and on the bright side.

Our Son’s Adoption Baby Book

The hubby and I took out T’s baby book a few Saturdays ago. We were feeling nostalgic. For the first time, we shared its contents with T.

Contained in this scrapbook are photos and letters from T’s first 14 months of life, before he moved in with the hubby and I and became part of our forever family.

The book was lovingly put together by T’s foster mother, who had been with T since his second month of life.

The hubby and I treasure this book so much, because it provides us with a link to the moments in T’s life that we were not a part of.

When we first open the book, we see a lovely letter T’s foster mother typed up that described T’s early days – details about his birth mother and how T came into the care of his foster family.

Throughout the book, there are wonderful photos of T in his early moments of life.

I love the photos of T with his foster parents, foster brother and foster siblings, because it makes me happy to remember that he had a happy, loving and stable life before he came into ours.

I treasure the photos of his firsts: Easter, Halloween, Christmas and letter from Santa; first smile at 2 months, first time sitting at 4 months, first time pulling himself to a stand at 11 months.

We still keep in touch with the foster family, because it’s important to us that T has a complete sense of self. We last saw them back in February – before the pandemic lockdown – to celebrate T’s 5th birthday.

Since T was three years old, I started incorporating a simplified version of T’s adoption story into our bedtime story routine called “The T Story.”

This year, T started to ask deeper questions about this story and so I used the word “adoption” for the first time and told him that he was adopted by the hubby and I.

Then he started to ask more questions about his foster family, about why we adopted him, about whether or not he was going to go back to his foster family.

I think it’s wonderful that he is asking these smart and thoughtful questions. It means he is ready to have these conversations.

It doesn’t always feel comfortable to answer his questions. But the hubby and I always keep it real and age appropriate with him.

I can tell that T is processing these tidbits – these puzzle pieces that form his big picture of himself.

That’s why we shared the scrapbook with him for the first time a few weeks ago.

It warmed my heart watching him look at the pictures and to see that he was so loved from the beginning of his life.

On the second page is the only picture that we have of his birth mother. The hubby was open and honest that this was his mom.

We noticed that T was very quiet. He did not react or say anything until he moved onto the other photos in the book of himself and his foster family.

I’m sure his mind was processing what it all meant.

It is a story to talk to him about on another day when he is ready.

Celebrate the Daily Incremental Successes!

I’m grateful to work from home during the pandemic, because I can stand on the steps every morning and wave to T as the hubby drives him to school.

As I watch the car disappear down the street, I say a silent prayer. I ask for T to have a positive day that includes incremental growth, learning, friendship and happiness.

Most days are good. Some days are great. And some are not as great, even disastrous.

It’s hard to believe it’s been almost a year since I started this blog.

One thing that motivated me to start this blog was this time last year, our school board cancelled the specialized kindergarten program, of which T was around one of the 25 or so kids in 7 classrooms across the city that benefitted from the early intervention supports provided on social behaviour so that kids could be better prepared for grade school.

I wanted to do my part to advocate for T and for children like T – in an anonymous way that honours his privacy.

This weekend, as friends in America celebrate Thanksgiving, I pause to remember that there are so many things to be thankful for.

For me, it’s the daily incremental successes.

When you are a parent – special needs or not – you are so mired in the daily mineutia, the weeds of the trenches, that you often forget to step back and look at the big picture.

As I sit here at our dining room table sipping my morning coffee and watching T play with Balloon Santa, I see a tremendous growth in him compared to this time a year ago.

His language skills are great. I love that he and I can have fun and deep conversations and that he asks me hard questions.

The hubby and I see his pre-reading and pre-math skills emerging. His child and youth worker recently told us that he is above average in his class with reading and math.

While he still struggles with hyperactivity and focus, with the combined help of his child and youth worker, using behavioral modification strategies, and starting medication this summer, he’s come such a long way with being able to sit still and focus on a task.

While getting him to comply with daily routines can still be a patience-sapping challenge, there are far less meltdowns.

And he is such a wonderful, keen and capable helper at home and at school.

I try to be honest when I shared the ups and downs of raising a child with great potential and challenging needs.

Often times, this may give the impression that T is all problems and challenges.

I would say that life with our T is mostly 80% great and 20% very hard. I would consider that a good ratio!

One of the most important lessons I’ve learned this past year is to celebrate every incremental success together.

About a week ago, the hubby received an excited call from T’s child and youth worker. She told him that T had his best day ever at school.

Every night, when T and I come from daycare, the hubby is standing in the foyer with his arms open and a smile on his face as the door swings open. T runs to the hubby and gives him a big hug.

That evening, T got an extra long and tight hug.

We read – as we do daily – her daily report in T’s school log out to T.

“This was the best work I have ever seen T do! He was very focused and did not scribble all over the page! Great work T!” She wrote. “T did an excellent job reading today. He went over to the teacher without any complaint! Great job!”

The hubby finished reading and T had a proud and self-satisfied smile on his face.

Without skipping a beat, he asked, “Are you going to tell Santa?”

Challenging Conversations with Family: A Child with Special Needs

During a recent chat with an aunt, she asked me if I ever regret adopting our five year old son.

The question caught me off guard.

She had not seen T in over a year and I was updating her on some recent challenges, including being confronted by an angry parent.

I told her without hesitation, “No. T is the best thing that’s happened to the hubby and I.”

And I meant it. Sure, he has challenging moments – almost on a daily basis – but there is so much love and joy we get back in return.

The question made me pause because it seemed so inappropriate.

But I didn’t make a fuss, because I know my aunt loves T. Her frankness is just part of age and the Asian bluntness.

Then I told my aunt T has recently developed a wonderful friendship with a 7-year-old boy and they’ve been playing together every day after daycare in the playground.

Surprised, she asked, “Is there something wrong with the boy too? Or is he normal?”

Again, if it wasn’t for me being used to Asian bluntness, I would’ve called out the inappropriate comment. I simply replied he seemed normal and added, “By the way, T is a normal child.”

Like, what does normal even mean?!

The conversation reminded me about the challenges that parents often have with helping their families understand the reality of raising a child with special needs.

First off, the hubby and I are very blessed to have families that love T. They may not fully understand the reality of raising a child with great potential but a prognosis of at-risk FASD but the love is undoubtable.

The hubby and I are very honest about T’s challenges. We don’t hide or sugarcoat things.

One area that was challenging in the beginning was making family members understand his challenging behaviour is a result of a brain-based disorder and not because he is a bad kid and that traditional types of discipline do not work.

I can’t count the number of times when our parents or uncles and aunts have tried to discipline or call T out for his behaviour.

One time another aunt tried to lecture T when he was having a meltdown and hit her. She later sent me an email saying that we needed to be on top of T’s behaviour or it’s going to get worse. She even bought me a book on parenting!

I responded in a lengthy email explaining T’s prognosis, explained the strategies we use – including riding out a meltdown instead of throwing fuel in the fire – and asked her to take our lead in the future.

My aunt is well intentioned and has raised a daughter with Down syndrome. So she understands special needs. What helped was giving her more information about T’s specific prognosis and once she understood more about it, she now takes our lead.

It’s important to set boundaries with family.

I am always grateful for the love that our family provides T, but the hubby and I are clear that we are T’s parents, so leave the parenting to us.

We tune out unsolicited parenting advice, parenting articles, and yes, parenting books too!

We focus our efforts instead on educating family – and friends, colleagues, school staff and others – about his needs and challenges.

We keep it real, because that’s important.

We also try to challenge stereotypes and labels about “special needs.”

T is a bright, funny and caring child. He has a tremendous spirit for adventure and he’s had many amazing life experiences already.

So many positives to celebrate. I want to remind people – not just family – to focus on these while keeping a proactive eye on the areas of need.

So when I think back to my recent conversation with my aunt, it reminds me that educating family is an important part of being the parent of a child with special needs.

These conversations may be tricky and sometimes cringe-worthy awkward, but they are worth the investment in time.

Santa, Snow and Soothing Hong Kong Style Borscht

Thanks to the shorter colder pandemic days, we started Christmas early this year.

Last weekend, we celebrated the hubby’s 40th birthday. He and T also set up the Christmas tree.

We also unboxed our 8 feet tall balloon Santa, who had hibernated in our basement.

To say T was excited was an understatement. He had been missing Balloon Santa all year.

This past week, he wrestled with Santa and every day before he left for school, he hugged and kissed Santa and told him, “I love you, Santa.”

The hubby also wrapped white Christmas lights around our front yard trees, pictured at the top.

I normally find Christmas music so irksome, but it’s been so soothing this year. Give me Mariah on repeat for the next 12 months!

Our province is entering a modified lockdown at midnight tonight. We are all feeling weary of this unending pandemic. So all the seasonal cheer and light we could get, we will take it!

We got our first snowfall today.

As with any snowfall that’s over 1 cm thick – it was about 15 cm today – the media start to panic.

It started to come down as T and I were having breakfast. He excitedly went to look outside.

An hour later, with snowsuits on, we ventured outside for a walk. It was so beautiful outside.

An elderly man whom I see regularly outside commented that T is always out.

I told him that I like T to get outside. I want him to be a four-season kid with Canadian grit.

We went back inside to eat lunch after and then went back out again, this time with his sled.

I love watching T have fun. He was in his element rolling around in the snow.

In addition to sledding down the hill, T loves to ride his sled down the metal slide in the playground. Cuz why not?

On cold days like today, soothing soup is what the soul calls for.

So I made this Hong Kong style borscht soup that I’ve been wanting to make for ages.

I used this simple Amy + Jacky recipe for the Instant Pot.

Lots of chopping but cooking helps calm and centre me. Prep aside, it was very easy to make and so delicious. Will definitely make this again!

To keep the theme going, I made Hong Kong cafe style toast with condensed milk for dessert. No picture but trust me when I say that everything tastes great with tons of condensed milk drizzled on top!

Wherever you are visiting my blog from, I wish you much cheer and light over the coming weeks. We still have a long road ahead with this pandemic, so however you are getting through these times, please take care and stay well!

Confrontation with an Angry Parent

During a daycare pickup this week, the staff told me T threw a toy at a boy and caused a bump on his head.

They said the parents were upset, because it’s not the first time T and this boy have had issues.

I told the staff the hubby and I will speak with T because we take responsibility for his behaviour.

Our routine is to play in the playground after pickup. Recently, there is a 7 year old boy who T has hit it off with and his dad brings him to play with T every day.

As T and I were walking to the playground, I am stopped by a man who was visibly upset. He pointed to T, who was running towards his friend.

“Is that your son?” He asked. Judging by the tone of his voice and the rage on his face, I figured out this was the angry parent.

I confirmed I was T’s dad.

He then dialed a number on his phone. A woman’s voice came on. It was his wife, who spoke in English because her Chinese husband was not fluent.

She was audibly upset and reiterated the situation that had happened.

I said I was sorry that T did that and I’ve already spoken to him about it and would speak with him again that night.

The mom said this was not the first time our kids have had an issue.

I told them that I couldn’t comment because I was not aware of the history.

“So this is the first time you’re hearing about this?” They asked, implying the daycare staff were not addressing T’s behaviour with me.

I explained that daycare staff bring up incidents but they do not mention specific names – like their son – out of privacy.

The dad was shooting eye daggers at me. It was incredibly uncomfortable.

But all I could do was reiterate I am sorry, that I take responsibility for T’s actions and that I’ve already spoken with him about it.

But they were not getting the answer they wanted. They were wanting me to agree with their implication that T was a bad child and a bully.

And frankly, I was not going there, because it was not true.

And I stood up for T. I told them that while I acknowledge that what T did was wrong, I also want them to know T is not a bad kid.

Then I apologized that I had to leave to be with my son and I politely walked away.

That incident really bothered me. I was so upset about it – for multiple reasons.

I was upset that it happened. It was a reminder that despite the many gains we’ve made, T is a work in progress.

I was upset that I had to be yelled at by two angry parents for very valid reasons and for actions that T made.

I was upset because it was another parental complaint we’ve had to deal with this year.

During the car ride home, I spoke about it with T again.

I asked him how he thought the incident made his classmate at daycare feel. He was silent. That to me tells me he was remorseful and guilty.

The daycare staff did say he felt genuinely remorseful.

This was certainly not the first time a parent had complained about T and his behaviour.

But this was the first time I’ve had an actual confrontation with an angry parent and it was incredibly uncomfortable.

On one hand, I empathize and take responsibility for T’s actions and I was genuine when I described to them the steps I would take to teach T about what he did.

On the other hand, I have to continue to be T’s advocate. These parents – at no fault of their own – have no idea about the additional challenges T has to deal with on a daily basis nor do they realize the tremendous, I repeat, tremendous gains he has made this school year with social interaction and behaviour.

I don’t expect them to care. I expect any parent – as I do – to focus on their child and their best interests.

So I get their anger.

But I am not going to go overboard with my apologies, nor throw T under the bus.

I’ve apologized for his actions and I’ve committed to speaking with him about it and to do my part to teach him to do better. And I will continue to do so in the future, because there will be more of these incidents.

But that is where I draw the line. I will continue to focus my energies on the bigger picture and the journey ahead.

I’m not looking to win a Parent of the Year Award but I most certainly am laser focused on being the best parent and advocate, along with the hubby, for T.