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!
Across Canada, citizens gathered and left shoes behind at government sites in recognition of the discovery of several hundred remains of children at the site of a former residential school.
Naturally, our curious T asked the hubby why the shoes were there.
I was curious to see how the hubby would explain a dark topic such as evil to a young child.
For me, young kids see the world in black and white and have an innocent view of the world – an innocence I want to hang onto for as long as I can, because I know it will be gone one day.
I’ve read that kids with FASD, of which T has an at risk prognosis, have a harder time with abstract concepts.
In T’s world, the concept of a hero and villain is straightforward. If you’re a Paw Patrol or Mario, you’re good. If you’re the red wall from Roblox or Hawkmoth from Miraculous, you’re a bad guy and evil. Zombies and vampires? Definitely bad.
But how do you explain to a young child the concept of the government and the Church, traditionally seen by children as forces of good, forcibly taking Indigenous children away from their families to assimilate to Canadian society – and that these children lived in poor conditions, many were abused and died, and those who survived now live with lifelong trauma?
The hubby kept his explanation high level. He explained the shoes were left to remember kids who were taken away from their families to attend a school and that these kids got very sick in the places they lived in and many of them died.
Our zombie-obsessed T then asked if the kids are now zombies.
I’m sharing T’s response not as a sign of disrespect but to convey just how innocent a child like T is and how a difficult conversation, such as the evils that society and individuals do to others, needs to be framed in an age appropriate way.
A few steps from the Town Hall was a beautiful memorial to remember the towns people who heroically fought and died in war.
The hubby kept the explanation simple again, explaining that the names on the statue were of people who had died while fighting for the country.
I didn’t think the concept of a war was something we wanted to get into too much detail too at this time either for T.
For a young child, the world is a place of wonder and amazement. While I want to hang onto T’s innocence as long as possible, I’m also aware and not naive enough to think that kids can’t handle difficult and dark topics, such as evil.
I am glad that topics such as residential schools are now being taught in schools, because I don’t remember learning about them in grade school.
I think education is one important step is helping history not repeat itself.
Another important step is doing our part to speak up.
Last Monday, T and I were playing as usual in the playground after I picked him up from daycare.
There were four boys in the park with us and I estimated them to be about 12-13 years old.
One of them encouraged the group to head towards T’s daycare entrance, where a pile of toys had been left outside.
Each boy grabbed toys in both hands and started running away from the daycare.
They came back to the playground and started laughing and chuckling. “We got new toys!” They said and were about to head home with them.
I was about to stay silent because part of me thought that they were just kids being kids. But I spoke up as they walked away from the park.
“You know that’s stealing right?” I said.
The boys stopped and looked at me.
“You need to go back and return those toys right now,” I said.
The boys just laughed at me, the old curmudgeonly man with my cane, and then threw four hullahoops and two balls to the ground.
“We’re keeping this soccer ball,” one of them said defiantly and the group ran away from me.
I picked up the toys and walked them to the daycare and called the daycare staff to explain what happened and they were appreciative and put the toys inside the building.
To be clear, I am not equating the pesky mischief of these four boys with the horrors of residential schools or war.
To me, it was important for T to see grownups role model the act of speaking up when someone is doing something wrong.
At dinner time, T and I spoke about the playground incident with the hubby and T said those boys were being bad.
For a young 6-year-old, that is a good enough step in what will be a lifelong journey of learning about the nuances of good, evil and everything in between – and doing our part to educate about and stand up for what is right.
But as I wrote in my previous post, this did not stop the grandma from letting T2 play with T nor did it deter T2 from wanting to play with T.
That was one of those moments that made my heart swell from the kindness of others and from the acceptance children possess in their hearts.
About a week or so later, there was a dad in the park flying a kite with his two children, who were a few years older than our two Ts.
T and T2 saw the kite in the air and immediately stopped what they were doing in the playground and charged into the field to chase after the kite.
They were both so excited that they bumped right into each other and fell to the ground. They quickly got up and ran again. I could’ve just died from how adorable the moment was.
The next evening, as we were walking home together – they lived on a nearby street across the street from ours – T2 did not stop on the street to wait for his grandma to cross as usual.
Instead, him and T ran together down our street towards our home.
Apparently, as T told me later, he invited T2 to come into our home but T2 rightfully said no. I told his grandma the next day what a big deal this was for T to make this gesture.
As the school year neared its end, I felt excited on one hand that the hell of virtual schooling was going to be a memory soon – but on the other hand, I felt sad knowing T’s time with T2 was coming to a close.
I am a pragmatic person and know it’s not realistic to expect these two to keep in touch with a big geographic distance between us – and also knowing T2 and T’s respective summer plans.
But I didn’t let that sad feeling get to me. Instead, I chose to enjoy the moments T and T2 had left.
During one of the last evenings, T waited for T2 at the top of the slide and they both then went down together, T2’s legs wrapped straddled around T’s waist from behind. They laughed loudly as they slid down together.
They did this a few times before we told them it was 7:45 and time to head home for bed.
I asked the grandma if I could take a photo of them going down the slide and she kindly agreed.
I’m not sharing the photo, but I’m thankful I have captured this wonderful moment in time to share with T.
I am optimistic there will be more T2s in T’s future. Sure, his challenges can get in his way at times during social situations, but I have faith in him… and in the goodness of others.
For now, day camps are open again and it is wonderful that T is with his peers again – building new memories, learning social skills, and getting to be a kid amongst kids again!
Whoever coined the phrase “patience is a virtue,” must’ve parented a child with ADHD.
We’re keeping learning going this summer on weekends. We keep it chill – a bit of language, math, writing practice, and physical activity.
Once T gets his checkmarks, he gets free time and other rewards the rest of the day.
Among our learning tools, we’re completing the Complete Canadian Curriculum: Grade 1 workbook, which covers math, language, science and social studies.
So let’s talk about worksheets – and completing them with a child diagnosed with ADHD.
Let’s take this example of a worksheet about ordering numbers from least to greatest – left page above.
I thought this would be a breeze, because T is good with numbers – and has done similar activities in class this year.
We start with question 1. “So T, what’s a smallest number in 5, 13 and 9?”
T’s immediate reaction is to start pointing to other questions on the page.
I ask him to focus on this question.
“What’s the smallest number?”
“Ok, great T. What’s the next number in order?”
He then points to the cat on the bottom right of the page and asks what the cat is doing.
“What’s the next smallest number?”
“This one?” T asks, pointing to another set of numbers in another question.
“No, 5, 13 and 6. 5 is the smallest. Which number is the next smallest number?”
“I want to get Moo Moo and Ladybug,” he says, getting up to get his stuffed animals.
He comes back and sits downs. I remind him what the question is.
I take a deep breath. Sensing my impatience, T brings his stuffed cow to my face. “Moo Moo wants to kiss you.”
“What’s the number?” I remind T of the task.
“I love you, Papa,” he says, reaching out to give me a hug.
I laugh out loud, as I hug and kiss him. “You are so frustrating sometimes. Just answer the question!”
“That’s great! And that means the largest number is…”
“13,” he says.
We make slow progress on the remaining questions, with several more tangents.
I’ll be able to collect my old age pension by the time we finish this worksheet, I thought.
T actually asks me at one point, “Is it going to be Christmas soon?”
Without skipping a beat, I replied, “It will be, at the rate we’re moving!”
This may seem comical – and to be honest, it was kinda funny – but these moments reinforce to me the challenges T will have as he enters a more structured environment in Grade 1.
The good news is I do think he understands these concepts, but getting him to focus his very busy mind is a work in progress.
It’s hard to tell on some days whether the ADHD medication we started him on last summer is making a difference. The hubby disagrees but I do notice a big difference when he’s not on it.
But we persevere in a few ways:
We try to remind him what he’s working for. Providing T with the incentives of earning checkmarks and a reward, such as time on the Nintendo Switch, makes a difference.
We try to break the task into smaller chunks. We try to remind him to focus on one question at a time. I can see why a busy two-page worksheet spread can set him off on a hundred tangents.
We play along with his quirks. If he wants Moo Moo and Ladybug to learn with him, so be it. His stuffed animals are on their way to PHDs!
We try to have a sense of humour. It is so laugh out loud frustrating sometimes when he’s so distracted, but we know he is not doing it on purpose. So we try to focus on the bigger picture: his incremental learning and growth.
Lastly, we go over the top with celebrating his completion, because he does get to the finish line and that’s the most important thing.
The payoffs motivate T. We see his proud look, his sense of accomplishment, and we see him understanding the connection between doing the work and the reward.
I hope his momentum keeps up, because it feels promising.
This past Saturday, T’s reward was a trip to the mall. We picked up glasses the hubby ordered and we went to look at glasses for T and I.
It was our first time at the mall in a year, not counting the times we went to get vaccinated.
Things are slowly opening up in our province. It almost felt normal until we saw the lineups outside each store, the limited store capacity and all the signage on the floors…
And the benches.
T smelled the sweet aroma of popcorn from Kernels and asked for a bag.
We told him that since he did a great job completing his learning work that morning, he could get a small bag of his flavour of choice.
The hubby and I rewarded ourselves bubble tea, the first time in I don’t even remember how long since we’ve ordered bubble tea from a store!
After we got home, we quickly changed into swim clothes for a late afternoon swim at the pool – a great way to burn off our sweet drinks.
Seeing T repeatedly jump into the water, with a huge smile and loud laughter, was my payoff for persevering through our day together.
It’s inspiring and comforting to connect with other parents on the special needs journey.
Vickie Rubin is the author of Vickie’s Views, a heartwarming and inspiring blog about raising her daughter Jess. Vickie has a background in early childhood education and special education. This month, she releases her memoir Raising Jess: A Story of Hope.
When Vickie reached out about writing a guest post on my blog, I asked her to take part in my first “Candid Conversation” post – to have a parent to parent chat – and she kindly agreed!
Thank you for reaching out, Vickie. Please tell us about your daughter, Jess.
How to describe Jessica succinctly, hmm. Jess is 39 and was diagnosed with a chromosome deletion 1Q-44 when she was 21. Before that and the development of more sophisticated tests, she had what we called “Jessica Syndrome.”
Jess loves her family, friends, and music. She is usually the bright light in the room. Her smile is pure joy, as is her greeting of screams when she sees a familiar face. Jess lets you know without any words that you are loved and appreciated. She has taught me way more than I have taught her.
Congrats on your memoir! What inspired you to write this book?
Ever since I can remember, my Mom said, “You should write a book.” My response was repeatedly, “I am raising three kids, one who requires total assistance with everything.” The answer eventually included, “How can I write a book; I am working full time?” Usually said with only the annoyance a daughter can muster! And yet, she persisted.
I retired in December 2016, and my kids bought me an old school dictionary, thesaurus, and journal and said start writing.
Newly unemployed and with time on my hands, I decided to do it! Every day for three years, I wrote. The result was the book “Raising Jess: A Story of Hope,” due out July 2021.
Writer David Wade once said in the London Times that “experience needs distance and what you write of at a distance tells not so much of what you were like as what you have discovered since.”
Unfortunately, as I was writing my book, my mother was diagnosed with Alzheimer’s. After all the years, I finally did what she asked! And I loved every minute of it. Regretfully, it was too late to talk in-depth with Mom about the chapters and process.
I’m very sorry about your mom, but I am glad that you got to fulfill her wish.
I’m on an earlier part of the special needs journey and as you know, “special needs” is such a broad and complex spectrum. One common thread I’ve observed about parents on this journey is the concept of loss and grief.
What is your advice for parents who may be experiencing loss and grief?
My career focused on working with young families of children with “special needs.” I know the essay Welcome to Holland can be considered corny, but it also resonated with me.
I think families need to acknowledge that the child they dreamed of is different than their expectations. But different doesn’t mean bad. It’s ok to feel loss and grief. But, then you embrace your child, who is different from anyone you imagined, and build a new dream together.
Many families make the mistake of isolating themselves from friends, especially those with similar age children, and family. From the beginning, we remained close with our friends and found a wealth of support and love. I often hear now that Jessica’s same-age peers are amazing advocates because “when they were growing up, they knew a girl…”
My Mom always felt bad for me and was unable to overcome her grief, so that she could genuinely enjoy Jess. Parents may find that their parents are grieving for their grandchild as well as their child.
Support groups – the right ones and not the bitchy-complaining ones – were beneficial for us.
What a great attitude, Vickie! I loved the “Welcome to Holland” essay. Thank you for sharing!
On the flip side, I love that parents such as yourself are using platforms such as blogs and social media to celebrate, advocate and showcase successes. What have been your most proudest moments in your journey with Jess?
For my book, I asked my kids and family that question, and everyone came up with the same reply, Jessica’s Bat Mitzvah.
This is a clip from my husband Mitch’s speech to Jessica: “This day is so meaningful to our family, an evening where Jessica is celebrated and honored for being a Bat Mitzvah as any other Jewish girl of thirteen. We have come a long way as a family and a community to have total acceptance. It’s not easy; it is many times a great effort, but the outcome of inclusion, acceptance, honor, and love is worth the effort.”
Watching how Jessica’s siblings embraced Jessica and did not feel slighted because of all the care Jessica needed. They believed they could do everything they wanted as a child; it just took longer to get there!
Walking Jessica across the stage for her high school graduation and Jessica winning the Principal Award: The principal for her school invited Jess and our family to a gathering of all graduating students who were winning awards.
The last award was for Jess and the principal said, “This student overcomes hardships every day of her life.” He spoke of the student’s courage and enthusiasm for school. He went on to say that although this student has many challenges every single day, she still comes to school with joy and a smile and brings that joy to all those around her. “This award goes to Jessica Rubin!”
Thank you for sharing that. I know other parents and youth reading this will feel inspired!
I’m fascinated by the writing process, especially when it’s so personal. How did you decide which moments to highlight in your book?
I think this is one of the reasons it took me so long to start the book. I kept imagining a textbook – which overwhelmed me to no end.
I also imagined a book that started on Day One, we did this etc. But then I read the memoir The Diving Bell and The Butterfly, written in essays, and I knew I found my writing style. I had already been writing essays to our local newspapers, similar to my blogs, which is my writing style.
The Book Raising Jess: A Story of Hope is written in essay form and covers highlights of our life. It talks about the challenges of caring for our daughter with disabilities to marriage struggles and the question of having more children. The book gives a glimpse into the world of our family and transformation while Raising Jess.
That’s an interesting and pragmatic approach! And your blog is certainly a collection of even more essays.
You recently wrote a touching post about turning lemons into lemonades during the pandemic. As a parent, I feel that adaptability is a quality required to get through the challenges. Where do you draw your inspiration from to turn your lemons into lemonade?
Jess inspires me. She has so many reasons and barriers that would prevent her from experiencing joy in life, yet she appreciates delight more than most. I also think letting go of comparing to peers; it’s so tempting yet so damaging.
Follow your journey. It’s ok. We are all different, and we can all learn from each other.
I had a call the other day from a peer of my youngest daughter. His friend has a baby that will most likely have significant disabilities. He asked me to speak with the parents and told me all he learned from watching Jess grow up. Jessica’s legacy is so far-reaching; she has touched so many people in positive ways. I find that truly inspiring.
Thank you, Vickie, for sharing your story. I’m glad that we met through the blogging community. I’m so moved by your and Jess’ story and look forward to picking up your book. Best wishes with your launch this summer!
About “Candid Conversations”
If you’re interested in taking part in a “Candid Conversation,” my blog’s version of a guest post, please reach out at firstname.lastname@example.org.
Please note: I don’t accept monetary compensation or promotional “freebies” and I am selective about the content that I share. The intention for these conversations is to amplify inspiring stories and important information – and not to market/promote products.
We can all learn so much from each other and do our part to support each other – and I look forward to hearing and sharing your stories.
Lately, I’ve been listening to the music of Ferry Corsten. His uplifting songs resonate with me during these challenging times.
T is familiar with electronic trance music or as he calls them: songs with no words. For a while, Martin Garrix’s Animals was T’s repeat request.
To me, trance epitomizes the power of music. Stripped of words, melodies and rhythm form a universal language that connects with listeners.
Corsten’s latest song, Orenda, has his signature joyful melody, spiritual themes and masterful build towards an emotional climax. As always, the sonic journey feels transcendent.
I was curious what Orenda meant. I thought it was related to astronomy and I was enlightened when I learned its beautiful meaning.
With each repeat listen – the song is on heavy rotation – I reflected on the words energy and nature and the ways they appear in our lives.
As most parents of a child with FASD will tell you, the child’s endless energy is exhausting.
Neighbours often remark about how T is super energetic. I now understand why there are wheels in hamster cages.
I’m slowly reframing how I view T’s hyperactivity. Rather than see it as a negative, the hubby and I try to find productive ways to refocus that energy – to help him better manage daily life.
Like other kids in similar situations, sports provide T with a healthy outlet to burn energy.
Now that summer is here, outdoor pools are a lifesaver. I love watching T’s confidence and ability grow with each visit.
Nature’s Healing Energy
Nature provides so much respite during this pandemic. Whether it is a Spring walk as nature reawakens from winter, a long summer hike, or a fall colours excursion, our bodies re-energize from the healing outdoors.
I’m thankful T has gained an appreciation for the outdoors and that he looks forward to and enjoys our simple rewarding family outings.
I believe that T finds freedom with nature. In these vast spaces, he runs as fast and far as he wants, splashes water as hard and loud as he wants, and can be himself with abandon.
Collisions of Energy
I’ve written about T’s explosive moments. He’s making great gains in learning to regulate his emotions; it’s a work in progress.
One of the best lessons I’ve learned from other parents on similar journeys is to be the calm in a child’s storm. Responding to an explosive moment with an explosive reaction is counter productive.
I know, this is such obvious common sense advice. But it took me a long time to figure this out. I still have challenges with staying calm in T’s storms, but I am a work in progress too!
Renewal of Energy
Energy is finite – and self care is an important part of my survival strategy to parenting T.
After a gruelling three months of virtual schooling while working full time, I took the last week off to recharge. Bonus: his daycare reopened on Wednesday!
This past Friday, I had my first day to myself with zero responsibilities in forever.
I sat down on a patio – for the first time in over a year – and enjoyed a delicious bowl of tonkotsu ramen and an ice cold can of Coke while soaking up the sun and feeling a cool breeze. All by myself and boy was it rejuvenating!
Storms are said to possess orenda. This tidbit resonated with me when I first read the definition, but I wasn’t sure why.
Shortly after I arrived home from lunch on Friday, dark clouds that were promised all day finally appeared and soon enough, thunder and lightning ripped through the quiet sky and heavy rain poured across the city.
After the storm, I looked out our window at the hubby’s garden. He has been working so hard at it and it looks wonderful. I told him that he doesn’t need to water the plants and that they were going to bloom further after the downpour.
That was when it clicked why the word orenda resonated with me.
As we weather T’s stormy moments, like plants under dark skies, we too are inevitably transformed and grow through the energy of the storm.
One recent win we had was helping T set daily goals that positively impacted virtual schooling.
T’s Child and Youth Worker was motivated – as were we – to get him to participate more in class.
Depending on which camp you fall on, you may find token charts useful or eye rolling in shaping behaviour of kids with special needs.
For us, they are mostly effective tools; although, it has yet to help with T’s ongoing challenges with using the potty, but that’s another rant!
T’s CYW created a simple chart: he had to participate four times each school day to earn his Switch at the end of the school day.
The system worked like a charm. We saw a kid who was hesitant to participate – sometimes having explosive rage meltdowns when we asked him to – to a kid who was motivated and even felt good about sharing his thoughts.
As we started to see this slow positive change, I thought about other ways we could use goal setting in T’s day-to-day life.
It is very important to me that T develops a good work ethic. I am mindful there will be challenges as a result of his prognosis, but I refuse to let it limit him from reaching his potential.
I am aware that despite the best efforts of his teachers, kids will generally be behind because of the setbacks from the pandemic.
The hubby and I are using weekends to keep the learning happening with T.
We don’t overdo it, because we all need to have fun and rest too: 20-30 minutes of reading and a little bit of math and writing practice.
We work on it first thing in the day, while we’re all fresh and T is at his peak and less grumpy self.
We also remind him what he’s working for: time with the Switch or tablet, as well as swim time at the outdoor pool.
And miraculously, T is often agreeable and the meltdowns have been minimal – when we make it clear to him what he’s working towards.
T’s writing has come a long way. He is now using a pencil instead of a crayon. He still needs to press harder, so his writing is not so faint. But what a difference in terms of legibility.
Reading is a work in progress for T.
I asked T’s teacher if she’d be willing to lend us a summer’s supply of books that we can work on with T. These books are simple and short with repetitive structure and a focus on sight words.
Thankfully, she agreed and I pledged to reimburse any book that we lose or damage. This is going to make a world of difference in helping T avoid the summer slide.
I will say, the hubby and I are especially proud of how far T has come with math.
We have read that individuals with FASD often struggle with math. So far, knock on wood, T has been doing well.
He recently started to do one digit addition and subtraction and blew us away when he seems to be able to doing the calculations in his head (he does get very upset when he gets the answer wrong, so we’re working on teaching him it’s ok to make mistakes). Let’s hope this keeps up!
We try hard to be consistent with showing T what happens when he doesn’t put in the work.
We’ve had several days when he didn’t fully participate. So while we didn’t make him feel bad about having an off day, we followed through by not giving him his Switch.
The resulting tantrums tested our patience but we stuck with it. Somehow, I think T understood why he didn’t get his Switch.
If I seem like I’m showing off a pony, I guess maybe because I am! But really, it’s more because I’m so proud of how far this kid has come.
Parenting T comes with soul-draining challenges – and still does! So when we find something that works, we really take the time to celebrate and relish the moment.
While we don’t use exact words like “setting goals” with him, we try to show him through actions what we expect from him.
Most importantly, we try to have fun at the end of each day as a reward for T and ourselves. Fun in the pool, family hikes in nature, McDonald’s Happy Meals, ice cream sandwiches, free time with the Switch and tablet, and so on.
Speaking of goal setting, summer is here! Our main goal is to relax and have fun. May it feel like a long dragged out summer in the best of ways!
Two years of growth, unexpected challenges, laughter and tears culminated in a virtual kindergarten graduation.
I can’t thank T’s teachers enough for hosting a virtual ceremony this morning during the pandemic to celebrate this important milestone.
They provided in advance a graduation kit – diploma, cardboard hat, fun sunglasses – to have ready for this morning’s bash.
T’s teachers opened with touching remarks then highlighted each child with a photo and remarks. Then she played three videos filled with uplifting messages, including a read-a-loud of Doctor Seuss’ “Oh, The Places You Will Go.”
In the absence of a live audience at home, I lined up T’s stuffed animals around our tablet.
At the start of the ceremony, T was being his silly self with Moo Moo. The hubby tried to calm him down, which then escalated into a tantrum.
T stormed off from the table – I quickly turned off our camera – and marched to his room. He slammed his door and screamed and cried.
I thought how this moment nicely encapsulated our struggles during virtual schooling.
But a short minute later, T calmed down, came downstairs and rejoined the ceremony.
To me, this moment perfectly captured the huge growth we’ve seen in T these last few months with regulating his emotions, sitting down in the class, and actively participating.
Yes, it was a constant struggle and required a lot of work and patience – on our part, T’s teachers’ part and T’s part – so I couldn’t think of a sweeter way than to end our kindergarten journey on this high note.
I’d like to look back at T’s kindergarten years and give thanks to the blessings and the challenges that brought us to this very moment in time.
I’d like to first thank the Kindergarten Intervention Program that T had the blessing to be a part of in his junior kindergarten year.
After a disappointing end to his Montessori pre-school years – when he was not invited back to the school after a parent complained about his behaviour – T got into a specialized kindergarten intervention program at the public school board that had a small class size and specialized staff to support behavioural challenges.
It was, therefore, devastating to find out – from reading an article in the newspaper! – that the school board decided to cancel the program; because we were seeing first hand the positive impact the program had on T.
I’d like to next thank the school administrative staff – including T’s Principal, Superintendent, board staff and trustees – who listened to us when we raised our concerns, including through a deputation I made at a board meeting.
Thanks to their openness, T received a one-on-one Child and Youth Worker in senior kindergarten, when he was integrated into a regular classroom.
I’d like to thank the pandemic for bringing our family closer.
I can’t describe in words how exhausting and hard the last year has been with having to juggle full time work and virtual schooling/parenting a special needs child – in addition to unexpected events like my mom’s stroke.
But we made it and the hubby, T and I are closer and stronger thanks to this adversity.
I’d like to thank the amazing social services staff who supported T the last two years, from his amazing daycare staff and the Special Needs Resource Consultant that worked with the daycare, to the amazing developmental pediatrician, family psychologist and behaviour therapist at Surrey Place.
It truly takes a village and we’re so lucky to have a great village.
I’d like to thank T’s teachers, who were true heroes.
I don’t think people realize how insane it is to virtual school young kindergarteners!
They were so organized, creative and thoughtful in how they structured the class and how they adapted along the way to make it a smooth and rewarding experience for everyone.
I’d like to thank T’s amazing Child and Youth Worker.
She worked so hard to adapt to T’s strengths, challenges, and the pandemic.
She implemented many strategies to help him succeed, like one-on-ones, virtual scavenger hunts, and a token chart. They all contributed to T’s ability to now sit down, complete his work, participate and believe in himself.
But the hubby and I save our biggest thanks for our lovable little pest.
I think back to a year ago and even just six months ago.
He has come a long way with learning to better regulate his emotions, after explosive moments.
The biggest way we see this is how he gets up and storms off into his room. This may seem horrifying to most parents, but to us, this is him proactively finding a space to cool off. Sure, there’s screaming fits and crying, but he is able to calm down quickly now and rejoin the activity.
And get this, he’s even come up and said sorry after one of his moments.
This is huge.
Thanks to the persistence and patience of his teachers – and us parents too! – he mostly sat down through virtual class in the last three months.
Sure, he still fidgets, gets silly and restless, and sometimes gets up and wanders off – but I’m focusing on the many more moments he sat through a session.
The biggest gain that I was so happy with was his active participation in class.
His CYW implemented a token system where T had to work for his Nintendo Switch at the end of the school day. To do this, he had to participate at least 4 times during each school day.
It worked like a charm and on this second-to-last school day, T was the most active participant in his class.
I wish T could see and know just how bright and capable he is. But we will work on that. Life is a work in progress after all.
Most of all, I am so thankful for all that this kid teaches us – about resilience, adapting when things go off the rails, living in the moment, and focusing on the big picture.
The hubby and I are so proud of how T is ending his kindergarten journey and how he’s grown academically and socially. We’re so thankful for his teachers, CYW and all the supports on Team T.
And now, it’s time for rest and relaxation.
We’re gonna enjoy this moment and focus on having a super fun summer. Grade 1 can wait. We know the ups and downs will continue, but we are ready for it.
I came out at 14. I remember how nervous I was and how it took me three weeks to work up the nerve to tell the first person I came out to.
I was very fortunate to have received mostly supportive responses. When I didn’t, I am glad I had the wisdom to walk away.
When I told the pastor of the church that I was attending that I was gay, she suggested that I go see a psychologist.
I was 16 and didn’t have the boldness to tell her how angry and hurt her reaction made me feel. I stopped going to church and knew that organized religion was not for me. Today, I don’t need a church to feel a connection to God.
Both the positives and negatives of the coming out experience shaped my formative teen years and influenced how I perceive, respond and adapt to challenging situations as an adult.
I see parallels between my own coming out with now coming out as a special needs parent.
In the early days, I worried a lot about how others would react.
Not because I felt ashamed, but because I did not want a four letter prognosis, FASD, to become a negative label or stigma for our T and to affect how others treat him.
But like my own coming out, it became easier with every step – and I quickly found support in family, friends, colleagues and professionals.
When I came out in my teens, the Internet was new. I am fortunate that today there are so many online resources and communities to help the hubby and I navigate this journey.
Perhaps the most important lesson that I learned from my own coming out was the importance of advocacy.
The hubby and I have embraced this ethos for T and are very grateful to have met so many allies through the school system and the medical and social services communities.
The irony, though, is that while many people know about T’s prognosis, he has yet to know about his condition.
I think a lot about how the hubby and I will have this conversation with him one day.
He is now 6 and we want to wait until he is a little older for two reasons: a) he is still young and b) he doesn’t have a diagnosis yet and is doing well so far with the supports we have in place.
I don’t quite know the words that I will use but I know that I will take a direct but compassionate approach.
I will make it clear that this was nothing that he did or was responsible for.
But the most important message that he needs to hear and to understand is that he is perfect the way he is.
There is nothing wrong with him, nothing to be ashamed of and whatever challenges he is facing because of his medical condition, we will continue to support and work together with him to face and to overcome them.
I can’t control how he will react. I sometimes worry about how this knowledge of his condition will shape his self concept.
But I do genuinely feel hopeful. Despite ongoing challenges and regular struggles, T continues to surprise us all with his awesomeness.
And like the rainbow that has been embraced as a symbol for LGBTQ2S+ inclusion, I feel hopeful there will always be something wonderful at the end of every stormy moment.
Monkey bars provided a magical moment when T’s “I can’t” became “I can.”
We see for ourselves that while T has a challenging prognosis of at risk FASD, he has so many great qualities. Among them, he is kind, caring, funny, bright and persevering.
But we also see, and notice more, things like anxiety, self consciousness and hesitation.
As an adult, I see and understand now how confidence often plays an important role in allowing others to excel and propel forward.
The hubby and I are mindful with helping T build an inner confidence – as well as perseverance and a willingness to take risks – that can help him navigate challenging moments.
I always think about and wish for T to develop a positive inner voice at an early age, because I am mindful that as he gets older, he will encounter those who’ll chip away at that inner voice. It’s a given; I’m not a pessimist, I’m just a realist.
I will say that some of the challenges related to his prognosis that manifest themselves through his behaviour can often make it difficult to champion this positive message.
Some days it is hard to push the message of you can do it, when I’m clearly impatient or irritated, because he’s driving me crazy.
But thankfully, for our family, the good days far outweigh the challenging ones – and I will never take that for granted.
So back to the monkey bars…
I still remember the first time T showed interest in monkey bars was around age 3.
He’d just hang on a single bar and then drop himself to the ground. Or he would ask the hubby or I to hold him as he grabbed each bar and let us carry him from one end to the other.
Last summer, he decided he would scale across and he did it in one go. Just like that. I was so impressed.
But then he never did it again – and approached them with hesitation. I’d ask him, “Why don’t you try again? You were able to do it before.”
His answer would be, “I can’t! I want you to carry me!”
When T indirectly broke my tablet’s power adapter, he said non-chalantly, “Just get a new one.”
“And where do you think the money is going to come from?” I asked him.
Without flinching, he said, “I’ll open the pig’s bum,” referring to his piggy bank.
Yes, a power adapter wasn’t super expensive. But it did highlight T’s lack of awareness about the value of things.
In fairness, he’s 6 and he has the rest of his life to figure out money, work, and all that.
But it’s important to me that T learns at an early age to value things, to know that things are earned, and to not be wasteful.
At an early age, my parents told me to finish every grain of rice on my plate, because farmers work hard to harvest a single grain of rice. They cautioned that every grain not eaten meant one pimple on our future spouse’s face.
For individuals with FASD, the concept of money is a difficult one to learn, even at adulthood.
Thankfully, about two weeks ago, he made a new friend, a six-year-old from outside of the City who is staying with his Grandma during the week, who is helping him with virtual schooling.
The two of them have been playing very well. Now that the days are getting longer, it’s been nice to take T outside to play. Let him run ragged, so he can go to bed faster is how I look at it.
The nuclear meltdown happened last Thursday.
As with these unexpected moments, it came out of nowhere.
T wanted to be pushed on the swing. As he often does, he asked in a loud demanding way.
I told him to ask nicely or I was not going to push him.
Out came the grumpy T. “Shut up,” he said.
I reminded him to use nice words.
“Do you want me to slap you?” He said.
Planned ignoring from me.
So he upped the ante. “Do you want me to punch you?”
I gave him one last warning to talk nicely or we were going to go home.
So he got off the swing and shoved the swing towards me.
I said softly to the Grandma of T’s new friend. “I’m sorry, but we’re going home now.”
The thing with managing T’s behaviour is that you have to follow through with your warnings.
So T erupted like a volcano.
Loud screaming, crying, fell to the floor. If you only heard what was going on without any visual cues, you’d think a child was being murdered.
I picked him up, this kid that was now half my height, and carried him kicking and protesting out of the park – defeaning screams and all.
It was the longest three minute walk home.
I felt the heavy gaze of every parent and child in the park. I felt like eyes were looking out the windows of homes on the street.
When I got home, I dropped T to the ground. I was trembling and my voice was shaking.
I told him how embarrassing his behaviour was – and I told the hubby to take over, because I was done with him for the day.
As a special needs parent, you learn to live through these moments. But they are nonetheless draining.
It ruined my long weekend; I had taken Friday off work as a mental health day and to take T out for a hike after school.
I spent the day in my room with myself. I did the bare minimum with T that day, because I was so upset.
But beyond the anger and embarrassment, what I really felt and was having a hard time processing was the sadness.
It was a sobering reminder that despite the many positive and amazing gains T had made, there is always this specter of his prognosis.
Specifically, it reminded me of the lifelong struggles he will likely have.
One of my big emotional triggers is around the worry of how T’s behavioral challenges will impact his social life as he progresses through childhood, adolescence and adulthood.
He is a very bright, funny, caring and sweet boy. This is the majority of our experience. But all it takes is a moment like this to tarnish his impression on others.
I find this the hardest part to cope with.
To put it frankly, this was an incredibly deflating experience.
We always try to teach T that if you fall down, get up and try again.
That really is what special needs parenting is all about – whether we like it or not!
And that’s what the hubby and I did – after about three days of my pure grumpiness.
I told the hubby I don’t think I could face the Grandma. She probably wouldn’t want her grandchild to play with T again.
But we had to try. Because we can’t live our lives in constant fear of judgment or looking like we’re screwing up in public.
Yesterday night, we took T out. We had a very good day in school and were optimistic we were not going to have a repeat episode.
T and the boy played so well together and even included another girl in their game.
The Grandma asked if he’s feeling better. I told her about T’s prognosis and background.
Being a retired high school teacher, she knew about FASD. She then disclosed one of her other grandchildren has autism and she shared her experience with supporting him.
Then she added that she thought the hubby and I were doing a great job.
I know she was trying to be kind, as she’s only just met us, but it was nonetheless such a reassuring thing to hear.
We walked home together afterwards with T running far ahead of us.
She asked me if he was going to be ok.
I joked that if someone abducted T from the streets, they’d be paying me to take him back.
This evening was a wonderful reminder that there are no coincidences in life and that we were meant to have the moments that we have – even these explosive embarrassing moments – and you meet the people you’re supposed to meet, like this Grandma and her grandson.
It was also a good reminder to always exercise kindness with yourself.
As T got out of his bath that evening, I wrapped his towel around him and I gave him a big long tight hug.
And I finally let go and felt the heaviness of the past few days fall off my shoulders.