My Life With T

Explaining Evil to Young Kids

During our recent roadtrip, T came across dozens of shoes left behind on a set of stairs.

The stairs belonged to the Town Hall of Gananoque, where we spent a nice weekend exploring the Thousand Islands.

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.

Exploring the 1000 Islands

If a photo is worth a thousand words, a great friendship is worth a thousand memories.

The hubby, T and I went on a weekend roadtrip with a good friend, one whom I’ve known for over 25 years, since I was 14.

We went to explore the Thousand Islands in Gananoque, a three-hour drive from home.

On Friday, T woke up super excited. He had been counting down the days all week. He announced as he walked into the kitchen, “It’s the moment we’ve been waiting for!”

After breakfast, a motivated T soldiered through reading and math activities and we then headed off on our merry way.

We met up with “Auntie E,” as T calls her, at Landon Bay and set off on a two-hour hike.

The trail took us to a beautiful lookout…

… and through lots of forest…

… and more forest…

… and rustic bridges…

… and an old wrecked car that must’ve been in that forest for decades!

As usual, T was a super trooper!

Although this year, he’s been very creeped out and laser focused on bugs.

He keeps thinking everything is a bee or an earwig that will attack him.

We repeatedly reminded him that he is bigger than the bugs and so long as he doesn’t bother them, they won’t bother him.

Despite his nervous behaviour, he kept up with the grown ups and made it to the finish line!

We drove to nearby town, Kingston, to reward ourselves with dinner at Boston Pizza.

It was our first time eating indoors at a restaurant in 16 months, on the first day our province allowed indoor dining to resume.

We were all starving. I enjoyed a delicious steak and T inhaled a plate of spaghetti.

We got up very early on Saturday morning and enjoyed a three-hour kayaking tour, led by 1000 Islands Kayaking.

When we arrived on site, I kept thinking to myself, “Please don’t let me be paired up with T, please don’t let me be paired up with T…”

… And I was paired up with T!

I’m not an experienced kayaker, so I was very nervous having to fend for both of us – because as I predicted, I did all of the paddling!

But we had a blast – and I kept up with the group – despite T complaining of being cold. He enjoyed the scenery and asked good questions to the guide when we stopped at a 90-year old shipwreck.

It ended up being an intimate and enjoyable morning.

Our group totaled 9 people, including the guide. The water was calm, the overcast and cooler weather was perfect for the activity.

And the scenery was so beautiful. Tree lines and rocks as far as we could see – even spotted the USA in the near distance.

We spotted numerous blue herons along the way. I’ve never seen one in person before and they are so majestic when they take flight!

There are actually 1,264 islands in total on the Thousand Islands. The hubby, E and I gawked at and admired the million dollar homes and cottages on the shoreline and private islands.

In all, we kayaked nearly 7 km and 3 hours. T was, as always, a trooper.

The rest of our day was super relaxed, including taking an afternoon nap, exploring the local town, and having dinner on a lovely patio overlooking the water.

We slept in on Sunday and after brunch together in Kingston at a 70s style dinner, we headed our separate ways to home.

T had the Mickey Mouse pancake for brunch.

Not only was this a fun weekend, it was also the first roadtrip we had with E since 2018, our third in total with her that included T.

It felt so nice to do something adventurous with a good friend after being isolated for so long.

It was like no time had passed.

I’m very thankful to have great and lasting friendships – and amazing friends that have embraced T into our ongoing traditions, which have also included camping trips.

The world is opening up again and we’re looking forward to creating more positive memories for T, and catching up with family and friends, this summer!

The New Boy in the Park

A wonderful shortlived friendship T made was a reminder about kindness and being present.

I often think about friendships, because I’ve read it’s often a challenge for individuals with an invisible disability, such as FASD.

It was one of the hardest parts of the pandemic, knowing T was isolated at home and missing out on valuable interaction with kids his age.

About 6 weeks ago, we began our nightly routine to hang out in the playground after dinner.

It was when we met the boy, let’s call him T2, and his grandmother.

Immediately, T and T2 hit it off.

They were the same age. Both the only child. T was taller but T2 was faster and gave T a run for his money playing chase and race.

While they played, I chatted with his grandma, who was taking care of him during the week, because his parents were working; T2 lived over an hour outside the city.

She sounded like she enjoyed virtual schooling as much as I did!

The grandma and I worked together to ensure we all left the park at 7:45. When one kid had to leave, the other would follow too. No whining.

Every night, after dinner, T would be motivated to leave the house so he could play with T2.

When we got to the park, the grandma was usually sitting on the bench, while T2 was playing. When he spotted T coming, he would run quickly towards him.

It was around this time that T got motivated to give monkey bars a real try. Looking back, I think T2 may have influenced him.

As T made his way across, the grandma and T2 would cheer him on. We all cheered him.

T2 was good at learning to swing by himself, using the proper kicking motion. So he and the grandma were trying to teach T how to do it too.

About two weeks into getting to know each other, T had his massive meltdown at the playground.

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!

Patience, Perseverance, Payoff

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?”

“5.”

“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!”

“9.”

“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.

Candid Conversation: Raising Jess and Finding Hope

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 published many essays in newspapers and magazines, and each time I shared them with Mom, she would say, “you should write a book,” as if it was the first time suggesting it! How annoying!

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 mylovablepest@gmail.com.

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.

Orenda: Nature’s Invisible Energy

I recently learned the word, Orenda, a spiritual energy believed by the Iroquois to exist in natural objects.

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.

Endless Energy

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

Running like the wind at Presqu’Ile Provincial Park.

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!

I was Googling “in the storm be the calm” but typed “clam” by mistake. I think this image from Reddit still applies. Look how calm that clam is!

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!

Sliced pork ramen in delicious pork bone broth.

Transformative Energy

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.

Helping Kids Set and Achieve Goals

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!

From a math workbook we bought from Costco.

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!

There’s a very good chance we’ll get to visit T’s grandparents in the East Coast this summer. Our last visit was in 2018 (pictured above)!