One thing she said struck me immediately: her goal is for T to complete 25% of the Grade 1 curriculum.
I’m an honest and heart-on-my-sleeve person so I immediately voiced my concern and asked if this would mean we start to widen the gaps between T and other kids. How would he ever catch up?
I explained that while the hubby and I recognize T’s prognosis, we hope that disclosing it would not mean teachers use it as a reason to dismiss T’s potential to learn and grow.
His teacher reassured us that she has worked with many children with special needs and explained the purpose of setting IEP goals is to ensure T can feasibly meet these goals and to scaffold his learning.
If T is able to meet these mutually-agreed upon goals, she will continually adjust and increase them throughout the year.
She reassured us that, if anything, she will try even harder with T.
I believed her, as I have a good feeling about his teacher this year.
“I must be taken as I have been made. The success is not mine, the failure is not mine, but the two together make me.”
– Charles Dickens, Great Expectations
But I did ruminate about this for a few days after and felt that familiar sense of grief: when the reality of your dreams for your child clashes against the challenging reality.
I’ve written many times that T is a bright, caring, funny, determined and strong-willed child. I still believe in this wholeheartedly.
But I can also see that his academic journey is going to be challenging. There is no doubt the next few years will be very trying.
I have a love-hate relationship with the term “special needs.” I hate the stigma that is attached with this label and find that it can be damaging when it is applied by people who don’t have a full understanding nor are equipped with the tools to support an individual with additional needs.
My biggest worry is that people will limit, dismiss and not try as hard with T, because they will think about why they should even bother or they lose their patience with his exhibited behaviour.
But I also recognize that in order to build empathy and understanding – and to also advocate for and to receive the resource supports for T, we need to engage in open and respectful dialogue about his needs.
“I have been bent and broken, but – I hope – into a better shape.”
– Charles Dickens, Great Expectations
We have been very fortunate so far to have met understanding and empathetic professionals in the school and daycare system. We know it won’t always be like this.
For myself, the mental hurdle I always have to leap over is recognizing that adjusting my expectations – such as breaking down T’s learning goals into bite-size feasible pieces in order to build his long-term confidence and success – is not the same as lowering my expectations for him.
If anything, the hubby and I have higher expectations for T, because of the additional effort he requires from us on a daily basis.
I have to remind myself that T is on his own journey and the yardstick we measure him up against is himself and not other kids.
Most days, this is an easy mental model to follow. On some days, especially the frustrating ones, it is tempting to lose sight of the target and to start drawing comparisons with other kids.
It’s a good thing T is an easy kid to love and reminds us through his magical moments of pure endearment to always keep our eyes on the prize.
If it’s bitter at the start, it’s sweeter in the end.
I reflected on this during a two hour drive home from Honey Harbour, a scenic set of islands along Georgian Bay, where the hubby, T and I spent Saturday with my aunt and two cousins.
We woke up early to ensure we arrived at 9:30 for the boat taxi to take us to the island.
The 10-minute boat ride over was beautiful, as we daydreamed about owning one of those cottages by the water and tiny islands.
T sat the back of the fast-moving boat, enjoying the foamy waves, feeling the wind on his face.
This weekend marked the end of the first month of school.
As a whole, things are going ok at class and daycare. But we are also dealing with daily frustrating challenges.
Simple tasks such as getting ready are battles, often resulting in tantrums, with toys thrown at us, angry words exploding out of T’s mouth.
T has had a few rough moments with peer interactions – but we are thankful for the support of a temporary Child and Youth Worker and wonderful staff at school and daycare.
Evenings are often tough around bedtime. His teacher has started assigning daily reading homework. You’d think this would be easy, but just getting him to focus is tiring as there is always an excuse to not do the task.
So it was with his mindset and deficit of energy that we entered this weekend.
Our day at Honey Harbour was great in the grand scheme. T was in his element, charging up and down the beautiful granite hilly trail. He can be a parkour artist one day!
The challenges came with his impulsive hyperactivity. We repeatedly told him not to dig up the moss or wild mushrooms, which could be poisonous, or to step on the muddy puddles.
So he dug up the moss every few steps and threw them at the hubby and I. Picked up wild mushrooms and pulverized them in his hands. Stomped on muddy puddles and ruined his brand new shoes. The whole time laughing and thinking the hubby and I were amused.
It was good for my family to see this behaviour. I sometimes feel like people don’t quite understand when I explain T’s challenges.
But as always, I framed it as challenges related to his neurological condition: hyperactivity, lack of impulse control and difficulty with learning from consequences. Reiterating that T is not a bad kid, he just has challenges many kids don’t as a result of prenatal alcohol exposure.
Other than his frustrating moments, T was at his charming best.
He was very playful with his Uncle J, whom he really likes. He helped my aunt and my cousi walk down the slippery downhill spots. He gave them big hugs.
During a picnic lunch stop, my aunt noted that she noticed he is a lot calmer than before. I thought that was very kind of her to say.
Sometimes, the hubby and I are so mired in the weeds that we forget to take a step back to see all the gains T has made.
He can be so frustrating and irritating, but he has also made tremendous progress.
I need to remind myself, especially during the hardest moments, to celebrate and focus on that.
According to experts, a hive of bees must travel up to 55,000 miles to produce a single pound of honey.
As I stood at the scenic lookout points at Honey Harbour, while our T, coincidentally wearing a bright yellow hoodie, flitting about like a busy bumblebee that’s ingested a pound of speed, this is what it means to be his parent.
It is a shit load of work, probably requiring more effort than an average parent would exert in their day, but there is sweetness that comes through this laborious process.
T was having a blast in nature, running about and exploring with abandon and enjoyment.
If it’s bitter at the start, it’s sweeter in the end.
I often think about the important life advice I want to share with T as he gets older.
This past Saturday, I came across a song by the late Swedish DJ Avicii, whose soulful work I’ve long admired, called “The Nights.”
Its simplistic lyrics, told through the perspective of a young man recounting his father’s advice, deeply resonated with me.
He said: ‘One day you’ll leave this world behind.
So live a life you will remember.’
My father told me when I was just a child
‘These are the nights that never die.’
– The Nights
Every parent has their own perceptions of the important things to impart to their child.
One of my dearest friends gifts T with a book for every birthday. Her latest gift is Oliver Jeffers’ “Here We Are: Notes for Living On Planet Earth,” a book the Irish artist wrote detailing what he felt his newborn child needed to know.
Growing up, I always got the impression from my parents that I needed a good education and a well-paying job to be successful.
My mom always hoped one of her kids would become a doctor and has transferred that hope to T, even after I’ve reminded her that while we won’t limit him, his prognosis will make school-based learning challenging.
My parents weren’t wrong that working hard in school and life is important, but I’ve learned to use other metrics of success.
First and foremost, happiness = true success.
From that flows the values and hope that I would like to impart to T:
Work ethic and enjoyment over status
Life experiences over material things
Comfort, health and kindness over wealth
Quality over quantity of relationships
Journey and process over destination
You are never alone in this world
Daddy and Papa are always here for you
Define for yourself what happiness means to you – then work and fight for it
In my prayers, I often ask for T to live a life with happiness, good health, self sufficiency, rewarding lasting relationships, and the ability to contribute positively to the world and to himself.
Whatever that looks like for him, I’m open to all possibilities.
One day my father, he told me
‘Son, don’t let it slip away.’
He took me in his arms, I heard him say
‘When you get older
Your wild heart will live for younger days
Think of me if ever you’re afraid.’
– The Nights
On Saturday, we had a rough start to the day. The smallest things – getting ready to go for a walk, practicing reading – felt like a battle.
Feeling frustrated, I left him in the hubby’s care and went to the gym to let off steam.
Later at night, I was lying in bed reading the news, when T came in to snuggle and asked if we could look at photos on my phone.
I thought about how much T loves Luca and what a picky eater he is. So I had to try making this, in the hopes of adding a new dish to his limited rotation.
BuzzFeed recently made the Luca recipe as provided by Disney’s marketing team.
I stuck with the Pasta Queen recipe, which has almost all of the ingredients for trenette el pesto: fresh basil leaves, garlic cloves, pine nuts, pecorino Romano, parmegano reggiano and extra virgin olive oil.
The Disney recipe also includes green beans and potato. But whatever.
Our 6 year old was bugging out and we tried to help him find a new way to look at his fears.
We first noticed this behaviour in July, when he’d hyper-focus on flying insects: everything was a “bumblebee”, including flies, dragonflies, mosquitoes and yes, bees, wasps, hornets.
He’d become frozen in fear, asking for our help to walk down our front steps because he was afraid he’d get stung.
The hubby and I were not sure how it all started and we also knew fear of insects is normal.
But we also just began summer and we didn’t want it to affect plans we had to explore the outdoors, where there were bugs everywhere!
Thankfully, T was still game to do our outdoor activities – hikes, roadtrip, swimming in the wild. But unlike previous years, a lot of his attention was on the bugs, either not wanting to be stung or wanting to swat them.
And the kid wonders why they could ever want to sting him!
I did have a lot of empathy for T.
When I was 7 in the Philippines, I was watching TV on my parent’s bed when I felt something crawl on my leg. It was a big cockroach!
I screamed and swatted it off my leg and then its wings spread open. I jumped off the bed screaming as the roach flew after me out of the room and into the living room. I jumped on the couch and turned around and saw this roach flying towards me.
I felt so creeped out about insects for many years after.
So it was with this mind that I knew we had to try a different approach other than, “Relax, they’re not going to hurt you.”
It was important to validate T’s feelings, while trying to find a productive healthy way to help him face his fears.
As someone who works in information services, I thought the best way was to share factual and fun information about insects – and to show T that insects are nothing to be afraid of and in fact, are very cool.
So I first found a few age appropriate videos about bees and we watched them.
We learned about why the bumblebees buzzed about busily in our garden next to our front steps. What a surprise: they were collecting nectar and not waiting to attack T!
We learned that bees do sting people, but they only do so when they are afraid or angry. We learned that when bees sting, they die. So they have to be really scared or angry to sting someone!
So every time we were outside and T got into one of his perseverating moods about “bumblebees,” I reinforced the same message, “Bees only sting you when they are angry or scared, so just leave them alone and you’ll be fine!”
In addition to watching videos, we tried to read books about insects.
Books are a great way to convey a message in non preachy ways. Astronaut Chris Hadfield’s The Darkest Dark is one of my favourite books that we’ve read to T as it conveyed the message out the dark in T’s room at night is nothing to be afraid of.
To be clear, T still gets creeped out by bugs… and the dark at night. We never expected nor received an overnight cure.
But over the summer, we slowly saw a calmer T around bugs. By learning more about them, he even started to find them interesting.
He became curious and less fearful and approached them to observe them… and yes, to squish them. He is a six year old after all!
Daycare staff report that he enjoys looking at ant hills when they play outside.
At home, he likes to look at the spiders and cobwebs outside our disgusting old living room windows.
Most recently this week, he became very fascinated with walking sticks, insects that look like, well, walking sticks – after they were very briefly mentioned in a bedtime story we read called, “Goodbye Summer, Hello Autumn.”
It was all he could talk about this week.
So I found a short video about walking sticks that we enjoyed together before bedtime. It was a nice way to show him just how amazing insects are, in this case, camouflaging themselves to increase their odds of surviving predators.
When I think about what is going on in the world, with spineless politicians and groups waging a disinformation campaign against COVID safety protocols and vaccines, using fear as a weapon, I can’t help but think about what our T has taught the hubby and I about facing one’s fears.
My family recently enjoyed a Chinese traditional dinner that dates back over 1,000 years.
Enjoying a meal together as a family is something we don’t do enough of.
T is a picky eater, so we make his own meal and get him fed on school nights before we eat.
Weekends, going to someone’s home or eating out present less frequent times to eat together.
I wish we could do better. But I don’t lose sleep over it, because there are many other moments we spend time together and T gets social eating moments and skills at school and daycare, so we’re not quite raising a feral cat.
The hotpot concept is simple: “a simmering metal pot with broth boils at the centre of a table and people can add and cook all the raw ingredients they like in the broth.”
The hubby and I haven’t had hotpot in years. We usually enjoy it at a restaurant but we also own a portable cooker powered by gas canisters. We purchased it in Chinatown almost 20 years ago! It’s practically a family heirloom.
Ingredient hunting was fun.
I went to the local Chinese supermarket. I don’t often shop at these stores, so it’s fun to find ingredients I normally don’t use. For starters, there’s an entire aisle just for soy sauce!
I settled on the following menu: sliced beef, imitation crab, “lobster” balls, fish balls, Napa cabbage, enoki mushrooms, fried gluten, dumplings, udon noodles.
These ingredients were packaged as hotpot ready to cook, so I had very little prep work.
It’s way more affordable to enjoy hotpot at home than at a restaurant. Let that sink in: you’re paying to cook your own food!
The broth is the foundation of hotpot. Our pot has a partition. So one half had standard chicken broth. The other half had satay (peanut) broth, using soup base from the store. Yum!
The condiments to dip the cooked food in are also important. We used what we already had at home: soy sauce, chili oil, sesame oil and chili garlic.
You mix your condiments in a bowl with a raw egg. Dipping sauce is now ready!
The cooking part was enjoyable.
As always, we threw the meat and mushrooms in first. I threw in full stalks of green onion to richen the broth.
T was curious about the hotpot. He helped add items in. We warned him to not toss items in, because this was piping hot boiling water!
You know the best part of hotpot? It forces participants to slow down and savour the moments while the food is cooking.
Once the food is cooked, you dip it into your sauce and enjoy. Then add more food into the pot.
Simplicity at its enjoyable best!
After the meat, mushrooms and gluten were finished and when the broth had built such rich flavour, we started the final act of hotpot: we added the Napa cabbage and udon noodles.
A nice bowl of flavorful veggie udon noodle soup was a nice way to end the evening.
What does your self talk sound like? How do you silence your negative internal dialogue?
“Silenzio, Bruno,” is a line from the animated film, Luca. It translates from Italian to “Be quiet, Bruno” or “Shut up.” We’re gonna go with the PG translation, thank you very much!
The two boy characters, who are a wee bit older than T, say the phrase to silence the fear and doubt in their minds during key moments.
The hubby was pleased T finally watched the film on Disney+ two weeks ago after trying to get his attention all summer.
I watched it with T, who now watches it almost daily, as he does with any movie he likes. I’m glad he’s moved on from Frozen 2 and Moana – and that characters in Luca don’t launch into annoyingly catchy songs!
What I love about Luca’s story – no spoilers – is it’s literally and figuratively about a fish out of water and provides a wise metaphor about accepting others that may be different and loving the things that make yourself unique.
The theme is universal. 2SLGBTQ+ individuals see a metaphor about coming out. Immigrants see the newcomer experience. I see a metaphor for individuals with additional needs.
I think part of that includes helping T foster a positive inner dialogue – or self talk.
This HealthLine article describes self talk as one’s internal dialogue that is influenced by one’s subconscious mind; it reveals one’s thoughts, beliefs, questions, and ideas.
Positive self talk contributes to better health, reduced stress and greater life satisfaction.
I wish to help T develop a positive inner dialogue and the skills to combat negative self talk – especially when studies show that 9 in 10 individuals with FASD will face a mental health issue in their lifetime.
I think part of that includes being very mindful about the things that we say and do in reaction to T’s behaviors.
I often feel guilty afterwards for how I sometimes unintentionally react to his challenging moments.
In those moments, I would wish right away that I did not say certain things – because I should know better that when a child hears negative words enough, these are the things they internalize and form as their self talk.
So the hubby and I do our darn best – most days are successful, some days less so – to sandwich T’s days with a positive start when he wakes up to a positive moment before bed.
We’re aware that the most challenging parts for him are when he is out in the world, navigating new routines, relationships and increased expectations at school and daycare.
Kids’ confidence soars when they feel good about themselves and that confidence is like rocket fuel that propels them through rough terrain.
We’re like that as adults too. When we feel good about ourselves, our confidence soars. Negative interactions cloudy our day with anxious self talk that distract from the bigger picture.
And that’s why I love “Silenzio, Bruno!” 2 words, 5 syllables. None of this long drawn out Shakespearean soliloquy you engage yourself in. I like efficiency.
The first week of school is in the can!
T’s teacher said he had a good first day – and the lovely postcard (above) given to each student was a wonderful gesture.
The daycare staff, on the other hand, said he had a rough start. We expected it, given he went from a group of 5 peers his age to a group of 14 kids up to twice his age.
He had challenges with respecting personal space and said some questionable words when he got frustrated with other kids that were overheard by a parent, who was not pleased.
We’re grateful for daycare staff that get it. They don’t let T get away with these moments but they are open and supportive to working with T and us. What more could we ask for?
As I drove T home that day, I was tempted to get into lecture mode. But I reminded myself quietly, “Silenzio, Bruno!”
Instead, that evening, T and I read one of our frequently-read books, Giraffe and Bird, a book about friendship.
Afterwards, I had a brief talk with T – because I only ever have a few moments of his attention – about friendship and about what he thinks contribute to good friendships, such as respecting space and using kind words.
During Friday’s daycare pickup, the staff said T had a good day. It was a really lovely way to end the week.
We went to play in the park and I showered him with praise and congratulated him on having a good end to the first week of school.
T zipped through the monkey bars, even doing an unexpectedly awesome 180 degrees-reverse turn move while dangling in the air, like an American Ninja Warrior powered by rocket fuel.
On FASD Day, I’d like to share an important lesson I continue to learn as a special needs parent.
FASD Day is observed annually on September 9 and has grown into a month-long event: FASD Month in September.
FASD stands for fetal alcohol spectrum disorder, a lifelong disability that affects the brain and body of people exposed to alcohol in the womb.
Our son T, now 6 whom we adopted at 14 months old, has confirmed prenatal alcohol exposure and currently has a prognosis of at-risk FASD.
He has yet to receive a formal diagnosis, when he’s a bit older, but we can see tell-tale signs manifested through behaviour challenges such as hyperactivity, emotional disregulation, and difficulty with focus and transitions.
Longtime readers of my blog know that T is a bright, funny, caring, determined and curious kid with a lot of potential – but he also faces day-to-day challenges that neurotypical kids often don’t.
We’ve been blessed with an amazing summer. Interestingly, September 9 is also the first day of school for T.
The coincidence with FASD Day feels somewhat symbolic. As he enters Grade 1, I am filled with a mixture of hope, optimism and anxiety.
It is a huge leap from kindergarten with a more formal learning setting and expectations. I worry how the new routines will clash with his challenges, along with gaps that may have resulted with virtual learning.
I’m choosing to stay positive. We have good supports in place and I have to remind myself about taking it one day at a time.
What’s contributing to my anxieties is the last few weeks, since the return from our wonderful roadtrip, we’ve had challenges in the mornings and evenings with routines that should be straightforward by now.
Getting him ready in the morning for daycare – getting teeth brushed, dressed – were challenging, with tantrums, battles and meltdowns. Similar situations in the evening with getting him to bed.
Even the hubby, who is normally way more patient and calm than me, lost his cool a few times.
And of course, when either one of us lose it, T enters into his fight and flight mode, and we’ve officially entered into a meltdown situation.
These explosive moments don’t feel good as a parent. You feel like you’ve let your child down and you feel guilty about how you could’ve handled the situation better.
It is a book written in concise plain language for caregivers of individuals with FASD and is considered a seminal text of wisdom. I encourage all parents on similar journeys to pick it up.
I won’t pretend to be an expert but it did teach me to reframe how I view T’s invisible disability.
First, it is to recognize that it is brain not behaviour. This is such a hard one to internalize, because we do not see the alcohol-based brain injury, we only see the behaviour.
Second, parents are encouraged to reframe a child’s difficult behaviours as “a child won’t” to “a child can’t.” I’m not sure I completely agree with this. So I like to reframe this for myself as “a child can’t… yet.”
Third, when we start viewing a child’s challenges as they are experiencing a struggle or difficulty rather than they are misbehaving, then we can reframe our response more positively as a child needs accommodation and support rather than punishment and discipline.
I know what you’re thinking. I’ve thought it too: these are such common sense and obvious advice. Let me add: it’s so obvious… in writing, that is.
Applying them is an entirely other beast. I know, because I speak from personal experience of wanting to do better and to try differently rather than harder.
But there are days when logic and determination go out the window, because we’re all human, and we often react with emotion rather than logic.
But T is my inspiration and T deserves his parents to truly try differently rather than harder.
Every day is a new opportunity to do better.
I recently put a renewed focus on my physical fitness routine. It’s been a month in and I’m feeling great and recharged.
I reflected to myself that it wasn’t easy at first, and there are evenings when I really don’t feel like driving to the gym to do 30 minutes of cardio, but I have to put in the work.
In a way, it’s like parenting. Trying differently requires you to build a new set of muscles to flex and to do so, you gotta put in the effort.
Earlier this week, determined to break the cycle of tantrum-filled mornings, I decided to try something different.
The breaking point for T is when we usually transition from getting him off the dining room table straight to the bathroom for teeth brushing.
I told T we were going to run around and play chase for 5 minutes. He loves being chased.
And so we did. He was laughing and smiling the whole time.
Then when 5 minutes ended, he went straight up to the bathroom with me – zero fuss and then afterwards, dressed himself in record time.
We repeated a similar approach during the evening, in between his tablet time and bath time, to positive results.
I certainly didn’t feel like I expended that much more effort by running around with him. It certainly felt far less taxing than losing my patience or riding out a tantrum or meltdown.
So yes, trying differently rather than harder. I love this phrase. It’s gonna be a tagline for me.
I’m gonna stumble with this repeatedly in my parenting life, but I’m sure gonna keep trying. Because it sure is easier to try differently rather than harder.
PS. I’d like to share a terrific documentary called The FASD Project. It is a short but informative and important work that helps advocate and reduce the stigma around FASD. Worth a watch.
Fire has long served as a symbol of creation, destruction and rebirth.
T’s latest song obsession is “Iconic,” from Madonna’s 2015 album “Rebel Heart.”
Every August 16, M’s birthday, we listen to her songs. This triphop autotune-laced song appeals to T, because he thinks a robot is singing.
If you try and fail, get up again.
Destiny will choose you in the end.
If you don’t make the choice,
And you don’t use your voice,
Someone else will speak for you instead.
What you want is just within your reach.
But you gotta practice what you preach.
You pay with sweat and tears,
And overcome your fears,
Never let the fire inside you leave.”
This song resonates with me, because I’ve long admired and been inspired by M’s work ethic.
Forty years into her career and past her commercial peak, she still pushes herself, against misogynistic comments about her age, experimenting with new sounds and touring techniques, instead of resting on her laurels.
What lights your flame and keeps it burning?
I think back to my 20s. I felt that my inner fire was like a set of fireworks. Huge shortlived bursts of energy, reaching for the skies, then flaming out until the next explosion.
At 21, I took a 10-hour overnight bus to New York City, from Canada, and walked into the office of a literary agency, without an appointment, and asked to speak to an agent so I could drop off my manuscript with them.
Nothing happened with it, because it was frankly not very good. I sometimes think and cringe to myself, who was that bold little kid?!
I turned 40 this year. I feel like my inner flame is now more like a tall thick candle – more reserved, silent, but nonetheless lighting a way forward for those around me.
The best thing about getting older – note that I did not say about being old! – is you know yourself better.
I know who I am and who I’m not. I’m happy and thankful for who I’ve become and the list of things that motivate me to keep trying to do better everyday is more focused and narrow.
As a parent, my inner flame also burns so thatI can help ignite the spark within my child’s spirit.
The reality of special needs parenting is that it is mentally, physically, emotionally and spiritually draining.
This is not a complaint, because being T’s Papa is the most rewarding role in my life. This is just me telling it like it is; it is very damn challenging.
While I have many things in my life that take up my time and energy, T is at the nucleus.
My flame flickers, so that I can help him find his way in his life and shine in his beautiful own way. I hope that my flame can light the spark and give him the skills and resiliency to burn brightly despite the obstacles he may face.
“I can’t. Icon. Two letter apart.
One step away from being lost in the dark.
Just shine your light like a beautiful star.
Show the world who you are.”
In the early days of parenting, the hubby and I often had conversations – and I’ve always reflected to myself – that although T is now the centre of our lives, I do not want to lose myself in the process of being a parent.
I still have my own goals and dreams, even though most of them are now deeply integrated with my hopes and dreams for T.
While I reprioritized my own goals around T, I was always mindful to not lose sight of myself.
To be able to light a way forward for T, I have to keep my own flame burning.
This is why the pandemic was so brutally hard.
Like other special needs families around the world, we were on survival mode. There was no time or energy for anything else.
Not a flame, but just a dimly flickering light bulb in a persistent brownout state.
“Tell me I’m no good and I’ll be great.
Say I have to fight and I can’t wait.”
But fire is about rebirth.
This summer has been a blessing for our family.
With daycares reopened to offer daily reprieve from T to our summer roadtrip, I do feel rejuvenated and reenergized.
With careful attention to safety precautions, I go two evenings and Sundays every week.
Thirty minutes of cardio on the elliptical followed by weights – plus three additional evenings of swim time with T – I am finally getting the physical activity I’ve missed so much.
I’ve also focused more attention into my diet, something that went out the window during the early days of the pandemic.
Smaller portions, cut out pop and juice, and stopped eating snacks in the evenings.
I started herbal alternatives to my daily second cup of coffee, alternating between bittermelon green tea and turmeric ginger “golden milk,” the latter (pictured below) of which is soothing and gives me a great night of sleep!
This past Thursday was our final evening visit to the outdoor pool for this summer, because it closes this Labour Day weekend.
It was a cool evening, you could feel autumn in the air, so T wanted to leave after just 15 minutes in the pool.
During the drive home, I remarked how quickly the summer flew by.
During a red traffic light stop, I glanced at our little boy, from the rear view mirror. He was still little, but not so little at the same time.
He is always in his element in the water, full of fiery confidence and joy.
I so wish for that flame to help him sparkle and shine in all other areas of his life.
I know and fully expect that the upcoming school year, entering grade one, is going to be a huge test for T and for us as his parents.
I’m filled with both hope and anxiety.
But all we can do is take it one day at a time.
The song “Iconic” was playing on repeat in the car and it arrived at the bridge (middle part) of the song and T sang along loudly with it.
“Born to be a superstar,
that’s exactly what you are.”
I thought to myself at that moment about how much I wish for him to internalize that message and to let it be a fuel that keeps his flame burning brightly.
Special needs parenting can be a rollercoaster and wonderful people can help along the journey.
A crucial turning point came early on for me when I recognized and acknowledged that the stress I was experiencing with the challenges of parenting a child with a prognosis of FASD did not always match my capacity to tackle them.
A week ago, a key relationship in my parenting life came to a close. The wonderful psychologist whom I had been seeing for over three years was retiring and we had our final session together.
It all began five years ago when our family doctor made a referral to Surrey Place, a wonderful organization that supports individuals with developmental disabilities and their caregivers.
He made the referral after we shared that T was prenatally exposed to alcohol. At 18 months, the developmental pediatrician at Surrey Place gave T a prognosis, not diagnosis, of at-risk FASD.
It was devastating news to receive and it took me a while to process it. But thanks to this prognosis, we received a plethora of life-enhancing services: developmental therapy, speech therapy, occupational therapy and behaviour therapy.
Another significant service was family counseling.
The developmental therapist asked early on if I was interested in their free family counseling services. She cautioned there would be a one-year wait list.
My philosophy, which I’ve adopted early on, was to take advantage of all the services we were being provided, because I knew that T would age out of these services at 6 without a diagnosis.
A year flew by and I was matched with a PHD student completing a practicum. We met once every two weeks after my work.
After she completed her practicum and left six months later, the psychologist whom served as her supervisor decided to keep me as a client.
I will forever be grateful for this, because her support the last 3+ years has truly helped me become a better parent.
Our sessions were typically an hour. It was and wasn’t what I expected a relationship with a psychologist to be.
In one sense, yes, there was a lot of talking. I talked and surprised myself with how open I was.
On the other hand, there was none of that deep analysis of my childhood or subconscious – or me breaking down in tears – that I expected thanks to how counseling is portrayed in pop culture. Not that there is anything wrong with that, just so we’re clear!
I talked a lot. We met every 3-4 weeks – and virtually during the pandemic – and I always came prepared with a list of the things that had happened with T and/or that was on my mind.
Our early conversations were less candid. It was a relationship after all and like any relationship, trust and comfort must be built first. But thankfully, they were built very quickly.
With no offense intended to the practicum student, who has a bright future ahead of her, working with the seasoned psychologist was different, because she instinctively knew, through years of experience, when to listen and when to probe and even challenge me.
She was not just someone who listened and validated my concerns but she became a trusted coach.
When T got kicked out of the Montessori program, when the public school board cancelled the specialized kindergarten program he was in, whenever I had to meet with school board staff to advocate for resource supports for T, the psychologist and I strategized and she coached me with wonderful advice from her years of experience working with families like ours.
I also want to add that many of the sessions we had together were also spent celebrating the milestones and successes that T has had. Being able to take a step back and to reflect with an objective person was also helpful in recognizing the gifts that we are blessed with.
I am very thankful that in recent years, open and frank conversations about mental health are being had and that there is a concerted effort to reduce stigma surrounding mental well-being.
I truly believe in saying that it is ok to not be ok.
In my case, being a special needs parent has changed my life profoundly – in positively rewarding and crushingly challenging ways.
Reading the experience of other parents going through their own journey has been inspiring. One common thread I repeatedly see is the feeling of stress, exhaustion, helplessness, loneliness and being misunderstood.
I’ve felt all those emotions in varying degrees.
As someone whose family has benefitted immensely from the social services available in our community – and I acknowledge this privilege, as I know that many others are not as fortunate – I can testify that there is no shame or embarrassment in asking for help.
In fact, it is essential for your survival.
Special needs parenting is a long game and I know that every day is a few more meters that I run – or stumble and fumble – in this life-long marathon.
Taking care of myself mentally, emotionally and physically and spiritually are important in allowing me to be the best parent to T, which also happens to be just one of the many hats I wear in life, along with husband, son, friend, employee and so on.
I became a better parent because of the psychologist that I had the blessing to have been matched with.
At our last session, I made sure to spend time to thank her and to tell her how much her support has meant to me and how she has made my life, and in return, T’s life, better.
For the first time in the three years that we’ve been meeting, we both teared up and got emotional.
Can you spot my cameo in this wonderful video promoting the incredible services of Surrey Place? It was taken during one of my counseling sessions before the pandemic.
I recently started reading Peter Pan with T at bedtime, his very first chapter book.
It is a modified version of JM Barrie’s classic adventure, with large text and a large illustration page on every page – to help a new chapter book reader make their way more easily through it.
We read one chapter per night. T mostly pays attention. I enjoy spending five to 10 minutes reading while he rests his head on my shoulder.
We’ve finished six of the 16 chapters. Each chapter ends of a cliffhanger, which I love, as it builds anticipation for the next evening.
For those unaware of this classic story, Peter Pan is about a boy who never grows up and tells the adventure that ensues when Peter brings three children to his home, Neverland.
As a parent of a child with a prognosis of at-risk FASD, the last five years have been an emotional rollercoaster of experiencing and learning as much as we can about FASD and what the challenges that may await T in the future.
One common characteristic that individuals with FASD may have is dysmaturity, which is when one’s chronological age does not match their developmental stage.
It was five years ago this month when we had our first meeting Surrey Place, an amazing organization that has provided our family with incredible life-enhancing supports.
When we first received T’s prognosis, one of the things that haunted me was when they advised that we will start to see the gaps widen between T and his other peers as he gets older.
Every special needs parent goes through stages of grief and for me, those words were ones that I really struggled with for a long time.
Thankfully, I’ve come to terms with that potential future for T and have chosen to channel those fears to doing the best we can to support T and to advocate for and to provide T with the early intervention supports to give him the best headstart in life possible.
I can’t predict the future and I refuse to let my fears stop me from enjoying our wonderful little boy and his fleeting childhood.
So with regards to this issue of dysmaturity, we are at a wait and see holding pattern. In many ways, T is doing great and we’re working on the areas that need support. We don’t know what the future holds and we will support and love T no matter what.
I want to clarify that dysmaturity and “Peter Pan” syndrome are two different concepts altogether – but the latter made me think about the former.
In the case of Peter Pan, I think about how the summer has just flown by. Soon, T will be starting Grade 1. Where the hell has time flown?!
I think about how temporary childhood is and how he now has two grown up teeth, with three more growing in now.
I often think about how I want to hang onto his innocence and to never lose that.
Because Peter Pan, as problematic as aspects of the story are, has one thing right: We lose things as we let go of our childhood.
The biggest loss is one’s child-like wonder for the world, the sense of infinite possibilities, and the curiosity (and time and capacity) for adventure.
I love being a grown up – but there are so many aspects of it that I can tell my younger self, if I am able to, are overrated.
We can’t fight the tide of time, including with T, but we can cultivate a mentality of keeping our inner child alive within us.
That’s why it’s so important for us to take T on adventures in nature, to be silly, and as a special needs parent, to just let go about the worries from time to time.
T has only one childhood and we want it to be one that he can look back on fondly – and hope that happy memories get him through challenges he may encounter in adolescence and adulthood.
School starts in 2.5 weeks. I feel a mixture of excitement and hope intertwined with sadness and anxiety.
I’m doing my best to park those thoughts aside. There is still a lot we want to do and to enjoy before we say goodbye to summer.
We park ourselves at the corner edge of the rope that separates the shallow and deep ends.
T likes to jump into deeper water. He enjoys sinking to the bottom and pushing himself back up. This year, he began to do front and back rolls.
T doesn’t know how to do proper swim techniques but he is very comfortable in the water. He can doggy paddle or float kick on his back from one end to the other.
Due to the pandemic, we have not enrolled him into lessons and our focus is building his confidence and comfort in the water, so he is ready for lessons when they resume.
One way we do this is to let T explore freely in the water. We stay close by but don’t micro manage every movement. T knows to, and does, ask for help when he needs – and one of us would immediately hold him up.
This week, there was a new lifeguard at the pool. He was stationed at our corner and he noticed T with his head titled up, as usual, as his arms and feet flailed, his way of treading water.
“I think you need to move to the shallow end,” he said.
I knew the lifeguard was well intentioned and was just doing his job.
I politely told him that he is doing fine and that we are keeping a watchful eye on him. The hubby added that we’ve been doing this the last two summers.
The lifeguard then added that T looked like he was struggling.
I explained to him that we would not let our child drown and this was our routine. It was my polite way of telling him to buzz off.
As we continued to swim, and later into the night, I thought about the lifeguard’s comments.
I understood and appreciated his concern, but I also balked at the idea that we shouldn’t allow kids to struggle.
“Struggle” is a trigger word for me, as I am sure it is for other special needs parents.
I often think, and have already experienced the last five years, about the ongoing struggles that T will have in his life – at school, in relationships, with future work and with self concept.
I don’t know what the future holds and every child is different, but struggle is a common thread for individuals with an invisible disability.
As a parent, the instinct is to hold them close and protect them from the negative emotions and moments associated with struggles.
But the hubby and I know that this is not helpful.
A little struggle, incrementally experienced, is good for everyone – special needs or not.
We hiked along Nigadoo Falls and found an off-the-beaten-path swim spot with a gorgeous backdrop of jagged rocks, tall evergreens, a river current and cliff jumpers.
It was a wonderful and refreshing way to spend a Friday afternoon, sharing this cozy private freshwater bowl with a dozen locals.
With his lifejacket on, T explored the area, swimming like a tenacious fish against the current to the rocky base of the falls.
Once he got up on the rocks, the hubby pointed out the water eels slithering on the slippery rocks. T got grossed out and swam out, insisting he was never coming in again.
While T played on the rocks, the hubby and I swam for what must’ve been two hours.
T eventually came back in as we knew he would. The water is always comforting for him.
I felt so grateful this slice of heaven was pretty much all ours to enjoy in this moment of time.
Earlier this week, we explored southern Tetagouche in Bathurst. We hiked downhill towards a scenic riverside area with jagged rocks.
The walk in the sweltering sun was worth it as it took us to a tiny pebbled beach with the gorgeous Tetagouche Falls just steps away.
The water was so inviting that the hubby, T and I were in soon after we arrived.
The hubby and I joined two local boys in climbing up the rocky wall next to the falls and jumping off into the deep dark water below.
What a refreshing adrenaline rush!
T was too short to climb up the jagged rocks and we pledged to take him back when he’s tall enough to climb and jump.
Instead, he busied himself by exploring the shallow river side.
We purposely did not tell him there were leeches in the water – a fat one clung onto the hubby while two baby ones clung onto my toes – because T would’ve refused to go in the water.
I enjoyed standing and watching him explore with abandon. This is what childhood summers are all about, I thought to myself.
When I was younger, just a few years older than T is now, I loved reading a book series written by Peggy Parish, best known for the Amelia Bedelia books, featuring siblings Bill, Jed and Liza.
Every summer, the siblings would stay with their grandparents in the countryside. Inevitably, they found themselves embroiled in a mystery, often set up by their family, that they had to solve.
What appealed most to me about these books were the siblings spent hours, days and weeks out in nature – at a time when there was no Internet, no mobile phones – exploring nature freely and with abandon.
We usually do the 16-hour drive over two days but we did it in one go, to avoid an overnight stay in Quebec.
T got up in a super excited mood on Saturday. We had packed the night before and we were out the door by 6:30.
T is a super trooper during long drives, an irony considering this kid can’t sit still at home or at school.
We took frequent breaks and had an unexpected lunch-time reunion at the Ontario-Quebec border with longtime friends, whom we go camping with every summer prior to the pandemic, who were also on their way to the East Coast.
An East Coast roadtrip is never complete without a stop at St Hubert, a rotisserie chicken chain in neighboring province, Quebec. It was delicious!
We arrived at my in-law’s home close to midnight local time – they are an hour ahead.
We were all delirious by that time but it was a wonderful reunion. T gave them both a big hug and it was heartwarming to see my hubby reunite with his parents after such a long time.
We slept like a log and woke up to a beautiful New Brunswick morning by the saltwater bay – and 10 days of summer vacation ahead of us.
He’d walk past behind my chair, his little head seen on my video, to take the Nintendo Switch plugged next to my desk and then plop himself on the bed behind me and start to play while I continue to chair my meeting.
I love these moments. I find them cute and his presence mostly brings calm comfort.
Unless he loses a game or encounters a particularly challenging portion of the game, that is, and then he screams with frustration.
I’ll then have to explain with a laugh to my understanding colleagues what’s happening and to reassure them that a child is not being murdered in our home.
The Switch was a gift we got for T for Christmas and I’m sticking with that story – even though I’ve been playing it just as much, if not more, as him.
I’ve enjoyed gaming my entire life and have a particular fondness for the family friendly, cleverly-designed and super fun Mario games.
When we first adopted T, I always taught how fun it would be to share the things I loved growing up with him, including video games.
It turns out we have quite the gamer in development.
At just age 6, I am amazed at how quickly he is figuring out the games and the complex controls; remember when controllers only had two buttons and not like 2 million buttons?
He loves watching gamer videos on YouTube and is undoubtedly picking up lots of tips and tricks from them.
We are currently playing Super Mario Odyssey. What I love about this game is that there is a main story you have to complete but there are also hundreds of side challenges that you complete to earn Power Moons.
T loves exploring the vast digital worlds and searching for Power Moons. I am so impressed at how quickly he finds them.
I let him play along with the specific game that I started. With T’s capable help, the two of us have found close to 500 of the 999 possible moons in the game.
This represents two months of teamwork for us, finding one Power Moon at a time – see sample walkthrough video below.
I just love the proud look on his face every time he finds one. Sometimes, he’d barge into the office while I’m on a call to tell me he’s found one.
Sometimes, we play by ourselves. But the best times are when we’re sitting next to each other, shoulders touching, and watching the other play.
T is still not very good at sharing, so often times he hogs the game.
But what I love is when he gets stuck, he is learning more to ask me for help to push through a roadblock. I think that is a wonderful new skill he learned.
T still has hilarious meltdowns when he loses or encounters a hard moment. But I keep reminding him – as video games are so great at teaching – that failure is not final. Just try again until you get it right.
He still hates losing but I do see that he’s bouncing back from those moments faster and sometimes even with a laugh or a shrug.
We do try to be mindful of his screen time consumption, as he is getting way more screen time than ever – with virtual schooling and the hubby and I generally tied up with work.
So the Switch has also provided us with a great tool to offer to T as an incentive to sit through his five daily school lessons, to participate in class and to complete his work.
If he does what we ask, he gets the Switch at the end of school. If not, tough luck.
It’s been a good incentive to get him to practice his learning on weekends too. Our goal is to do 20-30 minutes each of reading, writing and math practice during the weekend.
We sandwich these learning practices after breakfast and before the Switch, while he’s still fresh and not crabby.
This past weekend was the best one yet. He did a great job with his reading exercises, did nice writing (he’s come a long way since September) and he whizzed through the math exercise I created in record time.
So thank you Mario, Luigi, Toad and Princess for helping give us some much needed escape and family time found during these challenging pandemic days!