The late Terry Fox took his final steps in his unfinished Marathon of Hope in Thunder Bay, Ontario.
We visited the Terry Fox monument on our first day in Thunder Bay on Monday. It honours his memory near the spot where he took his last step.
Terry Fox is a famous Canadian athlete whose right leg was amputated when was diagnosed in his late teens in 1977 with osteosarcoma. But he continued to run with an artificial leg.
He began his Marathon of Hope in 1980, determined to jog across Canada and raise $24 million for cancer research. He logged 5,373 km over 143 days before he was forced to stop from pain and because his cancer had spread to his lungs. He died nine months later at age 22.
Nearly four decades after his death, schools across Canada take part in the annual Terry Fox Run, where students raise hundreds of thousands of dollars annually in support of cancer research.
T took part in his first run last Fall and I remember smiling at the pictures of our roadrunner with a big smile.
Heroes are so important to have in life, especially for children to look up to, to be inspired by, and to draw hope from.
I think back to my childhood heroes – the Power Rangers and the X-Men were just a few who occupied my imagination.
Looking back, I always felt the X-Men resonated with me, because I drew a parallel between the persecution of mutants with being a gay teen.
And I often think: Who will be the heroes for T?
Diversity and representation are so important for children to see themselves reflected in the books they read, the shows and movies they watch and the music they listen to.
I think the Power Rangers appealed to me, because it celebrated diversity and featured Asian and Black protagonists. The 2017 Power Rangers reboot movie featured an autistic Blue Ranger.
When I survey popular culture, where are the characters with the invisible disability who are kicking ass and not those who are just inserted into the narrative as a token gesture?
Real-life heroes make big impacts too.
As an adult, I’m more inspired by real life heroes, those who’ve done something with their lives, those who’ve overcome adversity, and those who spread light to others in the world.
When we first learned about T’s prognosis of at-risk fetal alcohol syndrome, I looked for the success stories, the living examples of kids, teens and adults with FASD who are kicking butt. The reality is there are very few stories online – although these individuals, like motivational speaker Myles Himmelreich, are indeed inspiring.
One of the wonderful saving graces I found was FASD Caregivers Success, a private Facebook group with 4,000+ members that include parents and caregivers.
It was very refreshing to hear the raw stories and day-to-day experiences of people in the trenches, who share their testimonies with such truth, rawness, heart and often times, humour too.
These people are my heroes today. They give me inspiration and hope.
Every child needs and deserves a hero.
And I hope to do my part to help T find the heroes in his life – real and imaginary – who will help him dig deep into his soul and push through the hardships and the challenges.
One day during the lockdown, T said out of nowhere and completely unprompted, “Papa, you’re my hero.”
So for now, I am happy to be one of T’s heroes.
And you know what, he’s one of my heroes too.
This past Monday, as the hubby and I were enjoying the views of Lake Superior from atop the Terry Fox Monument, T initiated play with an 8-year-old.
For 20 minutes, they played chase and hide and go seek with each other and with total abandon.
I enjoyed watching them laugh and smile. And looking up at Terry Fox, I think he would approve of this child’s play too.
We were determined not to let the pandemic take away our summer tradition – the family roadtrip.
In August, we always take two weeks off to visit the hubby’s parents in New Brunswick, two provinces East of Ontario, and add a detour. This year, we hoped to visit New Hamsphire.
It goes without saying the pandemic kiboshed those plans.
So we took the opportunity to explore our province – which had recently reached Stage 3 of 3 of its reopening plans – to head north to Thunder Bay and explore detours along the way and back.
In my 30+ years living in Canada, this is my first time exploring my province in this depth.
For context, Thunder Bay is a 15-hour drive from our home – longer than to visit two provinces to the East!
We planned activities that allow us to keep to ourselves – provincial parks, hikes and swimming.
We left bright and early on Saturday and divided the drive over two days.
“We’re going on an adventure!” T said excitedly as we drove off from our driveway.
Day 1, we took a detour at Sudbury – five hours from home – and took a photo at the Big Nickel.
Then we drove another three hours north to Sault Ste Marie, our pit stop for the night.
We left the motel bright and early the next day. We had a seven-hour drive to Thunder Bay but we wanted to make a few detours.
The highlight of this day was stopping by in Wawa. There, we went off the highway and drove down a dirt road for 10 minutes until we hit Sandy Beach.
We then walked down a boardwalk that led to a narrow path with tall wild grass on either sides that led to this beautiful white sanded beach.
Would you believe we had this slice of heaven on Earth all to ourselves?!
Well, except for the first few minutes when a cute guy, with his three friends, took off his clothes down to his boxer briefs and ran into the water. The hubby and I were like, “What the hell is going on?” Good thing T wasn’t off to the side drowning, because we were a little distracted!
But soon, the guys left and my family had this gorgeous beach all to ourselves for the next hour!
T ran up and down the beach with full abandon, while the hubby walked around and I was lost in a daze soaking in the wonderful view, inhaling the fresh air and feeling the soft sand on my feet.
It was a chilly and cloudy day – 16 degrees. But the sun soon emerged. T and I decided to brave the icy water and changed to our swim clothes – we didn’t need a change room because no one was around! – and swam. The cold water woke me right up!
We then sat on a log and opened up a tube of Pringles and a bottle of Coke and shared it.
T built a few sandcastles – destroying them along the way – and then explored the empty beach some more.
We were sad to leave but we had to get on our way as we had another five hours to drive to Thunder Bay.
Near our car, the hubby found wild blueberries growing. So naturally, we had to have some. And I lived to blog about it, so they must really have been blueberries!
We had hoped to get to our motel by 7 pm but ended up arriving closer to 10 as we took a few more unplanned detours.
It has always been my wish for T to develop a love of adventure, to see the world and to be able to step outside of his comfort zone.
Our summer roadtrips – now year 5 – is one way to cultivate that spirit. I am so thankful we are able to continue that tradition this year, despite all the darkness and uncertainty in the world. I feel immense gratitude for the gift of these precious moments – especially the look of joy in T’s face and the sound of his pure glee.
I hope you enjoy the next few days of our adventures with us. The fun has just begun!
I’ve always been a positive person but parenting a child with special needs has reframed how I approach optimism into one of living life with pragmatic positive thinking.
I recently saw this tweet from educational consultant Doctor Marcia Tate on Twitter. She stated that “being positive doesn’t mean you ignore or lie to yourself about problems you face – it means you know you have the ability to overcome them! Keep the faith.” And she includes the inspirational meme below.
This resonated with me, because it puts into context the challenges the hubby and I had with T since we adopted him four years ago – how we were able to get through them and still remain hopeful.
I remember reading up so much about FASD and joining online forums and feeling this tremendous sense of grief, a loss of what I imagined parenting would be like, of what our hopes and dreams for T would be.
I am not exaggerating when I say that these services altered his trajectory. I shudder to think about where T would be today if we had not received that devastating prognosis and thus unlocked these services.
It was smooth sailing for a while. T was in Montessori and although he had ongoing challenges, the teachers were encouraging.
Then in Spring 2019, in his preschool year at age 4, we received a letter from the school administrator telling us that T would not be invited back for the junior kindergarten year. A parent had anonymously complained to the owner about T’s behaviour.
That continues to be the darkest day of our parenting journey to date. I felt the world was truly out to get T and at age 4, he was already marked for life with a scarlet letter.
I took the news so personally and it took me two weeks to calm down and act civilly with the school staff, because I acknowledged this was a decision the owner made and there was no point taking it out on them.
The hubby and I are not wealthy. So public school was the only option forward.
It was through speaking with the principal in T’s new school that we learned about the fantastic kindergarten intervention program, a specialized program with small class sizes focused on addressing behaviour challenges with the goal of integrating the child into an inclusive classroom in grade one.
I met with a review panel – and our wonderful special needs consultant from Community Living Toronto joined me – and T got a spot in the program.
Life worked out for the better after all!
The program was amazing. T was in a room with five kids and three adults – 1 teacher, 1 child and youth worker and 1 special needs assistant. I could not have asked for more.
Then a few things happened. The amazing teacher, who had been with the program since 2004, had to take a medical leave after two weeks of school because of back issues. The replacement the school found was a disaster and the classroom became so unruly.
Then last November, I learned through reading an article in the newspaper that the school board was cancelling the program after nearly 20 years! Their rationale was they were moving to an inclusive model – whereas to me, and they will never admit it, it was a thinly-veiled budget cut.
That was another dark moment in our life. I felt like we had just found even footing for T and the rug was pulled right out from under us.
I didn’t take the news well. I tried to advocate against it and reached out to the media to get the story out. I won’t share the news article or the radio spot here but if you search “kindergarten intervention program” on Google News, you’ll be able to find a December article and radio story.
Despite the article, going on a morning radio show and deputing at a school board meeting, the program was still cancelled. I knew the chances of it being reversed was slim, but it was important for me to try, to say what I had to say, and then move on knowing I’ve tried my best.
What came from the process was that the principal – who is amazing and supportive – was able to advocate and secure a child and youth worker to work with T in the senior kindergarten classroom when he started this September.
So the dust had settled and the hubby and I were finally starting to move on. The teacher came back from his medical leave in February and things were starting to get back to normal. And feel hopeful.
Then the fucking pandemic happened! I repeat, the pandemic fucking happened. I’m actually sitting here and laughing because it is so comical in hindsight how absurdly asinine our luck has been. But I can guarantee you I was not laughing back in March.
Schools had shut down and T came home and we had to homeschool him for four months.
I’ve written countless times about how challenging the four months of homeschooling during lockdown had been, so I’m not gonna regurgitate that.
I only bring up the lockdown again to say that there ended up being so many positives – specifically the gift of time with T and T getting the one-on-one academic supports he needs. Yes, even if that support was us – with valuable daily assist from his teachers.
In closing, life of raising a child with great potential and challenging needs is never easy. As cliche as it sounds, it really is like a roller coaster – up, down and upside down.
Every parent will respond to the challenges differently. But for me, I am still able to stay positive for T because of a few things.
First and foremost, my life is infinitely more fun, meaningful, richer and more rewarding because T is in it. Sure, we have hard days. But the majority of life with T is wonderful.
I’ve also learned to stay positive in a pragmatic way. Things don’t always work out the way I imagined. Actually, chances are, they will rarely work out the exact way that I imagined.
And some moments will be so hard and so devastating. But I truly believe that we are all stronger than we think. And we will get through the hard moments and become all the better parent and person because of them.
While standing first in line to be let in the outdoor pool, T tells me he’s peeing. I look down and sure enough, a puddle of pee on the pavement with 20 people looking at my 5-year-old.
I feel mortified and I could not hold in my embarrassment. “That is disgusting, why would you do that?!” I reprimand him loudly, as if that would make the situation less humiliating.
The elderly woman behind me looks at me but doesn’t say anything. It is those silent stares that kill me. You know what they are thinking especially when they don’t say it.
The pool gates open and they let us in. T, who is often clumsy, manages to find a way to trip on plain flat ground. He has a small scrape on his knee and of course, it’s like a great Shakespearean tragedy and the waterworks begin.
I’m still fuming from the pee and I pull his whiny self up and we walk over to the benches to drop off our things.
I tell him he should’ve held his pee in or told me he needed to use the potty. And as always, I feel like it’s in one ear and out the other ear with T.
To a stranger – even to family and friends – it is hard to imagine that our handsome, sweet and normal looking child has an invisible disability.
Because of this, his behaviour often illicits misunderstanding from others – like he is being a bad kid, intentionally willful, or being “weird.”
I know how other feels or think, because the hubby and I sometimes feel and think these exact same things about him.
T is too young to diagnose. He has made great gains thanks to early intervention services and he seems to hit most developmental milestones and so our developmental pediatrician wants to wait before giving him a formal assessment.
Recently, T received a diagnosis of ADHD and as such, we started him on medication. Four weeks in, it is still too early to tell what the long term effect of the medication will be.
T’s behaviour often elicits strong reaction from others. He struggles with hyperactivity, focus and emotional regulation.
He is the kid that will never stop moving and sit down to focus on a task. This creates challenges with learning at school.
He is the kid that gets angry, upset and frustrated easily. When he gets emotionally charged, it results in meltdowns, sometimes hitting his parents, and some times he would even push a chair down or start throwing toys at us.
Thankfully, through behaviour therapy services, we have developed and implemented wonderful strategies that have made a big difference. And his outbursts are now often short lived.
I think a lot about how the world will react to T. I guarantee that most people will not be as understanding as the hubby and I.
The darkest moment of parenting T to date came in Spring 2019, when we were informed by the T’s Montessori that he was not invited back to the fall school year, because a parent had complained to the owner about T’s behaviour.
Can you imagine how that felt? To have a stranger, who didn’t have the guts to talk about this to our face, play judge, jury and executioner to a 4-year-old.
We are blessed to currently have a very awesome school, principal and teacher and support services for T. Being kicked out of Montessori ended up being a great blessing!
But the hubby and I are not complacent and are prepared – while staying cautiously optimistic – for the battles ahead. Battles with teachers and administrators who don’t want to work with us – because these people will come. Other parents and kids who don’t understand his condition.
What hurts me most is how this will affect T’s self concept and self esteem, because he is a perceptive child.
Kids with special needs – especially those with an invisible disability – often have difficulties making friends. This part kills my heart the most when I think about it.
And this is why I blog. To spread awareness.
The wonderful UK-based blogger and author Andi Webb at Diary of a Gay Dad nominated me for a Sunshine Blogger Award – thank you, Andi!
And one of the questions he asked me, as part of the award process, is “Why do I blog?”
It’s quite simple – to spread awareness.
T’s brain-based disorder is never going away, as much as I pray for it to go away.
But I am not going to let that get in the way of a positive and quality life for T.
There is no point focusing on things that I can’t change but rather to invest my energy on things that I can affect:
We are only four days into return to day camp and I can say with full sincerity that this is the most normal that I have felt in four months since lockdown began.
Work is still relentless but what a breath of fresh air to be able to have a singular focus – to not be running a call with 25 people and having T have a tantrum in the background or to take a proper break instead of using breaks to homeschool.
We are also blessed that T has a fantastic day camp, the same place he goes to for his after school program during the school year.
We were forthcoming about his prognosis of at-risk FASD and they were able to secure grant funding to have a dedicated one-on-one support to work with him during the school year.
This summer, only four kids have registered in his age group. Most parents are still freaked out about COVID-19. On an entirely selfish note, this works out to T’s benefit, because the four kids have more attention and care from the two fantastic staff members.
Having T start medication for ADHD has also made a difference. I notice that T is more verbally inquisitive and can carry a conversation and thought for a longer time, like about Madonna!
It is too early to tell what the long term effect of medication will be on T when he starts full time senior kindergarten in an integrated classroom. But there is reason to be optimistic and hopeful. There always is.
During today’s pickup, the staff member told me that T told one of the the girls that he was going to kill her when they had a misunderstanding. It’s an ongoing bad habit of his when he gets angry and we are working through it.
But the staff said half an hour later, T asked the same girl if they could play together in the dramatic play area. And they ended up throwing and having a pretend birthday party together.
This is huge for T to ask and to verbalize his thoughts and a request like this. The staff member certainly thought so.
T is a work in progress and will always be one. But this is why I am so thankful day camps are back. Because the best way for him to learn these skills is through direct interaction with other kids.
My heartfelt thanks to the wonderful day camp staff who’ve carefully and thoughtfully adapted their services for these uncertain times.
In the words of the great Madge, it’s almost like we’re on a holiday from the pandemic. And yes, it can be, it can be so nice!
When we started lockdown homeschooling, the blank page of a day gave me great anxiety. I’ve since learned it’s okay to leave pockets of time during the day as unstructured time for five-year-old T to be bored.
Research has shown that boredom supports a child’s healthy development, as it helps them build creativity, resilience, and independence.
I think back to my own childhood. My parents couldn’t afford expensive summer camps, so I got stuck at home while they worked and they warned me not to let others know they left their nine-year-old at home alone.
I have fond memories of those summers of boredom. I spent hours biking around the neighbourhood lost in a fantasy world. It was also when I discovered a love for creative writing and churned out many fan and original fiction.
T is a lucky child in that he has so many resources to help him fill his day. He has TV, online games and a wealth of toys.
I think back with amusement to the first week of homeschool schedule I created in March. Every minute was programmed. Activities were chunked into 15 minute segments. I remember after the first day I had to rethink my approach because I knew I was headed towards a burnout and meltdown.
So long as we get 15 minutes each of reading, math and handwriting skills as well as ample outdoor exercise and swimming time in there, then we let T program the rest of the time.
We also try to make sure he doesn’t sit in front of the tablet playing games and watching videos too much, because I do want to limit the screentime for the sake of his emotional regulation and the effect on his eyes.
I take a deep breath when I see him wandering around the house, looking desperately bored and sad, because I know that eventually he will pick up one of his toys and start running around the house. Or he will go visit his fur siblings to torment them.
Some of my favourite parenting moments are the simplest ones. When I am working, cleaning or cooking – or when the hubby is gardening outside – and I notice T to the side, mumbling to himself and his imaginary friends. I eavesdrop on the conversations and his make believe world.
I know that it is during these moments that he is building his imagination, self sufficiency, ability to cope with being bored, and in the long run, his learning.
As T gets older, his schedule will be more programmed with extra curricular activities, like swimming lessons. I think these are equally important for a child to help them build skills and discipline – so long as it’s balanced with plenty of down time too.
But for now, I’m going to hang on to this moment of time, because I know it is fleeting, as boring as these wonderful moments may be.
On a scorching Friday morning, T and I went for a hike in our city’s beautiful Botanical Garden.
We explored nature, had a picnic of apple juice and Goldfish crackers in the shade of a willow tree, and he saw and learned about cactus plants. Oh, and he spotted a beaver up close too.
This was the first week of T’s summer break. It was also my first week of vacation all year. While it was not as work free as I had looked forward to when lockdown began in March, there were pockets of time to relax and to spend time with T.
We took a break from homeschool this week and let T just relax with tablet games. We all needed a respite from the routine and schedule for our collective mental health and wellbeing.
But we plan to keep learning happening all summer long to avoid the summer slide that often happens. More so than ever, it is important to keep T on track.
We plan to keep learning more relaxed, play based, hands on, and interactive this summer.
Reading regularly is a simple way to grow his literacy skills. Although the online resources his teacher had provided are expired, there are plenty of other online resources, like Scholastic and read-aloud videos on YouTube. Our library also now provides curbside pickup.
Practicing handwriting is something T needs to work on. His teacher gave us lots of worksheets that we made duplicate copies of. We’ll keep working on writing letters and numbers this summer.
Self directed discovery is something I want to tap into. What is T curious about? Like the other night, he was asking me if his brain slept on a bed too. I thought it was an odd question. But I made a note the next day we would learn about how the brain worked. It’s a good sign that T is genuinely curious and so I want to build on those interests.
Making stuff is fun and builds creativity and skills, whether it’s building a tower or baking a cake. Also very therapeutic.
Building social skills is something I think about a lot with T. I am thankful his day camp is open. He will be going back for two weeks in July and August. It will give him needed time away from home and to be around other kids and adults again. I can’t wait to get personal and quiet time too!
We’ve also started T on medication for ADHD.
It’s only been a week since we started the medication so it’s too early to tell what the long term benefits – or detriment, Lord help us – are.
Putting T on medication was something I struggled with but I am going into this with an open mind, for the sake of his long term outlook and ability to learn and to get along with others.
Most importantly, summer is about fun!
As a child, summer break always felt long.
Life has not fallen into a routine and rhythm. Each new grade coming up is filled with mystery.
Life does not yet feel predictable and time doesn’t seem to fly by in the blink of the eye.
So for sure we want to keep the learning going. But we also want to have fun. Especially this year, we want to have fun. And we have a few surprises planned for T.
I wish all of you a summer filled with fun, learning, wonder and time well spent with loved ones – and yourself!
Pride celebrations are different this year, but its spirit is even more relevant and important.
Pride was born out of protest 50 years ago, from communities saying enough was enough.
Activists and allies paved the way so that today, we – at least in our part of the world – can love who we want to love, marry, have families, be ourselves freely.
The past few weeks have seen global protests in support of Black Lives Matter. It has also seen aggressive counter protests.
We are headed towards another boiling point and hopefully positive lasting change and good will prevail from this necessary tension.
The photo above was from our first Pride weekend with T, who had only come into our lives for a month.
We were walking around Church Street after brunch with friends and met up with a friend’s family at a Family Pride event.
Looking at this photo, parenting seemed so much simpler when we could tie T to a stroller and shove a soother in his mouth.
I came out when I was 14 years old in Grade 9. It was both a scary and an exhilarating moment.
It took me three weeks to build up the courage to say the three words, “I am gay” to the first person I told. Then each successive outing became easier. Also, the trick is to tell someone with a big mouth and they’ll help do the job for you.
Looking back, it is so silly that people even have to come out about who they are inside.
But that’s the sad reality, especially in parts of the world where you can be punished or even killed for being gay.
As a teen, I never imagined I’d grow up one day being married and having my own family.
I am able to do so because there were people before me who helped pave the way.
Every year, I work with colleagues to organize a contingent to march in our city’s Pride parade, which is attended by over a million people.
It is both a celebration and a reminder to do our part to keep the fight alive and to never be complacent or take things for granted.
I have yet to take T marching with us. I know he will find the crowds and loud music overwhelming.
But I know he feels proud of and loved by his Papa and Daddy. I love how he reaches to hold both our hands when we walk down the street. I am so grateful for these moments.
And we will continue to teach him to love and respect himself and others and to stand up and speak up for those who are unable to do so yet.
That to me is what Pride is all about. Not just in June but every day of the year.
The hubby and I were not going to let a pandemic take away our family camping tradition, so we pitched our tent in the backyard this weekend.
It was also camping week at homeschool this week. T’s teacher gave a series of camping-themed learning activities, from books and poems, to math exercises, and more.
T went for a walk around the block with the hubby and took pictures of bugs and learned about them on an educational website.
He learned about planning skills when we worked together to create a layout of a campsite and a list of things we needed to pack for a camping trip.
The week’s activities culminated on Friday night when we set up our tent in our backyard.
T was super excited Friday morning. So so excited. He could barely contain it. And it was a wonderful incentive to use to motivate him to complete his school work.
At night, as the sun was going down and the sweltering heat subsided, the tent went up.
Camping Night 1 was not what we expected. T was so ramped up about it all day and couldn’t wind down.
Close to midnight, I called the hubby (who was still working) to take him in. Apparently he had a 30-minute long meltdown but the hubby stood his ground and did not let him come back out.
It was still a super fun evening. We read camping-related books and T explored the nooks and crannies of the tent. He poked his head out to see if there were raccoons.
But I had a great sleep outside on Friday night by myself! It got nice and cool overnight and I was snuggled in our comfy sleeping bag.
Being a horror movie fan, I did think about the possibility of someone murdering me in the middle of the night. The few hours of peace and quiet were worth being butchered for!
The birds and daylight woke me up at 4:45. I was surrounded by calming soothing chirping. Then after 10 minutes of chirping, I wanted them to STFU. I fell back asleep around 7 and the hubby called me at 8:30 to come in cuz T was up and I have the Saturday morning parenting shift.
The second night was much better. We warned T ahead of time that he had to calm down or he would not get to stay outside.
He fell asleep in no time. The hubby stayed inside because he didn’t want the entire street to hear his snoring.
I woke up around 5:30 this morning, on Fathers Day, and watched T sleep next to me. He is at his most lovable and peaceful best when he is asleep!
The furor was heated. Many people accused her of adopting the child for attention and rehoming him once she had her limelight. Numerous sponsors dropped her.
My immediate reaction was in line with the outrage choir. I thought to myself, “I would never give up on my child. How is this poor kid going to feel when he’s older?”
But then I thought back to how I felt in the moment of anger and sheer exhaustion in the early days of the pandemic.
I don’t know who this woman is, so I don’t want to make any assumptions or to project my own experience onto hers. But I do know a few things.
One, we have been very fortunate with T. No matter how hard some days have been, he is a great kid. The positives and the joy far outweigh the difficulties.
Two, taking care of a special needs child is incredibly hard.
Three, the sad cold truth is there are families who are in situations where the child’s needs are so severe they have to be rehomed or placed in special care facilities, like a group home, for everyone’s best interest.
Reading about Myka Stauffer’s story made me think of two things.
First, I don’t ever want to judge another parent – but most of us do anyway, including myself! – for the decisions that they make. Especially when I know from my reading and journey so far with T that there are many situations when a child needs to be rehomed or put in special care.
And secondly, with Fathers Day coming up, it strengthens my resolve to continue to try hard and to do better with T.
The hubby and I feel very hopeful from the trajectory he’s been on – and as we’ve heard from his doctors, his school and his supports – that things will ultimately be ok for him.
There will be a lot of hard work, sweat and tears in the days, weeks, months and years ahead – but that’s what makes life so interesting and worth living.
I hope and pray that we will never have to put T into special care one day. When I get into my awful moments of descending down a path of negative thoughts, I take a deep breath and remind myself to focus on the here and now.
I don’t know what the future will bring. But I can focus on the present and the now and how I respond to the challenges.
While watching T sleep one night and laying next to him lost in my own thoughts, I whispered to him, “I will never give up on you.”
But we are thankful that we live within minutes to many wonderful natural grounds.
We enjoyed a two-hour hike today. It was an easy hike. Flat trails. Lots of space.
We brought masks and wore them when we got close to people. But in all honesty, while there were lots of people out, there was lots of space to spread out safely and I didn’t wear mine half the time.
I enjoyed seeing T be carefree. Picking up rocks and sticks and throwing them into tall grassy fields. I loved seeing him dash ahead or stay behind while he explored his surroundings and then caught up to us when he saw us departing.
The air was fresh. I loved hearing the soothing sound of swaying tree branches and the swooshing of the dancing leaves.
There were many families and kids biking on the paved trails. I told T that next summer, he’ll be able to bike here without his training wheels if he keeps up his practicing. He’s getting so good.
There were numerous benches along the trail and we stopped periodically to sit down to munch on the snacks we prepared – Oreo cookies, gummy worms, a tall bottle of ice cold water.
It was wonderful to see the maturity in T compared to last summer. How he was able to keep up and not whine about wanting to be carried. How he peed in the bush twice – washrooms were closed. How much taller he seems in just one summer.
After the hike, we stopped by a corner store. The hubby treated us to our own ice cold sweet slushy drinks. Well earned sugary goodness!
As we drove into our neighborhood, I noticed a family of four twirling bright pink ribbon sticks in the park and next to them, a group of young boys throwing a frisbee around.
It was wonderful to forget for an afternoon that we’re still in a global pandemic – and to see people enjoying this beautiful day. Living life!
We had our own alone time in the early evening – each watching videos or browsing the Web on our devices – before the hubby fired up the BBQ to grill pork steaks I had marinated last night.
Thanks to this prognosis, we became quickly well versed in early intervention services, such as speech therapy and behaviour therapy, which have made a world of difference on his development.
We could not be more proud of how far T has come.
But T continues to struggle with a few key challenges, which became apparent during lockdown the past three months: hyperactivity, attention deficit, impulsivity, and emotional regulation.
Since his prognosis from Surrey Place, a wonderful organization that works with individuals with intellectual and development disabilities, T has been monitored by a developmental pediatrician every six months.
We had a check in with Dr L this week. In attendance were T’s teacher, principal, and behaviour therapist.
We encouraged them to speak honestly.
Everyone was in agreement about T’s tremendous progress. But everyone was forthcoming about his challenges.
Prior to the appointment, the hubby and I and T’s teacher completed a SWAN assessment separately. It’s a tool used to assess possibilities for Attention Deficit Hyperactivity Disorder (ADHD).
While ADHD and FASD are two different conditions, many FASD children receive ADHD diagnosis, because they exhibit the behaviour and associated challenges. This behaviour was blindingly obvious in T at an early age.
After the discussion, Dr L brought up whether or not the hubby and I wanted to consider medication for T.
I have been so torn about medication for several reasons.
I’m not a medical professional nor expert on medication. The following are simply my honest thoughts as I struggled and continue to struggle about this over the last four years.
I worry about the side effects I’ve read about on online forums – such as sleep issues, loss of appetite, triggering emotional issues such as rages, anxiety, depression, etc.
I worry about how medication will affect his long term health.
I worry medication will make T into a zombie and we’ll lose his special and fun personality.
T’s birth mother continues to struggle with addiction and I worry that medication will open up a gateway to drugs for him.
There’s a part of me that feels that T has made so much progress, let’s give him a fighting chance and see how he will do in senior kindergarten without medication.
Part of me feels that we’re taking the easy way out with medication, like we’re conceding defeat, raising and waving the white flag, and that we’re not even trying.
I worry a lot that we are going to fuck things up big time for T by putting him on medication.
We want what is best for T and what will help him reach his life potential.
I will always say this: T is a child with great potential and challenging needs.
He is smart and bright, so so bright. An incredibly caring person. So tenacious, determined. Funny as hell.
As his parents, we want to remove barriers for him so he can maximize his time, learning and growth – and not waste time by all the distractions that lure his mile-a-second moving mind.
This is how we’ve always moved forward – what is in his best interests.
Dr L gave us a medicine decision tool and we told him we’d get back to him soon.
The hubby has been wanting to do this for a long time. I wanted to wait.
I know where we are headed. I just have to take a deep breath and take a leap of faith.
The great thing is that this is not a one way street and point of no return.
There are options. There are opportunities to course correct.
I just need to take a deep breath and proceed as I’ve always done in life… long before T came into the picture… and certainly now with T.
Believe that things always work out the way that they should in the end.
Like many others, the horrifying murder of George Floyd weighed on my mind this week.
Since we adopted T, I often view and process news and events through the eyes of being his Papa.
I often think to myself about how I can protect T from the horrors of the world while he is young, how I can educate and prepare him to face these horrors when he’s older, and how I can ensure he contributes positive things to the world and helps combat these horrors.
I will never – thankfully – experience the inequities that black people have faced simply for the colour of their skin.
There was something enraging this past week in seeing how some politicians and individuals have reacted to peaceful protests. Those in power focused on the separate group of looters and used that to distract from or try to discredit the larger issue: a broken system that continues to allow black people to be subjected to police brutality.
Like the pandemic, I am glad that T is young and innocent and oblivious to these injustices. But unlike the pandemic, which will pass, racism is deeply rooted in our society and it’s going to take more than a vaccine to eradicate it.
I don’t have all the answers to give T nor do I even know how to talk about something like this with him should he ask me about it today (the Sesame Street video below helps a little!).
As he gets older, starts noticing differences and asks questions, I will need to be prepared.
To do that, I need to do my part to ask questions, to listen and pay attention, to speak up, to not be silent, and to better educate myself.
And the hubby and I will teach T to do the same.
Because we all can and must do our part to make things better.
The best part is T helped out. Because we are taking advantage of every opportunity during lockdown at home to turn into a learning moment – whether it’s getting him to help out in the garden or with cooking and baking.
We never have T’s attention for very long – but in the short moments that we do have him engaged, he does such a great job.
This pie was baked lovingly together with my sugary sweet little boy.
I am thankful he saw the process from the ground up – literally, seeing the rhubarb we harvested to the pie coming out of the oven. Having T appreciate hard work and see the fruits of his work is so important for us to teach him.
The hubby worked hard in the garden in the late afternoon, planting new vegetables like beans and carrots, while T ran around outside with him. I baked the pie inside and T came in to help.
While we waited for the baked pie to settle, the hubby cut T’s hair and mine and then I cut his. We’re all getting showered now before enjoying dinner and then the dessert.
This was a wonderful way to end our weekend and we look forward to seeing what other delights – and learning and bonding opportunities – will bear fruit from our garden.
It took four years and a pandemic but the Cold War between our hyperactive and loud five-year-old son and his skittish fur siblings has thawed.
T and our two cats, Kyrie and Lanaya, had a rocky start. We adopted the cats, both at 1 year old, in 2015 and T came into our lives and in our tiny condo in 2016, at 15 months old.
The two cats hated him at first sight. They found him loud and hyperactive – and stayed under our bed all day, only coming out at night or when T was in daycare/school.
Even though we’ve lived in our larger home for a year now, it is still very much an under-the-bed existence, which has increased exponentially with T and us in lockdown.
Social skills are important developmental milestones for kids with special needs.
For kids with fetal alcohol spectrum disorder, of which T has an at-risk prognosis for, being able to relate to others and understand social cues are often a challenge.
Among my worries during this pandemic is T’s lack of interaction with other children and missed opportunities to build social skills and friendship during these key developmental years. This anxiety is exacerbated when the hubby and I have busy work days and T is left to his own devices.
During moments of boredom and loneliness, T would go to our guest room and lie down on the floor at the entrance, resting his cheek on the floor so he could have a good look under the bed, where the cats would sit quietly, glancing back with apprehension at their little tyrant.
Then I had my eureka moment: the cats would teach T about social skills during the pandemic.
And so our daily routine began. Every day, T and I visited the cats every few hours. When I didn’t feel like it, he’d plead with me, “Just for one minute. It will make me happy!” How do I say no to such a heart-wrenching guilt trip like that?!
I’d lie on the floor across the length of the bed as T’s human shield – he insisted, after Kyrie hissed and swatted at him – and T would lie behind me and poke his head over to look at the cats.
Immediately, Kyrie would growl and hiss at him, while Lanaya laid next to him making nervous grunts. T would hiss back and bang the floor with his hands.
I’d repeatedly tell T to stay calm and be gentle or the cats were not going to be his friends. But my advice would be deafened by his loud hyper rebuttals.
This would go on for a few weeks. Eventually, T learned to simply peek his head over my leg quietly and to look at the cats and tell them in a soft, gentle and quiet voice, “Hello… hi guys.”
Then T learned to bribe the cats with Whiskas treats. He’d throw the treats under the bed nervously, afraid that Kyrie would charge towards him. Lanaya was a sucker for treats and she’d eat them all, including the ones for Kyrie.
T finetuned his strategy and targeted his charm offensive towards Lanaya, eventually getting her to come to retrieve a treat.
One day, she smelled T’s hand and licked it. T got so excited that he went from 0 to 60 in no time, scaring Lanaya back under the bed and breaking whatever progress he had made.
The hubby had the brilliant idea to take out the cat toys that he had put into hiding after T came into our lives: a red pointer light and a cat wand.
With T next to me, I waved the cat wand. Like instinct, Kyrie came rushing out and swatted at it. He realized T was in the room and retreated under the bed.
I then turned on the pointer light and Lanaya started swatting at the red dot until she saw T and also retreated.
While the victory with the toys was shortlived, it sparked a new angle for T to pursue. Several times a day, he would ask me to go see the cats – with the cat wand in hand. He started by sitting on the bed, trying to lure the cats out with the wand. It worked at first until the cats caught on.
Then T would lie on the floor and poke the cat wand under the bed, swatting the cats. I would get angry and tell T to stop and pay attention. “Do you not see Kyrie and Lanaya going away? That means they don’t like it.”
Every day, I would emphasize to T a few key words – because it’s important to keep instructions short and clear with kids like T: stay calm, be gentle and be patient.
The breakthrough happened last weekend.
On Saturday night, it was way past T’s bedtime and he was beyond tired. He insisted on playing with the cats. I took the cat wand away after he refused to stop poking the cats under the bed with it. He sat on the ground and cried.
Then Kyrie came out from under the bed and started meowing at him. T stopped crying. I whispered to him to stay calm and to extend his fist out – like I’ve taught him the past few weeks.
Kyrie slowly approached him and sniffed his hand and then rubbed his head across T’s palm.
T opened up his hand and proceeded to pet Kyrie on the head.
In anticipation of T revving up from 0 to 60, I told T to stay calm and be gentle. And he listened. T and Kyrie played together for a few minutes and then I told T to go to bed.
The next morning, I thought the breakthrough would be shortlived, but again, Kyrie came out from under the bed and allowed T to pet him and play with him.
And this scene repeated itself every day this past week.
Last night, the hubby, T and I were lying on T’s bed watching videos on our phones when Kyrie came in the hallway and meowed at us. We convinced him to jump on the bed and T gently petted him.
This breakthrough is such a big deal, because it teaches me that while it sometimes takes double the effort to teach T something, he can and does and will learn.
And just like you can teach a dog new tricks, you can teach our T and his fur siblings how to co-exist and to even get along with each other.
School is going to be out for a while longer, so the cats will continue to have to be T’s main source for friendship and interaction outside of the hubby and I.
There will no doubt be more twists in this saga, but I can only expect things to be mainly positive from here on out, as T matures into the wonderful caring little man I know he will become.