My Life With T

Challenging Conversations with Kids: On Death

During bedtime two weeks ago, T asked me, “Papa, are you old?”

“I’m older than you. Why do you ask?” I replied.

“When you get old, will you die?” He asked.

I was caught so off guard. My gut reaction was, “Are you kidding me? It’s past your bedtime. I am so tired. And I just want to go to bed.”

But of course, I did not say that. I paused and collected my thoughts.

“Why do you ask?” I asked. I was concerned. It seemed like such a dark and heavy topic for our usual happy-go-lucky boy.

I tried to remember if he had watched something on TV and I wondered if he may have heard a story from school that upset him.

“Are you gonna die when you get old?” He asked again.

I am a straightforward person – sometimes too direct – and I believe that it’s important to be honest with T and to normalize difficult subject topics, like death.

But I will say that I struggled with this answer. “We’re all going to die one day. But life has a beginning, middle and an end.”

“What happens when you die? Will I die one day too?” T asked.

“We all die one day,” I said and repeated that life has a beginning, middle and an end.

“Will I die soon?” He asked.

“I hope not!” I said. “You’re a young boy. You have a long life ahead of you.”

“I don’t want Papa and Daddy to die. Or I’m going to be alone,” he said and then started to cry.

I was able to reassure him that we are going to be here for a while and that he has nothing to worry about. I can’t guarantee that obviously, but let’s be positive here! But he fell asleep peacefully.

I was bummed after the chat – not only because it was such a dark topic, but I wish I could’ve answered his questions better.

I texted a good friend who has two young girls and she said, “Oh my God, I fucking hate the death talk!” I had quite the laugh and felt better about my own reaction.

So I read up about how to have this difficult conversation with kids, including this insightful Fatherly.com article, and I spoke about it with the wonderful child psychologist who has been supporting our family the last two years.

I kept these useful tips in mind for the subsequent times T brought up the topic – thankfully not too often since!

Be truthful and factual – When T asked me again why people die, I reiterated that life has a beginning, middle and an end and that death is a normal part of life. Things in nature like plants and animals also die. The best advice I read was to keep it factual when asked what happens when you die: “Your heart stops.”

Avoid euphemisms – Don’t say things like “You go to sleep forever” because kids will develop a fear of falling asleep. I will admit I laughed when I read that. Also avoid saying things like “They go away to a better place” because the child may think they’ve been abandoned.

Only answer what they ask – Our child psychologist says this is a heavy topic and is a lot for a child to process, so keep the response to what they ask and need to know.

Tell them you plan to be around for a long time – When T asked me again if I’m old and if I will die soon, I told him that I’m older than him but I am still young and that the hubby and I plan to live until we are 100. T knows that is a big number and I could tell that he felt comforted.

Didn’t use religious symbols – I know many families use religious symbolism as a means of comforting children (e.g. Grandpa is now in heaven). Religion is something we are not introducing to T at this point. But it’s certainly something that can help comfort children and I respect that.

Now that I’ve had distance and reflection about this, I feel better. I’m not overly concerned at this point that T has brought up this topic. It seems like an age appropriate thing to ask.

In some strange way, I find it interesting that T is thinking about such deeper topics. It shows me that things are moving and maturing in that little head of his.

Hopefully this topic doesn’t consume too much of his thoughts. And if it does, we’re ready to hear him out and to respond in a way that hopefully reframes it in a positive and reassuring way.

Enjoying A Last Burst of Summer

We took advantage of an unusually warm weekend and soaked up the sun and outdoors.

The weather forecast gave me the will to get through what felt like a long week and it looked even better as the weekend came upon us!

Early November is an interesting time as Autumn gives us one last burst of its radiant colours.

If we’re lucky, we get a last burst or two of t-shirt and shorts weather before the chill settles in – and warm weather we got this weekend!

On Saturday, we went for an afternoon family hike with T at the Scarborough Bluffs.

I had been there three weeks ago on my own but it was nice to bring T back as it has been at least two years since we’ve brought him here.

We first checked out the marina and the very cool houseboats. I can only imagine how calming it must be to live not just live by the the water but on it too!

Then we made our way to the beach.

As we walked, the hubby reminded me that the last outing we did before T came into our lives was a Spring hike on a Saturday afternoon in April 2016 at the Bluffs.

Little did we know that four days later, we would get an unexpected call from our social worker that we had been matched with T!

T is always in his element in nature, because it is wide open and he can run and be carefree.

Sand? Lots and lots of sand? Even better!

It was nice watching the hubby and T have fun together.

It’s always fun to let T and his curiosity lead the way.

On the walk back to the car, the hubby spotted a big floating dead fish. So naturally, T wanted to take a closer look and throw rocks at it.

It was almost 5 pm when we got to the car and the sun was setting.

We were all starving and the hubby and I were craving Taco Bell.

T, who is a stubbornly fussy eater, said he wanted to try a soft chicken taco. He had never expressed any interest in tacos before, so we quickly jumped at the opportunity.

And he loved it! So it’s now something we can add to the handful of things he will eat! Fast food be damned, there’s meat and vegetables in the taco, so more tacos are in his future!

We enjoyed the tacos with a gorgeous cotton candy sunset outside our dining room window.

Earlier this Sunday morning, T and I went back for more nature fun at the Bluffs.

We both got up fairly early and after breakfast, he said he wanted to go back.

The weather was so beautiful and felt so fleeting that I didn’t second guess my impulse to jump on the offer, as tired and unwashed as I was!

T found an abandoned dig site at the beach and quickly claimed it as his own.

And he dug and dug and dug.

As a kid with sensory seeking behaviour, this was a type of calming activity he thrives in and enjoys.

I switched back and forth from watching him and blankly staring down the long path of the beach and enjoying the soothing sound of the water.

After an hour, he got bored and we walked the winding path of the beach’s edge, skirting the water coming and in out of the beach.

On the way back, we took the narrow and wooded path away from the water.

I had never explored this path before and only stumbled upon it by accident today, because I had to take T to pee in the bushes.

I was sure glad we found it as it gave another perspective on this beautiful place.

As always, I let T lead the way. He wanted to follow a small creek because he was curious where the water originated from.

We kept walking down the path and discovered wonderful close up views of the jagged Bluffs and cliffs.

T kept himself entertained with natural artifacts he found and picked up along the path.

Nature is a go-to place for me to recharge.

Things always feel calmer, clearer and more collected after time spent outdoors with sun, sand and water. And today was no different.

I’m glad we can continue to share this love with T and the hubby and I hope that it will be a way for T to recharge himself as he gets older.

Summers fly, winters walk.

I’m thankful we got to enjoy this last burst of summer.

While we are always wanting more of it, this weekend was a nice way to celebrate if this was indeed the last of this weather for the year.

Creating an Individualized Education Plan for Our Kindergartner

Last Friday, we were notified by T’s child and youth worker that a parent had complained to the teacher, specifically about T not giving a classmate personal space.

I read this entry in her daily log entry late Saturday evening after experiencing the high of a wonderful Halloween celebration with T.

It bummed me out, as I recalled unpleasant memories of T’s Montessori pre-school and when the board booted him out after a parent complained about his behaviour to the owner.

Thankfully, things are different at his new school – a public school – because we have a wonderful team of advocates, including his principal, teachers and child and youth worker.

Part of this support includes the development and implementation of an Individualized Education Plan (IEP).

As described by our school board, an IEP is “a written plan that describes special education programs and/or services for a student. It is based on a student’s profile of strengths and needs.”

According to the US Department of Education, “the IEP creates an opportunity for teachers, parents, school administrators, related services personnel, and students (when appropriate) to work together to improve educational results for children with disabilities.”

The school offered us the option to participate in the development of the IEP and we gladly accepted. The school asked who else we wanted to be consulted and we asked for T’s behavioural therapist to be included, because she has valuable insights from working with T.

During the consultation with T’s teacher, child and youth worker, and principal, we talked about T’s strengths, areas of needs and our goals for him.

We identified the following as T’s strengths:

Visual learner
Hands-On learner
Independence on preferred tasks
Gross motor skills
Rote learner
Motivation through special interests

We identified the following as T’s areas of need:

Behaviour management
Self regulation
Transitions
Social skills
Communication
Attention and focus
Fine motor skills

We conveyed our goals in two broad categories:

Academic – e.g. building pre-reading, pre-math, handwriting skills
Social – As outlined in the list of areas of need above

T’s teacher provided us the draft IEP for review end of last week and it nicely captured what we discussed.

An IEP also outlines the school’s goals for T, along with the teaching strategies and their assessment method to gauge T’s progress.

I like that each goal is realistic and measurable. For example, “T will improve his ability to follow class rules without adult support at least 60% of the time.”

We were pleased with the IEP and signed off on it. We look forward to checking in on T’s progress with his teacher throughout the year.

I’ve read stories of special needs parents who have found it to be a struggle to get an IEP or for it to be developed and implemented.

So we consider ourselves to be blessed to have amazing people on Team T, as we affectionately refer to them as.

We are also thankful for T’s amazing child and youth worker.

We only have her support this year, so we hope for T to get as much mileage from her one-on-one support as possible. And we are already seeing a difference and growth in him.

She uses a daily log book to document and to provide us with updates on T’s progress.

She lists three daily goals for T and she reports how he does with them; a check mark for when he meets these goals at the various daily activities and an X for when he doesn’t meet them.

The hubby and I appreciate her concise, clear and honest feedback. I like that she doesn’t downplay T’s challenging moments, as it doesn’t do anyone, especially T, any good.

What we feel especially thankful for is that she is a champion for T. She addresses his challenging behaviour, but she also celebrates his daily victories and she sees the big picture – which is all about the incremental gains.

When we reached out to her about the parent who complained to T, she was reassuring in her response and kept us focused on the larger picture. Really, we couldn’t ask for more.

If it’s anything the last few years of school has taught us is that it will be a winding road with T.

But we remind ourselves that we are covering new ground every day – no matter how incremental – and leaving a paved road of lessons learned and mostly positive memories behind us.

There is always a reason to stay the course and look ahead with optimism.

And with T’s IEP, we have an additional tool – a roadmap – for the school year ahead.

Creating A Haunted House Scavenger Hunt

Halloween is very different this year but we wanted to make sure we celebrated one of T’s favourite days.

So we created a surprise Sugary Scavenger Hunt around the house, including turning our family room into a haunted surprise.

The fake cobwebs and spiders blended in nicely with the real ones!

As soon as it turned dark outside, we began our hunt.

Chocolates and candy were placed all over the house and T had a flashlight in one hand and a bucket in the other as he explored the house with the hubby and I.

On a regular day, our 50+ year old fixer upper home looks like someone got murdered in it. So it wasn’t hard to make it spooky for Halloween. I mean, missing kitchen cupboard doors, hello!

Our wonderful neighbour gifted T a basket of treats which we put as the final surprise – next to a spooky white lady skull with glowing red eyes – in our basement crawl space.

T bravely – kinda – crawled under to retrieve his bounty.

T knew something was up all day because we were working on it but he didn’t know the details other than he had to wait until it got dark outside.

I took him for a late afternoon walk so the hubby could finish the final details of our surprise.

After the scavenger hunt, T told us in the most heartfelt way, “Thank you for decorating the house. I really appreciated it. I love Halloween.”

And he gave us both a big long hug and told us, “I love my parents.”

It was one of the rare handful of times that he expressed such a genuine and so well articulated outpouring of love.

And it was honestly all the sugary sweetness we needed to hear during these trying times!

Connecting with Special Needs Parents at the Playground

I believe the universe conspires to bring people together – and the recent gathering place is a playground.

One of my favourite parts of my day is when I pick T up from his after school program. We spend an hour hanging out at the playground.

Since July, he’s built friendships with a regular group of kids, including learning about the reciprocity of play from two older kids.

In more recent weeks, since school started, other faces have come into the mix.

One regular group is a mother and her two boys, aged 7 and 5. The younger boy is T’s age but is a fair bit shorter. The older boy, as the mother was quick to share, is autistic.

T and the younger boy have come to play very well together. I enjoy watching them chase each other and laugh together.

I get amused when they get annoyed at each other for not sharing the rocking horse. Or when the boy hits T. To be frank, it’s nice to see T get a dose of his medicine!

While T and the boy play, the older brother is off on his own exploring the park. The mother and I take the time to chat.

I’ve been forthcoming about T’s special needs, about his at-risk FASD prognosis. I’m also open about his adoption. In turn, the mother shares her own challenges and learnings with raising a boy with autism.

Going for a walk at the Port Union Waterfront this past weekend.

There have also been other special needs parents in the playground – although I’ve only seen them all once so far.

A few weeks ago, T was playing with the older kids when two other older siblings – Grades 1 and 3 – asked to join them.

As they played, I sat on a park bench and started to chat up these siblings’ mother.

She was quick to point out that both her children have learning disabilities. I, in turn, shared T’s story. She then said that she adopted both children and is a single mom and that she also thinks her kids may have FASD although the birth mother denied drinking during pregnancy.

It was at that moment that I remember a conversation with the school principal when we were registering T for the after school program.

I asked the principal if he had any experience with kids with FASD and he spoke about a sibling pair.

I had no doubt that I was speaking with the mother of said sibling pair.

It was so refreshing to talk openly with another parent who understands the nuance and the complexity of your own parenting experience.

She spoke about her children’s difficulties with school, her experience with medicating her two children, and her challenges as a single parent.

It was sobering to hear her story, because it made me realize that while the hubby and I had our challenges, we have it fairly good in comparison.

That was the first and only time that I saw that mother. I hope to see her again one day.

Speaking with these two mothers made me realize one common characteristic of special needs parents – and I see this in myself – how quick we are to explain our children’s behaviour to others, almost as if we feel self conscious or need to rationalize them.

I observed this in another young couple I saw at the playground about three weeks ago.

They were with their two young toddler boys. T was circling around the older one, making his dinosaur noises, and the boy started shouting loud noises back at T.

I laughed and told T, “Don’t make such loud noises. You’re going to scare the boy.”

Then the dad said with a laugh, “My son also has autism.”

That comment kind of caught me off guard but I appreciated his candor. I didn’t react or try to correct his assumption about T but just went along with it.

I shared these stories with the mother of two boys who I see regularly.

I joked that the playground is almost like an unofficial special needs parents conference and she said all of us parents are just trying to burn our children’s energy before bedtime.

And she has a point!

This past Thursday, we had an unexpected visitor at the playground: a beautiful fox.

All the kids got excited and started chasing this poor fox.

I had to be the boring parent and run interference when they cornered it and started stepping closer to the wild animal.

All the commotion and running was not for naught: T passed out fairly quickly that evening!

Finding Fitness and Wellbeing In Lockdown

The days are getting shorter and I think even more about wellness as we look ahead to the pandemic winter ahead.

A recent poll reported that 1 in 4 Canadians reported their mental health is worse now than in the first wave of the pandemic.

One thing I’ve missed a lot during this pandemic is the gym. It was my go-to wellness activity and I went 2-3 times a week during my lunch break.

But alas, if it’s anything the pandemic has taught us, it’s that we must do our best to adapt.

I always say that I‘m no good to anyone – my spouse, colleagues and most especially, our dear T – if I‘m not as close to my 100% as possible.

So I always make time for my personal wellbeing as this is so important, but often a challenge, to do as a special needs parent.

Here are a few ways I am making time and space for fitness and wellness during this pandemic.

Beautiful fall colours during a recent walk.

Daily walks with hubby

The hubby and I are in a very privileged spot to get to work from home. It’s not without challenges, but we’re grateful to be employed.

When T went back to school, the hubby and I started walking breaks from work. We use this time to explore new parts of the neighbourhood while dreaming about the future.

Afterschool Playtime

T would love to explore this train bridge area at Highland Creek Trail.

One of my favourite times of the day – other than when T is in bed – is picking him up from daycare.

We spend an hour at the playground. It’s one of my happy times. It helps me unwind from work and helps T burn off his excess energy.

Running around after him certainly gives me good cardio!

Investing in Home Gym Gear

This door is going to fall down on my face one day.

I regret pitching my dumbbells when we moved. It’s impossible to find them now and they cost a fortune in the resale market.

I recently invested in these high quality and still economical resistance band set from HomeProGym. They will never replace the gym but they are giving me a more-than-decent resistance training fix while gyms are closed.

Nature Walks

Going for outdoor and nature hikes with T is one of my favourite things to do.

I also make time to go on walks by myself, even just around the block. It helps me clear my head.

The pandemic has motivated me to explore local trails. The photos throughout this post were from a solitary walk last week to explore the scenic and calming Port Union Waterfront and Highland Creek trails in Toronto.

Eat Well

A scenic spot at Port Union Waterfront where I enjoyed a cheese danish.

Like most people, I’ve put on the COVID-19. It’s hard to keep the weight off when you’re eating 8 meals and 10 snacks a day working at home.

But generally, the hubby, T and I eat nutritious and balanced meals and also ensure we get additional vitamins and supplements as needed.

We really want T – who is a fussy eater (that’s another post) – to develop good eating habits.

Sleep Lots

I strive for 8-9 hours of sleep a night and I am thankful I mostly get that.

I know as a special needs parent, this is often the exception rather than the norm!

And complex problems seemingly become less complicated after a good night sleep!

Disconnect

Walking and hopping along the rocky perimeter of Port Union Waterfront.

I keep up with the news so that I am informed but I avoid “doom scrolling” and obsessively reading up on the pandemic.

I like to focus on things I can control and try not to expend energy on things beyond my control.

I know these are challenging times. I really consider my family so blessed in the grand scheme. So I focus on this as I help T continue to develop and grow during this pandemic.

What are your strategies for fitness and wellness during lockdown? Whatever you are doing, stay well and take good care!

Preparing For A Return to Homeschooling in Lockdown

Creating hands-on learning tools, restocking supplies and reconfiguring our kindergartner’s learning space were things I prepared for a potential return to lockdown homeschooling.

I took the past week off work to recharge. While I spent most of it relaxing, I also used the free time for homeschool prep.

COVID cases are at a record high. Our government wants to keep schools open but we are aware that another lockdown is a possibility.

T has already spent seven days at home in October and it caught the hubby and I off guard.

I don’t like being unprepared, so I spent the past rainy Thursday inside at home prepping for another homeschooling in lockdown scenario.

I thought about what the hubby and I learned from our 4-month experience in Spring, about our goals for T, and about what we anticipate would be T’s areas of greatest need.

Reconfiguring the Learning and Play Spaces

The dining room is our command centre, where the hubby and I work and where T is set up to learn.

You can imagine what a zoo it can be.

On Thursday, the hubby and I moved our cabinet from storage next to our dining table.

This will allow us to keep the table tidy. We learned from Spring that if a space is cluttered, it reduces T’s ability to focus on the task at hand.

We kept the wall to display T’s completed work up in our living room. He takes pride in seeing his work on the wall so we didn’t take it down this summer in case we needed it again this year.

We are not bothering to furnish the living room until we renovate the main floor, hopefully next summer.

In the meantime, the space is a blank canvas for T to play in and for us to initiate pretend play, like camping, restaurant or treasure hunt.

Restocking Supplies

The dollar store is great for homeschooling.

For about $20, I got the essentials: crayons, markers, construction paper, child-friendly scissors, glue sticks, poster board, sticky notes and a small dry erase whiteboard.

We also reuse things like plastic fruit cup and yogurt containers for craft supplies.

I got this awesome Flip Chart (20 sheets per pad) on a foldable cardboard easel from Amazon which is a great tool for learning.

And stickers, lots of stickers. These are great incentives for T to finish an activity.

Organizing Learning Activities

I reviewed the activities we had stockpiled from last Spring and reorganized them, including worksheets from T’s previous teacher.

The hubby and I also bought a few awesome activity books which cover math, sight words and creative thinking.

Strategizing with his Teachers

We are blessed to have an amazing school that is so supportive of T.

He has a fantastic child and youth worker working with him one-on-one as he transitions into an integrated classroom.

The hubby and I met with her last week to discuss how we would work together if there is another lockdown or when T has to stay home.

We agreed that 30-minute daily check ins would be great and the child and youth worker has lots of great ideas for virtual learning.

I set up a shared Google Doc to plan our daily schedules and to stockpile future activity ideas.

T’s teacher also set up a Google Classroom and provided daily activities for parents to work on with kids when they have to stay home.

The class recently got together for daily one-hour group lessons during the 14 days they had to quarantine – which T thankfully got to avoid.

It is comforting to have this all in place because T needs the interaction with kids and teachers.

Creating Learning Tools to Address Areas of Need

As we discussed with his teachers on a call last week to develop his Individualized Education Plan, we want T to work on handwriting, building his pre-reading skills and math.

For kids with T’s prognosis – at-risk FASD – fine motor skills like handwriting, reading and especially math are often identified as skills where they fall behind in during later years, so we want to help him get a headstart now.

I’ve read – and I’ve certainly observed this in T – that kids with FASD tend to be visual hands-on learners.

So with $5 worth of supplies, I created this large size and reusable Ten Frame tool to help teach T how to do simple addition and subtraction using popsicle sticks and sticky notes.

I also created an alphabet chart to help him learn about consonants and vowels and a hundred chart to help with counting.

Embracing Digital Learning

T has basically taken over my personal tablet.

T’s teachers have provided fantastic play-based learning websites and apps.

T also likes the literacy and math activities on IXL, which aligns with curriculum. So it’s worth the low cost of membership.

Following T’s Interests

Doing a scavenger hunt and having to read clues to find a treasure hidden in the house.

I’m not a teacher – although I wanted to be one in another life – and I’m not a homeschool expert.

But I know that kids – and adults too – learn best when they are having fun.

So while there are certain things that are mandatory for T to learn – like the alphabet, sight words and counting – we want to take his lead and let his interests guide his learning.

He likes dinosaurs? We look up a video on YouTube about how dinosaurs went extinct or learn about what fossils are.

He likes pirates? We create a scavenger hunt that encouraged him to read clues to find a treasure hidden somewhere in the house.

It’s a lot of fun to see him have fun and makes the trouble of creating these activities so worth it.

Incorporating Behaviour Modification Strategies

We’ve been blessed to have worked with an amazing behaviour therapist from Surrey Place Centre the last two years who have provided us with effective strategies to deal with T’s learning-related challenges, which include hyperactivity, difficulty focusing on a task or transitions, and emotional regulation.

I’ll write in detail about our experience with behaviour therapy in a future post. For homeschool prep, I thought about the challenges we had with T in the Spring and how we’d deal with them differently this school year.

Using a visual timer (pictured above) given to us by Surrey Place and giving T ample warning before the next task has helped with transitions.

Giving him a set time to complete an activity also helps him build his ability – and gives him an incentive – to stay focused on a task.

His behaviour therapist and teacher last year introduced us to the token economy to incentivize positive behaviors. I created one using ice cream popsicles as the visual cue.

As effective as it can be, a token board is a lot of work to administer, in my opinion, so we’ll only use this if a lockdown does indeed happen – rather than for one-off days of homeschooling.

I also still have to create a visual schedule tool to help T learn to organize his day as kids like T benefit from having structure and routine.

I hope to never have to use any of this for homeschool

As happy and prepared as I feel after having done this work, I hope and pray we never have to homeschool in lockdown ever again.

The thought of it makes me want to slit my wrists.

But all this work is not for naught.

I do plan to use these tools on the weekends as I think having even 30 minutes of learning on Saturdays and Sundays will help T keep up with his academics, which is so important for his long term growth.

And we will make sure to have fun along the way!

Taking Time Off To Recharge

Every year, I take the short work week after Thanksgiving off as “me time.” This year, I was practically crawling towards it.

As with everyone who is trying to just get through these challenging pandemic times, my 2020 batteries have been burnt to a crisp.

One doesn’t realize how exhausted they are until they have personal quiet time to do nothing.

I had time off with family in the summer and we enjoyed a wonderful roadtrip. But I also had to check into work throughout that vacation.

My goal for this week was no work and just a focus on me, myself and I.

Yesterday, I went for a scenic morning walk at the Scarborough Bluffs, this wonderful nature oasis within the City that is 20 minutes from home.

I parked at the furthest lot and enjoyed a long walk to the beach, passing by the marina.

The Bluffs are always packed on weekends and parking is a nightmare. But on a weekday, it was deserted and parking was free!

Nothing like solar energy, the calming sound of waves and fresh air to rejuvenate oneself.

It was nice to walk the entire stretch of the almost-empty beach, my first time doing so in 31 years of living here.

I reached the pebbled beach on the other end and thought to myself how much T would enjoy picking up the rocks and throwing them into the water.

And then I felt thankful that he was in school so I could enjoy this moment to myself!

The autumn weather was perfect.

I love that I squeezed another t-shirt and shorts day in. I wish this weather could last a bit longer… like until next Spring!

I did a headcount and there were less than 20 people on this vast beach. Mostly older adults and retirees out on a walk. A few adorable dogs. And a woman and her adorable toddler grandson.

After over an hour on the beach, I walked back to the car and headed home. I still had an entire afternoon to myself to just relax.

Parenting, special needs child or not, is exhausting.

This year presented additional challenges, like homeschooling while working, and really tested the hubby and I physically, mentally and emotionally.

That‘s why self care is so important, because I am no use to T if I’m burnt out.

I’m thankful I have the opportunities to take the time off to recharge.

Realistically, I know that we are only about halfway past this pandemic marathon and so it was good to get this break to recharge so that I am ready for the next stretch ahead of us.

And for me, nature is always the magic ingredient to refreshing myself.

I hope everyone is also taking good care and hanging in there!

Giving Kids Chores and Building Their Confidence

While I was preparing to take out the recycling bin to the garage, T chirpily asked to help.

It was overflowing in the pantry and I helped him pull the bin out; a mountain of plastic and boxes spilled onto the kitchen floor.

T insisted on carrying the box down the hallway, out the door and down the stairs into the garage. I guided him from behind.

We came back and I patiently watched him pick up the clutter from the kitchen floor and place them into the bin.

The hubby and I gave each other surprised looks. “T, this is amazing. You are doing such a great job!” I said with genuine praise. I could tell he felt proud.

I watched him with amusement. Has he gone stir crazy being home half the week?

Yes, he was home again for two days last week. A teacher tested positive for COVID. Thankfully, because T was not exposed to him the week prior when he was home with a cold, he got to back to school last Friday. And hopefully the teacher will be ok.

Back in the garage, T insisted on lifting the second filling of the recycling box over his shoulder to dump the contents into the larger bin.

After we returned inside, T washed his hands and the hubby and I gave him a big hug and showered him with praise.

Giving kids chores helps teach them discipline, life skills and how to work as a team.

Yes, our 50+ year old kitchen is disgusting. We hope to renovate it in the near future!

One thing I’ve repeatedly read about kids with FASD, of which T has an at risk prognosis, is they often like to be helpful and can be hardworking.

These are qualities we want to build in T from a young age, because we want to maximize his chances to live independently without us one day.

I think that giving kids jobs around the house helps them build confidence.

When they have a sense of ownership over something, it can help them build their self esteem.

I shared this update with T’s child and youth worker, who has been working closely with him in the classroom.

She was delighted to hear this. She noted that T is often reserved and does not yet participate in group activities. She thinks it has to do with self confidence.

I can see where she is coming from. Although T is confident and outgoing at home, he was not around other kids for five months during lockdown and last year, he was in a class with only 4 kids. So this year is quite a change.

We are meeting with his child and youth worker this week to discuss strategies to help T come out of his shell. I know that he will if given the right supports.

So the hubby, T and I agreed that there are certain jobs in the home that are T’s to look after.

Emptying the recycling bin is one of them now.

This weekend, I asked T to help clean the table after meals, in particularly his own space by emptying waste in the organic bin and putting his dishes in the sink.

Before we pretend played this weekend, I asked T to tidy up the living room, which looked like a bomb had gone off and left debris of Hot Wheels scattered across the floor.

I stepped away for a few minutes to go to the bathroom and when I returned, T had tidied up the space quite nicely.

I was impressed and gave him a big hug.

Down the road, the hubby and I think about getting a part time job for T. We both started paper routes when we were 9 years old and it’s something we could see us doing with T.

This recent post from Love That Max about a mom advocating for a job placement for her 17-year-old son really resonated with me.

Kids, special needs or not, all want to feel valuable. Jobs at home, school or in the real world, help us all build confidence and worth.

We want to help T to see in himself how awesome and amazing his parents think he is.

Mind you, our living room looked like a disaster again an hour after T cleaned it up. But that’s ok. Childhood is meant to be messy, so long as T cleans up again afterwards!

Family Day Trip to Enjoy the Beauty of Fall

It’s Canadian Thanksgiving weekend and our family enjoyed a scenic Saturday afternoon outing in nature.

We had planned to leave the house by 9 to maximize our day. T and I woke up at 10 and the hubby an hour later. By the time we left the house, it was Noon.

But long weekends are meant to be relaxed!

We drove two hours East of the City to a charming town called Campbellford where he made a quick stop to take a photo with a giant Twoonie.

Then we hiked at the small but beautiful Ferris Provincial Park.

Fall colours were not quite in full burst but there were enough yellows, oranges and reds on the trees and ground that made it feel magical.

The highlight of the park was the metal suspension bridge that overlooked a gorge.

We stopped by for baked goods at the well-known Dooher’s Bakery in Campbellford.

Then we did a beautiful drive through country roads to the town of Brighton, as T enjoyed shortbread cookies and blueberries.

I was driving so I didn’t snap any photos. Just enjoyed the majesty of Fall.

In Brighton, we visited Presqu’Ile Provincial Park, which is French for “Almost an Island.”

We walked through this beautiful white sandy path to the big beach.

It was nearing sunset so the beach was almost abandoned.

It was super windy and cloudy so the waves were extra busy and loud.

We enjoyed listening to the calming sound of the waves while T sprinted up and down the beach.

This was a totally unexpected slice of heaven and it was hard to believe this was only 90 minutes from home. We made a note to come back for a longer visit and swim next summer!

It is family tradition to do a short roadtrip during Thanksgiving weekend.

I love that we have these traditions and that T looks forward to them. I am thankful he is now gung-ho for the long drives, that he embraces the adventure of hikes and that he treasures these moments in his memories and brings them up in conversation later.

In 2016, the hubby, T and I, along with a dear friend who happens to be a foodie, did a two-night poutine and falls colours visit to Quebec.

We ate five poutines – a Canadian tradition of fries with cheese curds and gravy on top – in 36 hours, including a fancy foie gras poutine sold at a food stand on a duck farm.

I didn’t think I could eat another French fry for months after that weekend!

Thanksgiving Roadtrip 2016 – Foie Gras Poutine from a duck farm in Quebec, quite possibly the fanciest poutine I’ve ever had!

In 2018, the four of us did another food-themed and fall colors Thanksgiving roadtrip weekend – this time through Vermont and Maine for seafood, like lobster, fried clams, and chowder.

Thanksgiving Roadtrip 2018 – Lobster roll and clams from The Clam Shack food stand in Maine.

The drive back to Ontario, Canada through New Hamsphire was absolutely breathtaking – as captured through the photos at the top of this post and below. Just stunning.

Although this year’s Thanksgiving was local, we had all the important ingredients: nature, fall colours, comfort food and quality relaxing time spent with family!

While we were looking forward to enjoying our daytrip with a small group of friends, we had to keep it just our family as the government had reintroduced restrictions on social gatherings to combat rising COVID cases.

On the drive home, the hubby assembled sandwiches with bread rolls, sliced honey ham and marbled cheese slices that I had prepped.

A content and tired T told us sweetly, “I love you Papa and Daddy.”

Finding Conflict and Resolution at the Playground

On a recent Thursday daycare pickup, I got out of the car and heard yelling between T and a little girl.

At first, I thought they were just playing but upon a closer look, I saw the two of them screaming at each other’s face, a parent standing behind the girl and the daycare staff behind T.

T saw me and ran to me. He wanted to leave but I was not going to leave without finding out what was going on.

We walked over. “Is everything ok?” I asked.

“No, it’s actually not,” said the mother.

T had thrown grass at the 4 year old girl’s face and the girl then hit T back in retaliation and that set off the screaming match.

So I asked T to apologize. He was reluctant to do so and the girl apologized first.

He apologized quietly and I made him repeat himself so that everyone could hear.

Once he did, I let him go and play in the playground while I spoke with the staff.

She said that T is very hands on with the kids and still has a hard time with understanding when kids just want to be left alone.

She mentioned that because of his behaviour, one of the parents had asked for T and their child to be kept separated.

Well, that just bummed me out. It kept me up that night as I thought about it. It’s always hard to see this kind of feedback about T no matter how thick skinned I feel I’ve become over the years.

But one thing parenting T has taught me is that every day is a new day and a clean slate.

The next day, when I got out of the car, I expected there be another screaming match.

I heard excited shouting and in the distance I saw T holding a ball away from the girl.

Here we go again, I thought.

But they were running around excitedly and playing nicely with each other.

The staff, a different one from the day before, said that the two of them actually like to play with each other.

I took T to the playground, where we usually play for another hour before heading home.

The girl arrived five minutes later with her mom.

While the two kids played excitedly with each other, I spoke with the mom. I apologized again for T’s behaviour and she, in turn, apologized for her daughter’s behaviour.

I told the mother that I spoke with T about his behaviour and told him about keeping his hands to himself, no hitting when upset and most certainly, no throwing things at people’s face, even if it’s meant in jest.

The two of us further chatted about the challenges of parenting and schooling in a pandemic – and her being a single mom.

While we by no means are going to be BFFs, it was good to make that connection and for me to demonstrate I took T’s actions seriously and in turn, I was glad she also took ownership on her end. My kind of parent!

This experience taught me it’s good to let kids figure things out, but it’s also good – especially at a young age and for kids with additional needs – to help pave the path for T to maximize his success with important matters like his social experience.

I’ve also reached out to the Special Needs Resource Consultant who has been working with T before the pandemic. She said she will reach out to the daycare staff to touch base, including the possibility of refresher training on strategies to respond to his more challenging behaviors.

It was wonderful to end the week on that upbeat and positive note!

Taking Our 5 Year Old for a COVID Test

We had quite the unexpected start to our week when T was sent home midday Monday from school.

He was sneezing and had a runny nose. He also told his teacher he had a fever. He didn’t and doesn’t have a fever – it’s his default word for everything – but because of his cold symptoms, they asked us to pick him up.

Not only that, but we also had to keep T home until he completed a COVID test and we confirmed a negative result.

So the hubby and I rearranged our work day and the entire family went for the COVID test.

The lineup at the hospital was long when we arrived late afternoon.

There are two lines: a screening line where they take your personal information and a test line where you get the QTip up your nose.

Thankfully, we got to cut to the front of the screening line because of T.

The line to wait for the nose swab took an hour. T was glued to the hubby’s phone. We had to change his mask because of how snotty it was.

I was optimistic T was going to be fine given he was in great spirit and didn’t have a fever.

When it was finally our turn, I joked to myself about telling the staff to shove that QTip up T’s nose to teach him a lesson about so carelessly using the word fever. But I was nice.

I was up first. It was quite quick, lasted five seconds. It wasn’t painful but it was certainly uncomfortable. It felt like someone jabbed a metal wire up my nose.

My eyes watered up and although I was not in pain, I had tears streaming down my face.

I tried to tell T that it was not painful at all but I was not very convincing so I left and waited outside. A minute later, I saw T walking out with tears streaming down his eyes.

I bet he learned an important lesson to never use the F word (fever) so casually again!

And so, it was a return to homeschooling – while working – again this week.

The hubby and I were so not mentally prepared for it, so this week felt like a chaotic mess.

Thankfully, we had resources and ideas leftover from our homeschooling journey in the Spring, including those from his teachers last year, that I drew from.

We did some math activities.

And a scavenger hunt, using a card game called Ukloo, gifted from a wonderful teacher friend, that helped us practice reading and recognizing sight words.

As well as outdoor time (in the backyard only), letter tracing, roleplay games, and bedtime reading.

T’s amazing child and youth worker also reached out to us and she did 30-minute virtual lessons with T on Wednesday and Thursday.

Thanks to her, we discovered that T is now drawing pictures in class. He drew a wonderful picture of a dinosaur.

And our two cats Kyrie and Lanaya.

I felt the return of being so scattered with juggling work and T – and I didn’t do a good job of managing my stress level at all this week – and the parental guilt of feeling like we were not doing enough for T.

It certainly made it clear to me that the hubby and I are screwed again if we were to have a second lockdown this fall.

I just had to keep reminding myself of two things: 1) missing a week of school in the grand scheme is not the end of the world, 2) it’s important to respect and appreciate the protocols that schools have in place to keep everyone safe.

T had quite a few hard moments to deal with this week. When routines go out the window, he gets easily emotionally disregulated. In fairness, who could blame him for not wanting to be home and wanting to be in school. But it was also quite awesome to see the growth in him between now compared to just a few months ago.

So there’s always a silver lining!

Oh and in case you were wondering, the results were negative!

I’ve never hit the refresh button on a web page as much as I have this past week. T was driving me nuts at home, to be completely frank!

We received them this morning.

I must’ve woken up the entire neighbourhood when I screamed “Negative!” at the top of my lungs.

It was not a surprise as it’s exactly what we expected. He was fine all week. But nonetheless, it was a big relief and we felt grateful to have it confirmed.

We told the teachers and his daycare we were going to keep T home for today – and possibly on Friday – until his cold symptoms go away.

The last thing we want is to get the other kids in his class sick and then the school has to shut down.

Cuz if that happens, Lord help us all, I may jam that QTip up into my brain myself.

Goodbye Summer, Hello Autumn

It’s the first Fall weekend and we enjoyed a Saturday afternoon hike at Rouge Urban National Park, a wonderful oasis nearby our home.

We were blessed with a last blast of summer weather, so we all wore t-shirts and shorts with the added benefit of no bugs or sweltering heat.

It seems like everyone in town wanted to soak up what’s left of summer. The parking lot was packed and we parked on a side ditch with the other latecomers.

We enjoyed a short hike that took us up a hill and into a forest. It was nice seeing the yellows, reds and oranges starting to emerge.

There were a lot of people out, so we had our masks on during the moments we passed by large groups and families.

It was nice seeing others making the most of these ongoing pandemic conditions while keeping safe.

We spent the last part of our visit by the small pebbled river. T dug up rocks and hurled them in the water. He finds this very calming.

We rewarded ourselves afterwards – not that it was a strenuous hike – with sweet cold slushees from the gas station on our way home.

During bedtime this week, we read the book “Goodbye Summer, Hello Autumn,” wonderfully told and beautifully illustrated by Kenard Pak. It’s an appropriate book for the times.

Hello autumn, indeed!

Playing With the Older Kids

A pair of older kids have formed an unlikely group for T to play with after school.

Four weeks ago, our end of day routine became one hour of play at the playground next to his day camp, which is now his after school program.

It’s a nice playground and even big enough for me to comfortably play in with T too.

The first week of school is now in the history books. It is so nice to be able to pick T up right after I log off work at 5.

I used to get home from work after 6 and it was the hubby who did pick up. But working from home has changed our routines.

Picking T up and playing with him before dinner means that T gets to wind down at home afterwards and then we start his bedtime routine early. It’s been so great and hope it stays this way.

T and I met the older kids A & D four weeks ago.

After camp pickup, T wanted to stay and play in the playground.

A and D, 12 and 10, came to play and T did his usual circling them trying to get their attention. And they were nice enough to let him play tag with them.

I liked that they played hard and didn’t pretend to be slow like me. They gave T a real workout. T started crying at one point cuz he said “I don’t like being It!”

Then T got thirsty and I told him there was a water bottle in the car. I was hoping to use that as an excuse to head home. But T wanted to come back and play and I didn’t have the heart to stop the nice moment he was having.

When I came back with T, the two kids were waiting and asked if I had water bottles for them. I was like, “No and you shouldn’t take water bottles from strangers!”

“How old are you?” A asked.

“I’m gonna be 40 next year.”

“You’re the same age as my mom,” A said. Then started telling me he’s getting braces and then showed me his teeth. Then he asked me if I ever got into fights with kids at my age and if I took karate to defend myself.

I’m smiling uncomfortably and awkwardly and thinking to myself, “Jesus Christ, just play with my kid. I don’t need to know your life story!”

All jokes aside, what two nice kids to spend their time playing with a small kid. T came home with his hair sweaty and messy, his face flushed pink and a content smile. He even finished two servings of his dinner!

Since that first meeting, we see them often at the playground.

They like to play tag and this game called grounders, which I have no idea how to play.

It’s very interesting to see the dynamics and the personalities at play.

A & D, and a few other kids who come and go, often get very frustrated with T because T is not good at reciprocating.

T always asks them to chase him. But when they tag him, T would either say that they didn’t tag him, that they missed or that they cheated.

A would get frustrated and come to me to vent. “This is so stupid. He is being very annoying,” he’d tell me. D was often more understanding.

Sometimes, T would then stop chasing them and go off into his own world.

I try not to interfere because it’s important for T to learn social interactions on his own. But I would yell from time to time to give T a gentle reminder to go chase the kids.

“Show them how fast and strong you are,” I’d say with a little encouragement.

It’s also interesting to see how the dynamics change when other kids come around. One time a group of girls, whom I assumed were their classmates, came to play. Then T suddenly became invisible to A & D. Ditto when a group of even older kids came.

Such is life and the societal pecking order for a little 5 year old!

At the end of this recent school week, D was cycling by the after school program when I went to pick up T. He waited for T to come out of the school.

D told me that he was doing school virtually and I got the sense that he felt lonely – being an only child. And yes, I know these things because these kids tell me their life story. I don’t ask!

T and D played tag and chase for a good hour.

Four weeks since they started playing together, I see more willingness from T – with a healthy dose of whining – to do the chasing too and not just to be chased.

And for a kid who was half D’s age, he gave the older kid a good run for his money!

Then T asked me if D could come to our house to play. Then I told him that I don’t think D’s parents would like me doing that without asking them!

Note: The older anonymous child pictured with T at the top is not related to this post. He’s the son of a good friend from a recent get together. This photo was used for illustration purposes only. 🙂

Working with Teachers to Maximize A Special Needs Child’s Success

The first day of senior kindergarten is in the can and we are looking ahead to the new school year with cautious optimism.

T got a fresh haircut from the hubby last night, went to bed early, got 10.5 hours sleep and woke up rather pleasant.

We are thankful to be starting in a very good place this year. He has a supportive principal who advocated for and hired a child and youth worker who’ll work one-on-one with T in the class. The school, including his amazing teacher from last year, also gets and supports his needs.

The drop off today was good. We met his teacher and the child and youth worker – who spoke us with on the phone last Friday. His principal was also at the greeting line.

Everyone had masks on and class start dates are being staggered throughout this week. I feel he is in good and safe hands.

Teachers and educators play an important role in influencing a child’s growth in and enjoyment of school.

T’s very first day of daycare when he was still 1 year old. Time flies!

T has struggled with hyperactivity and focus since his preschool days and while he’s made gains, it’s an area that continues to present challenges.

Educators are important allies in a child’s development.

Generally, I’d say – and based on anecdotal evidence from other parents on virtual forums – FASD is not a condition many teachers know about nor understand.

As such, parents play an important role in working with educators to raise awareness to maximize the child and the educator’s success in the classroom.

I’m by no means an expert in parent-teacher relations, as I’m so new at this, but here are a few lessons I’ve learned the last three years.

Teachers want to do their best to support your child – I don’t think any professional wants to do a bad job. It’s tempting for me to go into a new relationship with boxing gloves on, ready to go to war for T. But I try to start with a blank slate, an open mind, and cautious optimism.

Take the teacher’s lead… – During our call with T’s teachers on Friday, I listened to their thoughts and answered their questions. I resisted the urge to dump all of this advice on them. No one likes unsolicited advice nor know-it-alls who think they can do their job. I will see how the first few weeks go and I want the teachers to form their own opinions of T – strengths and weaknesses – and then regroup to see how it’s going and strategize together to address issues.

… But be upfront about the challenges … – Since our negative experience with T’s preschool Montessori, we’ve been upfront with teachers and schools about T’s prognosis of at-risk FASD. It gives them an idea of what to expect and an understanding of the challenges they may face.

… Be open to critical feedback – We’ve always told teachers they can be honest with us and not worry about sugarcoating things nor offending us. We can and we need to take the honest feedback.

… And provide resources and supports when required – Most special needs parents – us included! – will likely tell you they have binders full of articles and resources at the ready to share. It’s good to be prepared should teachers ask questions. For example, I find this video below by FASD expert Dan Dubovsky so helpful to share with educators to give them an understanding about working with students with FASD.

Know When to Advocate and Push Back … – I’m all about working cooperatively and respectfully with educators. But I realize there are situations where parents need to stand up and speak their mind, to question decisions, and to demand a different approach to supporting their special needs child. This may include requesting an IEP or related accommodations. This is not the first step I’d like to take in any relationship but I know this is always a possibility. But let’s hope not!

… and Draw on Community Supports – We are very lucky to have a superb team of community supports for T, including a special needs resource consultant that works with him in his after school program and a behaviour therapist who’s made herself available to provide recommendations to T’s teachers and us. And we’ve been so lucky to have a principal and teacher team who’ve been open and receptive to getting this feedback.

It’s a true collaboration – A parent knows their child best and a teacher knows their classroom best. Working together, I think, is the best way to maximize the success of the child – special needs or not. I try to be mindful of this when I’m navigating any relationship, whether with an educator or not. Know when to lead and when to step back. And hope the personalities work well together!

It’s tradition for me to take the first day of school off work to be on standby for issues.

Other than doing a bit of work in the morning after drop off, I took it fairly easy today.

At the end of the school day, I drove by the school to make sure T got on the bus to his after school program ok. Buses are always wonky on the first day, so we’re better safe than sorry.

I ran into his child youth worker, who said that he had a good first day. I felt great hearing that.

Then I told her I was going to hide in the distance so he doesn’t see me.

I stood behind a school fence and watched him walk out, with his fall jacket and backpack on, following his child and youth worker onto a bus.

It still blows my mind sometimes thinking that T has his own little life during the day.

When he boarded the bus, I got into the car and drove home to enjoy what’s left of my day off.

At a red light, I watched an elderly woman walk across the street with a young boy in her hands and I smiled and waved at them.

Happy Meals and Summer Memories

Summer fly, winters walk. T got an extra week of vacation this year but it’s time to head back to school this week.

This has been a strange challenging summer. I’m thankful my family stayed safe and got to make the most of it and explored the beauty of Ontario.

I know this was a privilege and so I feel extra thankful for these blessings!

I’ll hold dear the memories of our hikes, swims, picnics and long drives and I look forward to more adventures and a return to normal in the summers to come.

Here are just a few moments I’m smiling about as I look back at photos from the last two months.

The free outdoor City-run pool was such a blessing. T and I were there 3-4 times a week after work and day camp. It was a joy seeing his confidence in the water grow.

The many Minion toys pictured above – and that’s not all of them – were from the Happy Meals we had from McDonald’s Drive Thru after our swims.

We kept our distance from family and friends, except for three occasions this summer – doing socially distant and outdoor activities, including a day trip on a pontoon in Port Perry.

It was so nice to catch up with people and you almost forget what it’s like to interact with humans in real life until you do so again!

Our 9-day family roadtrip to Thunder Bay and back and our weekend trips to Killbear in July and in early September were much-needed recharge in nature.

It made me heart soar seeing T feel truly free in the wild and to see his spirited embrace of our hikes and swims in the wild.

It was a real joy when playgrounds reopened.

The countless hours we spent in the playground after day camp or during weekends created a wonderful mosaic of memories for T and I.

While it tugs at my heart to see T struggle with social interaction at times, it also makes me beam when I see his determined spirit to play with others and his successful moments at doing so.

Day camp reopened in July. What a relief for all of us to be able to have T some much needed social interaction with other kids and for the hubby and I to have some singular focus on our work.

The day camp staff were amazing and so understanding in working with T.

This was also the summer we made the decision to try medication for ADHD. The results have been mostly positive but with some continued challenges.

And it’s also the small and simple moments that add up – like our countless walks as a family around the block, to building forts, and for me, cooking homemade meals like chicken masala (above) to help pass the time.

Strangely enough, I think when I look back at this summer one day, it’ll be curious to see how much the word pandemic permeates into my viewpoint.

COVID-19 certainly affected our day-to-day life. But if I could sum up this summer in a few words, it would be: family, adventure, nature, being present, gratitude and resiliency.

I hope you all had a great summer and best wishes and continued safety for this fall!

Tiny Homes, Big Dreams

Less is more is an adage I believe when thinking about home life and our five-year-old T’s future adult life.

I found this story of father and son co-living through a tiny home and this story of a father and his 15-year-old creating a shipping container home to be so charming.

For anyone not familiar with the tiny home movement, it’s exactly as the name suggests, creating tiny but livable spaces and sometimes through repurposing shipping containers.

A quick search on Google reveals countless examples of incredible and creative possibilities.

The hubby and I are working towards giving T the skills to be able to live on his own one day. That is every parent’s desire and expectation.

But we are also mindful that there may be a future where T would need to be supported by us in his adult life.

The hubby and I live in a suburban area near a big city. This is the home we plan to grow old in and to watch T grow up into the wonderful young man we know he’ll become.

We talk a lot about retiring in the East Coast, where the hubby grew up. Away from the hustle and pace of city life and more out in nature.

Out East, homes and land are cheaper and you get more acreage for your investment.

It is during our moments of dreaming that we often imagine the idea of building a tiny home within our lot for T, should he live with us.

The idea of a tiny home or a shipping container home is certainly charming.

More so the idea of the hubby, T and I turning it into a family project. This certainly taps into my hubby’s home renovation flights of fancy.

I realize I’m making a generalization, but I often perceive Western culture to expect kids and their parents to live apart when the kid ages.

Whereas in Asian culture, it’s more common for multi-generations of families to live together.

So this is certainly a possibility for us one day.

Whatever happens in the future, we are taking it one day at a time and look forward with optimism.

But it certainly is nice to get lost in a dream as we think about all the wonderful possibilities ahead of us.

Top Image: From Wikipedia Commons and used under the Creative Commons license.

Wearing Red Shoes to Honour FASD Awareness Day on September 9

T is wearing red shoes to day camp today in honour of FASD Awareness Day.

Commemorated annually on September 9, to symbolize the ninth month of pregnancy, this day serves to raise awareness about Fetal Alcohol Spectrum Disorder, specifically about the plights of drinking during pregnancy and about the struggles of individuals with FASD.

Wearing red shoes on this day was an idea began by RJ Formanek, an individual with FASD, to help start conversations about FASD.

Our five-year-old has a prognosis of at-risk FASD, because his birth mother has stated that she drank during the first three months of pregnancy, when she was unaware that she was pregnant.

FASD is a spectrum and the effect on each individual will differ.

For T, and for us as his parents, the biggest challenge to date has been around behaviour.

He struggles with hyperactivity, difficulty with focusing on a task, emotional regulation and impulsivity.

These are foundational skills that can influence how he experiences the world – such as school and friendships in the immediate future.

FASD is a brain-based injury and is a little understood condition. It is an invisible disability and it often leads to people thinking children like T are badly behaved – when in fact, the behaviours are symptoms of his condition.

One of the most painful moments in our parenting journey to date was when T’s Montesorri pre-school program booted him out after a parent complained anonymously – cowardly, if you ask me – to the owners about T.

While FASD is a lifetime condition, it does not have to be a life sentence.

With the right supports, individuals with FASD can have positive lives and thrive.

I will say this loud and proud, our T is bright, caring, tenacious, funny, curious, creative, and a storyteller.

He has benefited tremendously from early intervention services – such as speech therapy (the kid won’t shut up these days), occupational therapy and behaviour therapy.

One of the most important lessons I’ve learned in this humbling parenting journey is that you don’t need to lower your expectations but rather you need to adjust your expectations and to accommodate your child’s needs to maximize their success.

T does not have an FASD diagnosis, because his developmental pediatrician wants to wait until he’s older because he has been doing well at his check ins.

He did recently get a diagnosis of ADHD and we started him on medication this summer.

With that said, the hubby and I are operating under the worst case scenario – and assuming he has this diagnosis based on exhibited behaviors – as it’s allowing us to give him the scaffolding he needs at home and at school.

Advocacy, such as FASD Awareness Day, are so important to helping spread the word to reduce stigma.

In Canada, it is estimated that 4% of the population are affected by FASD. That’s over 1.5 million people. And yet, so little awareness and understanding about this condition exist.

FASD has long held a negative stigma. Labels are so wrong, but it is how society tends to operate and function – myself included until parenting changed my view of what special needs means.

T doesn’t know about his condition. But I know and I can tell that he is aware of his actions and their effect. He gets upset, for instance, when a kid doesn’t want to play with him at the park because of his rowdy behaviour.

Talking about his challenges, whether as a diagnosis or in the context of pre-natal alcohol exposure, will be a conversation for when he is older. It will be difficult.

But honesty is the best policy. T is a bright and determined kid. I am hopeful that he will embrace it and channel it into something positive and to build his resilience.

I’ve written quite openly about the highs and lows of parenting a child with great potential and challenging needs.

It is the most rewarding thing I have ever done in my life – and the most challenging thing.

T pushes the hubby and I like no other thing in our lives have ever done before and on some days, I really just want to scream at how hard raising this kid is.

But it all comes back to us in spades – through love, exhilaration and joy.

And that is the message I want to share on FASD Awareness Day: there is so much love in and from children like T. That is what I choose to focus on as we look and move forward with cautious optimism and pragmatic positivity.

Summer on ADHD Medication: The Good and The Ugly

Our five-year-old T started medication for ADHD in July. It has yielded positive and challenging results so far.

Starting T on medication was a very hard decision. But we made this decision because we knew the potential rewards were worth trying and worst case scenario, we could stop it.

We started him in early July. He was home with us for two weeks – transitioning between the end of school and the start of day camp.

Aside from a week away on our family roadtrip in early August, T was in day camp for six weeks.

This is the same before and after school and staff team that he’s been with from last September to March before lockdown. This summer, he was in a class with only 4 other kids and 2 teachers.

We had a call with his day camp teachers last Friday as an end of summer check in about T.

They said that they have seen a growth in T since March.

He is more communicative and expresses his desire to play with other kids. He is able to sit down and enjoy lunch with them.

They said T likes to share stories about what he did on the weekend with his Papa and Daddy. It’s a joy for staff to see him come out of his shell.

They said that T likes to be a comedian and likes to see other people laugh.

On the flip side, behaviour continues to be a big challenge.

They said while he can focus a little more, they don’t see a big change in this area. Sitting down to complete an activity like art or writing is not something T can do.

Social behaviour and emotional regulation are also a struggle.

When T doesn’t get his way, he screams and gets upset. He sometimes grabs the kids. When T has outbursts, he would hit other kids and teachers.

As a result of this behaviour, the kids sometimes get scared of him and don’t want to play with him and he would then play by himself.

They said that T is not grasping the idea that kids sometimes need their own space.

They said that T likes to copy and mimic the other kids and the kids sometimes get annoyed at this, but T doesn’t understand that they don’t like it and he keeps doing it.

The staff are great to work with. They know how to use behavioural strategies to redirect T. They often ask him to go to his cubby and to calm down.

Staff said T is able to calm himself down quickly but often comes back and repeats the same behaviour.

Staff noted that T doesn’t like being in trouble. He feels remorseful. He is aware. They see this as a positive growth and maturity.

I am appreciative for the honest feedback. I like people who don’t sugarcoat things, as it gives us a clear picture of his growth and challenges.

While it was a bit disheartening to hear the problem areas, I have to remind myself of a few things: 1) T was only in camp for six weeks, 2) T was outside of a school environment for four months and 3) the teachers said they see growth and gains too.

It’s funny to think – and I know I’m not the only parent who feels this – that medication is not the be-all and end-all. It’s not going to fix our T overnight.

Like many kids with the same prognosis, T’s struggle with hyperactivity, sitting to complete a task, emotional regulation, and understanding social cues will present him with challenges moving forward.

I feel both apprehensive and hopeful for what the new school year will bring, but I am not naive enough to think that there will be no struggles. There will be many many of them.

We’ve also had to adjust his medication dosage – in consultation with his developmental pediatrician – because he was getting intense moments of rage. Removing the third dosage in the late afternoon has helped.

The hubby and I have decided to wait and see how T does in school this Fall to get a proper picture of the efficacy of medication.

We are well aware that medication is a trial and error journey.

For now, we see many positives and reasons to feel hopeful and to stay the course. As for the continued challenges, we will not let them knock us or T down.

We’re gonna and we gotta keep looking and moving forward. There’s no other choice.

Nature and the Passage of Time

Trees tell the story of time. Standing on the rocky Georgian Bay shore scanning the tree line, I see hints of red, yellow and orange.

The autumn chill is in the air.

Labour Day is the last blast of summer vacation before school starts. This year, school is starting a week late to give schools an extra week to get organized amidst the chaos of the pandemic.

Our family usually goes camping over Labour Day weekend. This year, we chose a day trip back to Killbear Provincial Park.

We were at Killbear earlier this summer and T loves it here – we all do – so we went back.

It was cloudy, windy and cool when we first arrived. But the clouds soon parted and the sun came out, revealing a beautiful late summer afternoon.

Since our first visit with T in 2016 at age 1, we started a tradition of taking a photo of him by the windswept Killbear Tree.

It’s a wonderful way to tell the story of the passage of time.

Of when he was just starting to take his first steps and getting confident with walking in July 2016.

To a return visit in July 2017 when he’s a full on road runner, charging up and down the rocky shores with confidence.

To our most recent visit this weekend – September 2020 – where you could see his growth spurt.

I look forward to many more visits to Killbear over the years to come.

I hope to print, frame and hang these photos one day.

Soon, the tree canopies in Ontario will be draped in the fiery and warm colours of Fall before they are covered in Winter’s snow and ice; naked in the cool early days of Spring before they bloom in the reemergence of Summer again.

Time flies so quickly and I’m thankful for the wonderful memories we made over this unusual and challenging summer.