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The Beginning

If asked the question, what is the most memorable event in your life, what would your answer be? Just take a moment and really think about it.

I am guessing that most people would say their wedding day, the birth of their children or perhaps the death of a loved one. For me, the day that defined my life and the life of our family was October 29, 2014.

October 29, 2014. It was the day our family changed forever. I will never forget sitting in the doctor’s office after the ADOS assessment and she said Tyson has autism spectrum disorder (ASD).

It felt like all the air was just sucked out of the room. I immediately began to cry and didn’t hear much of what was said after that, except one thing stood out for me – if you have met one child with autism, you have met one child with autism. I’m sure other parents on a similar journey will probably remember these same words.

It is suppose to be comforting words, meaning that all children with autism are unique and that you can’t predict their future.

For me, these were not comforting words. In fact, it was the opposite. To me, it meant this professional here in front of me could not tell me what the future held. It meant she could not tell me if Tyson would ever speak.

Despite all the signs and months of questions leading up to the diagnosis, I was still in shock that Tyson had autism. I had gone to the family doctor with concerns and the public health nurse with a list of all the milestones that Tyson should be meeting but was not, yet after waiting months to see a child developmental pediatrician, I was still in denial.

For those that do not know, ADOS stands for Autism Diagnostic Observatory Schedule. We were invited to this little room, accompanied by a speech language pathologist (SLP) and a nurse, while the physician and the intern were behind a one way window.

Both the SLP and the nurse tried to engage Tyson in activities – play with toys, blow bubbles, join them for a snack. The job of the parent is to just sit there quietly and not provide any assistance to the child. With each task that Tyson did not engage in, the answer to our question was clear, yet I did not want to hear the answer.

In my mind, I was willing him to put the candles on the fake cake, and willing him to pretend blow them out … it did not happen. Each time they said his name or blew a bubble and waited for a response, my heart sank a little deeper. I tried to blame his lack of participation on his head cold but as the doctor said, he had all the signs.

For some parents, a diagnosis brings relief. For many, the journey from acknowledging a problem and actually getting a diagnosis can be up to 2 years. I’m not sure if that contributes to the feelings of relief or if those parents were just in a different mind frame than I was.

For months after Tyson’s diagnosis I would cry every day coming home in the car from work. I had just started a new job a few months prior and so I could keep myself preoccupied at work by completely focusing on learning all the new skills I needed to know. At home, things were busy enough with two small children. But when I was alone with my thoughts, autism was all I thought about. It had taken on its own life form. I could see the word autism in big bold capital red letters in my mind. It was the first thing I thought about each morning and the last thing I thought about each night.

I remember one morning, probably 3-4 months after Tyson was diagnosed, I got in the shower and as I was washing my hair the word AUTISM popped right into my head. I thought, wow, I am doing good today – I made it to the shower without thinking about autism.

Today, that place seems so far away. There are still moments of sadness and grief but they are far and few between. The real turning point for me was when I started to focus on Tyson, seeing him for the amazing person he is. He works so hard each day just to do things everyone else takes for granted. And he truly is awesome.

I am hoping this blog will be a way for me to share our experiences with the world, one story at a time.

Our Family Vacation – Part 3: Universal Studios & Aquatica

It may seem a little strange to be writing about a summer family vacation in springtime, but I promised I’d share the details of our Universal Studios experience. I feel I need to follow through, and my personality simply won’t allow me to write about anything else until this vacation blog is complete!

Preparing for Universal Studios

Universal Studios uses a non-affiliated organization, the International Board of Credentialing and Continuing Education Standards (IBCCES), which specializes in professional autism and neurodiversity training and certification, to aid them in verifying if an accommodation is needed.

Through the IBCCES, an individual can apply for an IBCCES Accessibility Card (IAC). The IAC is a digital card that streamlines the process for individuals who may need accommodations to various attractions (including Universal Studios) to be able to participate.

Having an IAC does not guarantee the park will grant the accommodation but merely provides the park reassurance that the individual has an exceptionality that would warrant an accommodation(s) to have a successful visit. In this case, Universal Studios would determine the appropriate queue accommodation based on the the individual’s specific needs.

Confused yet?

The Process

To apply for the IAC, individuals must register with IBCCES at accessibilitycard.org within 30 days of when they plan to visit the attraction. Unlike the Disability Access Service (DAS) at Disney, the IBBCES requires medical proof of the need for an accommodation. Medical proof must come in the form of a document that is to be provided by a medical professional, school or government entity that provides some insight into the required accommodation. For Tyson’s application, I did not have time to get a note from his doctor, so I uploaded his Individual Education Plan (IEP) document from school. One must also upload a recent picture of the person requiring the accommodation as this will be used for the digital card.

Tyson was granted a temporary IAC upon completion of the application and in our experience, within 24 hours the temporary card was revised to processed and valid for 1 year.

When completing the IAC application, you must select which attractions you plan to visit and for what dates. Therefore, when the application is approved, this information is provided to each theme park and they follow up directly with you to discuss your accommodation needs.

At the same time I had received the IAC for Tyson, I was also trying to purchase our park tickets for Universal Studios and for some reason using their online system was not working (remember we booked this trip 2 weeks before we departed so all the things needed to be done ASAP). When I called the customer service number for the park, I mentioned that we had received the IAC and were waiting on a call from Universal Studios to discuss. They simply transferred the call and within a few minutes, Tyson was granted the Attractions Assistance Pass (AAP) for our upcoming visit. Additional information about the AAP and the accommodations they offer can be found here.

Like Disney, Universal Studios offers access to a shorter queue line for attractions, which you can purchase on top of your ticket price called an Express Pass. I was told by Guest Services that Tyson’s AAP would act exactly like the Express Pass and therefore we did not need to purchase that separately. And the most amazing part was the AAP would be granted to our entire party. I thought it would be best to purchase the Express Pass for Lincoln and Mark as I thought Lincoln and Tyson would probably not be visiting the same rides. However, I was told this was not necessary. The AAP would be applied to each ticket, irrelevant whether Tyson was on that ride or not. This is in contrast to Disney, which requires the person granted the accommodation to be on the ride for the family to use the DAS.

Simply amazing!

Just like planning for our Disney visit, I did a lot of research before traveling to Universal Studios by reviewing the different themes within the park, food options within the restaurants and of course rides that would be suitable. I also showed Tyson numerous Point-of-View (PoV) videos so he could get a feel for what he might experience on the ride and make decisions on which rides he would like to do.

He was very excited to ride the Trolls Trollercoaster and that was the only ride on his list.

Like Disney, Universal Studios has a great app that allows you to view attraction wait times, locations of character meet and greets, and restaurant menus. I highly recommend downloading the app before you visit.

Our Universal Studios Day

Although I talked about Disney in Part 2 of this series, we actually visited Universal Studios before Disney. The reasoning behind it was that we had all planned to go to Universal Studios, and if visiting these attractions ended up being too overwhelming for Tyson, at least we would still have had the chance to enjoy one park day together as a family.

Well, let me set the stage for our park day adventure.

What no one prepares you for is the significant time lapse from the moment you arrive on Universal property until you are inside the park gates and approaching your first ride.

We parked, walked, lined up, and walked some more.

It was super hot (34°C).

The lineup for security was straightforward. I was a little nervous as security requested each of us to walk individually through the metal gate detectors but Tyson handled it like a champ.

We then proceeded to the Universal City Walk area to access the park.

You then line up again to get a printed copy of your ticket and have your picture taken as you enter the gates to the park.

As we were availing of the AAP, we then needed to visit Guest Services to have the AAP applied to our tickets. Unlike Disney which has fancy wristbands and/or plastic cards for admission, Universal Studios simply has a printed paper ticket. The AAP is just another ticket to accompany your admission ticket that would need to be scanned at each attraction. (I would recommend wearing a lanyard to hold your ticket, if not you would need to take this small admittance out of your pocket/wallet every single ride.)

We entered the park and everyone (well almost everyone, as excited as teenagers get) was excited to start our adventure. We walked (some more) but something didn’t seem right.

I was expecting to see the Minions sign but there were no Minions in sight. I had watched lots of videos about Universal Studios and the sign seemed like it would have been a prominent feature near the entrance, so I wasn’t quite sure how we missed it.

We kept walking but still no sign of the Minions. Tyson kept pointing to this ridiculously large, green rollercoaster.

No kid, that is not going to be our first ride.

We circled back and I asked someone where Minion Land was.

Well ……

Despite all the planning, all the watching TikTok videos, all the researching, we had entered the WRONG PARK.

We were in Islands of Adventure and not in Universal Studios. These two themes are adjacent to each other.

I am not sure if this is a common occurrence or just an us thing but I feel someone should have mentioned this in the many videos I had watched.

Back to Guest Services again to change our tickets.

By this time, we were more than an hour in since we parked and people who will remain nameless were starting to get cranky.

And the heat was just unbearable. (Note to self: pick a cooler month when planning a vacation that requires significant walking.)

Luckily we were able to change our tickets and we were back on our way again.

We see Minion Land and for the first time in a long time, Lincoln is excited to do something with Tyson. Although we had agreed to separate, Lincoln said he wanted to do Minion Land with his little brother.

We get to the first attraction, Illumination’s Villain-Con Minion, and go to enter the lineup for the attraction only to be faced with Problem #2.

I had forgotten to ask for an accommodation for the stroller and the attendant told me the stroller had to be parked outside. Bummer!

This was not going to work. Depending on the lineups for each of the attractions, I was concerned Tyson would not be able to wait patiently in line, especially when he was excited to get on a ride.

Back to Guest Services again.

Sigh.

Did I mention it was so hot?

This time I ventured back to the entrance alone and let the rest of the family start the fun day.

Although I was apprehensive of how Tyson would make out on his first attraction and I was melting with the heat, I quickly made my way back to Guest Services for the THIRD time to request the accommodation. I got some strange looks as I bolted back to the entrance with an empty stroller.

Despite our rocky start, when I met back up with the family, I could tell from their smiles that everything had gone well at Villain-Con. Lincoln was so happy and proud he suggested we all go on Despicable Me Minion Mayhem next.

If I could engrain one memory in my mind forever it would be Lincoln watching Tyson on the Minion ride and both kids smiling.

These types of moments do not come easy for us – both kids participating in 1 activity and not just enjoying it, but loving it.

The picture does not do this memory justice.

Waiting for Despicable Me Minion Mayhem ride to start. FYI – Lincoln was in the process of fixing his hair (teenagers!)

Tyson seemed to have done his own “research” about Universal Studios as he knew exactly where he wanted to go next …. the entrance to Illumination Theatre.

I had seen a very small crowd of people (perhaps 10-15) gathered on one of the side streets and passed by it, but Tyson insisted with his pointing that we check it out.

Little did I know this was the location for the Illumination Theatre, a character meet and greet.

And who happened to be there but our favourite Despicable Me character – Vector.

For anyone not familiar with the Minions or Vector specifically, google “Despicable Me Vector – tiny toilet”, it’s hilarious.

Despite our small hiccup, I had so much confidence that I beckoned Mark, Lincoln and Meagan to go have fun and try the bigger rides and me and Tyson would hang out and seek out DreamWorks Land.

What a fun day we had!

Me and Tyson may have ridden the Trolls Trollercoaster four times in a row. He loved it.

Tyson riding the Trolls Trollercoaster

As this was his first time on a rollercoaster, I was a little nervous he might get scared so I reached out and held his hand during the ride. Each time we rode any of the rides, he would reach out to hold my hand. It’s funny now when I think of it, as he was the brave one and loved all the thrill-seeking rides.

For some reason, Universal Studios did not feel as overwhelming as Disney. Although it was quite busy, I never felt congested with people.

I also did not feel the sense of urgency I did when visiting Disney, like I needed to make the best use of my time to fit it all in.

Things were going so well ….

Then Mark may or may not have fractured his rib on a ride (let’s see a show of hands for anyone out there who feels their husband needs as much, or perhaps more, supervision as their children).

Lincoln was excessively complaining: about the heat and how tired he was and his feet hurt. Like seriously, who wears slides to a park when you know there will be a lot of walking involved.

We decided a food break, with some time out of the sun, was needed for everyone. Although there were many restaurants on-site, the vote was to leave the park and go to Raising Kane’s, which Lincoln had been excited to check out since we arrived in Florida.

For some reason, crinkle French fries and homemade chicken fingers were exactly what everyone needed.

Luckily for us, when choosing our accommodations we decided on a central location so heading back to our rental house was convenient.

Now with food and a little break, myself and Meagan were ready to head back to Universal Studios and get the “most of our money”. Both of us are good travel buddies and have the same mindset on vacation, wanting to make the most of our limited number of days and soaking up every single minute.

Well, plans to head back to Universal Studios alone and hit up the more adult, thrill-seeking rides were derailed when Tyson hopped out of the pool and insisted on accompanying us.

Who would have guessed when just the week prior I was freaking out that this trip was a bad idea, that Tyson, Meagan and I would be leaving Universal Studios at closing?

What a special day we had!

And what a great park to visit for kiddos needing a little extra.

The AAP was amazing – I never felt Tyson’s accommodations were more easily met.

The difference between the character meet at Disney and Universal Studios was vast with pros and cons on both sides. Disney did not honour the DAS for character meets, therefore you had to lineup – which is fine if your kiddo is capable of waiting in an hour or longer lineup. Universal Studios did ensure your wait time for character meets was reasonable and doable for a kid who is not capable of waiting. However, I felt the experience was a little rushed – perhaps that is why their lineups were shorter? Disney has many more character meet opportunities and photographers (for their Memory Maker package). Universal does not have photographers at their character meets but they will take a picture for you.

Overall, we had a great day despite the mishaps. As you probably can guess I’m a glass-half-full vs glass-half-empty type of person.

AQUATICA

As mentioned earlier, the IAC is for multiple attractions and another attraction that we visited that accepted this card was Aquatica.

When we arrived at Aquatica to receive the accommodation we had to proceed to Guest Services, show the IAC and then Tyson received a special bracelet that indicated he had the Ride Accessibility Pass (RPA). I had emailed Accessibility Services several times before we arrived to ask a few questions but I never got a response.

As I sit here and recall my thoughts about our visit to Aquatica I am trying to put my general feelings about swimming and water parks aside.

Water parks are not the place for me – I am a poor swimmer; I dislike the water and I have an intense fear (most of the time) that I will drown.

But I try very hard not to pass on my fears onto my children.

So off to Aquatica we went.

Still trying to be positive, Aquatica is an autistic parents’ worst nightmare.

The crowds were incredible, especially during the hot Florida summer months.

The water park is huge making it difficult to stay connected with family members if you separate (and with no phone physically on you, makes it impossible to reach one another).

The food is outrageously overpriced. I may or may not have paid $13 US for a Dip n’ Dots.

And then there was this:

The Water Fortress of Death (stock photo)

This picture does not do it justice. It is massive!

Before I tell you about our Aquatica experience, let me tell you about the IAC and how it works at Aquatica.

As mentioned above, when I applied for the IAC, multiple attractions accepted this card and Aquatica was one of them. A complete guide to Aquatica’s accommodations can be found here:https://aquatica.com/orlando/help/guests-with-disabilities/.

Basically, in a nutshell, the RPA allows the user to stand in a virtual queue and return to the ride or depending on the ride, access a shorter line (considered Special Access).

Only Tyson was granted the bracelet but if he was riding, his entire party (up to 5 people) could avail of the accommodation. Aquatica provides a list of all their attractions (Ride Accessibility Program) which you can review in advance to determine which accommodation would apply for that ride.

Aquatica also has a lovely sensory guide for each ride, pool and amenity clearly marking which senses will be affected when using this attraction.

Aquatica has lockers on site to store all your items. Although they are very pricey, it is not reasonable to think you can just leave your items on a chair and hope for the best. The park is huge and using the locker allows everyone to access their items independently when needed as it has a code-based lock.

The food is very pricey and unfortunately, you are not permitted to bring anything on-site except for water. Exceptions are made for individuals with special dietary needs.

Our Aquatica Day

For me personally, our Aquatica day was the most challenging of our trip.

Tyson was very excited to get going (and difficult to keep attached to us) but before you could set foot in the pool, we needed to apply the sunscreen, visit Guest Services, and secure all our items in a locker.

We decided to ease into our day by taking in the wave pool. I of course not being a strong swimmer wanted to grab a lifejacket in case Tyson ventured into the deep end – which of course is where he made a direct B-line too.

Unfortunately finding a lifejacket to fit was a little challenging – there were plenty of kid jackets to choose from but not as many adult ones, at least at the wave pool entrance. One thing I did like was the life jackets were color-coded so you could easily see the sizes at first glance.

After hitting the wave pool for a bit, Lincoln was anxious to try one of the rides and the ride nearest to us was the KareKare Curl.

It is worth one’s while to check out a YouTube video of this ride. By far, the most frightening experience of my life.

You are seated in a tube that twists, turns and spins, then you exit the tunnel and go hurling up a 35-foot wall (KareKare) at death speed to reach the top to then descend down.

Honestly, it feels like you are flying!

Oh, and lucky me, I got to experience it all back on so when we reached the top of the wall, I got to come down backwards.

Usually, I spend so much time ensuring Tyson is okay whenever he is with me but for this ride, I was completely focused on not dying. When I finally regained my composure, I looked over to see him laughing and smiling.

Well at least one of us enjoyed it!

As soon as he reached the bottom, he made the sign for “more”.

I can’t believe I agreed to go on the crazy ride again – I figured it wouldn’t be so bad this time around as I knew what to expect.

WRONG!

But the kids and Mark loved it!

We spent some time in the lazy river, which is not lazy by any means and it was a little challenging to keep myself within arms reach of Tyson. Although a great little swimmer I was nervous about us separating and feared if that happened, I would never be able to find him.

Although we had been to Aquatica before, I somehow had forgotten just how massive this water park was.

After some time in the lazy river, we made our way back over to the wave pool. Tyson, of course, was determined to get as close to the end of the pool as possible—you know, the spot you’re definitely not supposed to be in, marked off by that rope that practically screams “Do Not Enter.”

And then he eyed the Walkabout Waters – or what I like to call the Water Fortress of Death.

It was at this time that the family parted and Lincoln and Mark decided to go explore on their own.

The Walkabout Waters is a water play structure, which is very large with several of its own mini water slides.

I could in no way let Tyson venture on this by himself with its many exits as I’m sure I would never find him.

Picture this – Tyson travelling at his normal Tyson speed with me trailing behind. It was at this point we came to the wonderful rope bridge. Can I just say this – grown adults are not built to run across rope bridges!

And then I started to get attacked by some kids above.

Someone in their wisdom thought that putting water guns at the top of the playground would be a nice addition.

I looked up to see these two children simultaneously targeting me with their guns.

Seriously, I couldn’t even make this stuff up!

Did I mention I hate water?

And that feeling of a combination of water, chlorine and sunscreen in your eyes!

But yet, Must Follow Tyson!

Tyson found a water slide however I could not let him go down it because then he would be at the bottom and I would still be on the top. And the attendant would not let us ride together and I could not count on him waiting for me at the bottom.

He was not a happy camper.

I managed to get him onto a different area of this Water Fortress of Death but each time he could, he would take off running back to the water slide. Luckily, I found one in the Walkabout Waters that allowed both of us to ride separately but adjacent to each other.

I was soooooooo done with the water playground.

I also thought it was time for us parents to switch kids.

I was exhausted between trying to keep up with Tyson, the intense heat and trying to get over my fear of being in the water.

Myself and Tyson went back to the lazy river and did a couple of loops and eventually found Lincoln and Meagan. Mark was nowhere to be seen.

By this time Tyson was ready to go back to the water playground and Lincoln was hungry.

Tyson had a meltdown and if I was being honest, I wanted to have a meltdown too.

And where was this husband of mine?

We spent some time looking for Mark in the usual spots – the wave pool, the lazy river – but to no avail. It was super hot and my feet were hurting from the hot sand and pavement.

Lesson learned – never go to a water park in Florida in the summer without water shoes. By the time we left my feet had multiple cuts from trying to walk on the scorching pavement and sand.

We spent over an hour and a half trying to locate Mark even though we had said if separated we should meet up in the wave pool.

We all decided to take a little break from the attractions and have some food.

When you have an extremely picky eater, even this can be stressful. We snagged some fries for Tyson but it was a no-go. In his defence, it did not look very appetizing – think school cafeteria fries that had been baked.

So, despite all the energy he has dispelled swimming and trying to escape me, he was only fueled on Goldfish for that entire day.

After refuelling on sub-par food and very expensive Dip ‘ Dots, we decided to try out a couple more rides, the wave pool and head home.

Water parks are exhausting.

If you ask Mark and Lincoln, Aquatica was definitely their favourite day, maybe Tyson’s too.

I got through it to be a good sport but if I never have to go to another water park (unless it was adult-only with a swim-up bar) I would be happy.

But that’s life – you give and take.

This was before Mark’s disappearing act 🤣

Have you been to Universal Studios or Aquatica and have a story to share? Or is there another park that you thought went above and beyond accommodating individuals with exceptionalities? Please share in the comment section below.

Feel free to check out my tip summary below:

Tip Summary for Universal Studios

Apply for the IAC before travelling
Download the Universal Studios app
Rent a stroller, if needed
Watch YouTube or TikTok videos to become familiar with the parks before you visit
Review park guides and sensory information for rides
If you have a picky eater, review restaurant food options ahead of time using the app
Have a park plan – review attractions you wish to visit and consult the park map to make the most efficient use of your day
Wear comfortable shoes
Wear a lanyard for your physical ticket
Pack all the necessities (sunscreen, noise cancelling headphones, snacks, Band-Aids, change of clothes for emergencies)
Wear bright colors on your kiddo so if they do escape (momentarily) they are easier to spot in a crowd
Bring a refillable water bottle
Freeze juice packs or bottles of water to keep drinks cold longer if you visit in the summer months

Tip Summary for Aquatica

See tips above and
Wear water shoes
Purchase a waterproof case for cell phones so family can keep in touch
Arrive early to ensure you can snag an adult life jacket if you need one

Our Family Vacation – Part 2: The Happiest Place on Earth

The last time we went to Disney World as an entire family was in August 2015 and Tyson was just shy of turning 3 years old.

I consider this day to be the one on which I made the most single mistakes.

It was hot.

The crowds were incredible.

And we spent the entire day at Magic Kingdom.

No breaks.

In my defence, I was sort of new to understanding what Tyson needed.

It was also my very first time at Magic Kingdom and I was very wrapped up in taking it all in.

I remember Tyson going on the Dumbo the Flying Elephant ride, which he seemed to enjoy/tolerate and then we did the Buzz Lightyear’s Space Ranger Spin which was a bit of a disaster. The noise, the lights, the spinning – it was all too much for him.

We stayed for the light parade, which thinking about it must have been sensory overload for a kid like Tyson.

And not a pair of noise-cancelling headphones in sight.

Epic Mom Fail!

Tyson was so scared (and overwhelmed) that he cried and cried. The amount of people surrounding us was intense and before I knew it, he was asleep in the stroller. Asleep from the pure exhaustion of trying to survive a very long, overwhelming day at the most magical place on earth.

Tyson sleeping during the fireworks at Magic Kingdom

On our next trip to Florida in 2017 we decided that Disney was not for Tyson so I took Lincoln only, accompanied by my mom and my sister.

When I think of this now, it breaks my heart.

It wasn’t that Disney wasn’t for Tyson, it was that his parents had no idea how to approach Disney through the eyes of an autistic child.

Now that Tyson is older and I have grown in my Tyson Wisdom, we were ready to tackle Florida and more specifically Disney again.

Before I tell you about how different an experience Disney was for us this time around, I want to tell you about how I prepared before visiting the Parks.

Prep Work

Did I mention that I booked this trip two weeks before we travelled? Not a lot of time to get everything in place but doable.

I love a good deadline!

Before travelling to Florida, I started to watch YouTube and TikTok videos all about the parks we would visit.

I made sure to show Tyson YouTube POV (Point of View) videos of rides so that he knew what to expect.

I specifically asked him what he wanted to do so that we could have a tentative plan in my head to tackle those attractions first in case we needed to make a quick exit.

His list was short:

Monster’s Inc Mikey’s Laugh Floor (Magic Kingdom – Disney)
Frozen Live at the Pavilion (Hollywood Studios – Disney)
Trolls Roller Coaster (Universal Studios)

Back again in 2024 (Tyson has an incredible memory. I wonder did he remember his first visit and this is why he added it to his list?)

That list however meant three different parks.

I wasn’t delighted but we had planned to take Lincoln to Universal Studios anyway and perhaps Tyson would forget about Mikey’s Laugh Floor once we had an awesome day at Toy Story Land in Hollywood Studios (insert eye roll).

I would highly recommend before visiting any of the parks or any other attraction to read each park guide to know exactly what sort of accommodations they provide if your child needs them.

Disney’s DAS

Disney has their own set of accommodations it provides to autistic guests through enrollment in the Disability Access Service (DAS).

Their website also contains an enormous amount of information on each of their rides and what challenges an individual may face based on their disability and how they experience the world. This is great for neurotypical children too who may have specific fears or sensory issues. (Sensory Experience Park Guide)

To apply for DAS, I needed to schedule a live interview with a cast member no more than 30 days before our trip. What I didn’t realize was that I also needed to have purchased our Disney tickets before speaking with the cast member so they could assign the DAS to the ticket.

The live interview required Tyson to be present, and although they did not ask anything about his diagnosis, they did ask questions like what waiting in line looked like for him? and what could potentially happen if he was unable to wait in line. The entire process only took about 30-45 minutes, including initiating the request, waiting for a cast member to chat with me and the actual live video chat interview.

The DAS is then applied to the tickets you purchase through the “Disney World” app.

It is important to have all your guest members linked in your app. In our case, my sister purchased her ticket separately and I had not linked her to my tickets in the app at the time I did the live interview. The reason why this is important is that all tickets needed to be linked to Tyson’s ticket for our group to avail of the accommodations.

Before talking about DAS, let me tell you in general how rides and tickets work at Disney for those of you who have never been yet.

First of all, expect to dish out a small fortune for your ticket. The price of your ticket depends on the day you are visiting and which park you are going to. In general, a weekend ticket is more expensive than a weekday ticket and Magic Kingdom is more expensive than Hollywood Studios for example.

On top of your regular admission ticket, you can purchase a Genie Plus which allows you to enter a shorter queue line. (Since our visit Disney has changed this slightly with a Lightening Lane Multi Pass allowing you to book 3 experiences before your visit and/or a Single Pass Lightening Lane allowing you to book 2 single passes per day. Confused yet!)

DAS allows the ticket holder who is unable to physically wait in a conventional queue for an extended time to virtually wait in the queue using the Disney World app.

Does this mean there is zero waiting time? The answer is no.

For newcomers to Disney, for each ride there are two lines. The Standby Lane and the Lightening Lane. Posted above the attractions is the estimated wait time for each of these lanes. By booking a ride time through the app with the DAS accommodation, you are given time to enter the Lightening Lane.

To give an example on a regular park day the wait time for the Lightening Lane could be 10 minutes vs 50 minutes (or longer) for the Standby Lane.

Some points to note: 1) you can only book a ride after you initially scan your ticket/magic band at the park; 2) you can approach the ride line 10 minutes before your booked time on the app; 3) you can only book 1 ride at a time; and lastly 4) once you scan your ticket at the ride entrance you can then book your next ride while waiting in the queue.

Disney DAS does not accommodate character meets. If you want to meet a character and your DAS ticket holder can not wait in line, one person from your group can however hold place in line for the entire party.

So, what did DAS mean for Tyson’s Hollywood Studio visit?

To be honest, it started as a bit of a disaster.

We arrived at Hollywood Studios shortly after it opened trying to avoid the “gate drop” crowds.

Tyson was PUMPED!

So was I, two days prior we had visited Universal Studios (details coming shortly) and it went so well, that I had high hopes.

I think one of the things I didn’t prepare myself for was the amount of time it takes you to get into the park.

The first lineup is for security where all purses, backpacks and strollers need to be searched. After you leave that lineup, you walk a little further and then are herded into a lineup to enter the park. As you can also purchase your tickets at the park itself, make sure you enter the correct lineup if you already purchased your tickets. It is at this point that staff will provide you with a physical admission card if you purchase your tickets online.

Note: If you did not apply for DAS before entering the park you will need to go to Guest Services after scanning your admission ticket. Disney no longer provides DAS at Guest Services but they will provide you with an iPad and you can schedule a live chat on site. I would not recommend this route as it will waste time.

Although I had DAS applied to Tyson’s ticket before arriving at the Park, I wanted to receive accommodation for Tyson’s stroller and therefore needed to visit Guest Services.

Sidenote: Tyson has not used a stroller in years but for this trip, I rented a special needs stroller which accommodates individuals up to 100 pounds. It was a godsend! I booked through Kingdom Strollers and they were amazing to deal with. You can have the stroller delivered to the airport on your arrival or to your accommodations. I was a little concerned that the stroller would not be big enough but it was very roomy and had a little storage bin underneath for our snacks and water. If you also decide to go the stroller route, you need to check that the company indicates the stroller meets “Disney size requirements”, if not you may have a stroller that the parks may not permit to enter the attraction lineup.

Guest Services provided a sticker for the stroller (which can be applied for the entire length of your Disney visit) that signifies to staff that this stroller is considered medical equipment. An accommodation for the stroller allows the user to remain in the stroller while in the attraction lineup.

Although Tyson does not physically need a stroller for mobility, his running is a major safety concern. When he is overwhelmed, too hot, and/or frustrated sometimes he just shuts down and will lie on the ground. Other times when he is overwhelmed, he will run and the last thing I needed was a running Tyson at the busiest place on earth.

Back to our arrival at Hollywood Studios ….

The lineup for Guest Services was a little slow and Tyson started to get frustrated as he was eager to get going. So, Meagan took him for a little stroll to distract him while I waited. Unfortunately, when it was finally my turn, they needed to see Tyson and the stroller before providing the accommodation, so I had to beckon them back.

Finally, we were ready to go.

However, in all the excitement of entering the park, I had forgotten to book our first ride.

Using the app, I logged in and booked the Slinky Dog Roller Coaster and was shocked to see that the wait time was 50 minutes.

We had already spent approximately 30 minutes getting into the park and receiving the stroller accommodation.

This was not what I was expecting. What was I to do with an already antsy Tyson for 50 minutes?

Also, my own irritation started to sink in. When I applied for the DAS and completed the live chat, I asked the cast member about purchasing the Genie Plus (now called Lightening Lane) and he assured me it was not needed. I believe in the chat I had asked him 3 separate times would the Genie pass help us have a more successful day. He assured me that the DAS and the Genie Plus were essentially the same in terms of wait times.

So off we went to make our way to the back of the park to Toy Story Land, taking the scenic route to kill some time, as I knew all Tyson had on his mind was his first ride.

Toy Story Land is exactly how you would picture it in your mind – bright, bold colors with larger-than-life toys and lights.

It is simply beautiful.

Tyson spotted the Slinky Dog Roller Coaster ride pretty quickly but could not understand it was not our turn to enter the lineup yet. It was very hot that day, and Hollywood Studios had little to no shade and Tyson was getting more and more irritated by the minute.

Meagan entered the line for a character meet while myself and Tyson walked around Toy Story Land. When the lineup got closer to the front, we joined her.

(Shout out to Meagan who is down for all the waiting, without complaining, when it comes to making my kids happy.)

Although Tyson was very excited, he did have a hard time waiting. And then as we are in the lineup, the character leaves. Disney switches up their characters every 40 minutes and there is a break between when one character leaves and the other arrives. Luckily one of the attendants did warn me about this and ensured everyone in the lineup that they would be back really soon.

Can I share with you, that watching Tyson meet Woody and Jessie (from Toy Story) was a truly beautiful moment?

This moment will live in my head forever

His little face lit up and his happiness could not be contained as he flapped and jumped.

He gave them both hugs, kissed Jessie and posed for pictures like a pro.

And the cast members allow your child to enjoy their moment. There is no rushing.

Sidenote: Disney has a Memory Maker package which links to your park tickets and is used to upload any pictures cast members take of you and your party at the park. Cast members will also take your phone/camera and take a picture for you as well. There a plenty of opportunities throughout all the Disney parks to capture these moments including some of the rides.

Despite my frustration up to this point, I knew it was all worth it for this single moment.

Because of the long wait lines for the character meets and Tyson’s agitation when Meagan separated from us, we decided it was best to skip meeting the other characters in Toy Story Land (like Buzz Lightyear and Joy) to try and reduce his agitation.

Finally, at 10:45 after arriving at 9:15, it was time for our first ride – Slinky Dog Roller Coaster.

Anxiously waiting for his turn on the Slinky Dog Dash Roller Coaster

Tyson absolutely loved it. It was super sweet and …. Super short.

120 seconds to be exact.

So, what do you think happened as soon as we exited the ride?

Tyson indicated (using sign language) that he wanted to do the ride again.

“More” – As an infant I taught Tyson very limited sign language. To this day, he still uses the sign for more.

That was not going to be an option.

He started to cry as I strolled him away and I reassured him we would do another ride.

The issue was of course that we now needed to wait another 45-55 minutes for our next ride.

I tried to calm Tyson but unfortunately those two minutes of fun was just not cutting it.

I had brought with me a phone loaded with music and videos for him to use when waiting in line for the rides to keep him distracted.

Well, the phone just wasn’t cutting it either.

He quickly threw the phone with gusto on the ground, all while crying and having a meltdown.

The phone did not survive.

I wasn’t sure how I was going to survive either.

As me and Meagan were trying to get our bearings and come up with a plan, a very frustrated Tyson jumped out of the stroller and took off running.

Disney was not feeling like the happiest place on earth for me at that moment.

Smiles all around arriving at Hollywood Studios

Do you believe in coincidences? Divine intervention? The universe sending you a gift?

Well, a couple of days before our trip I had taken Tyson to the playground. An acquaintance who I may have spoken to a handful of times but has a neurodiverse family like mine saw me and Tyson at the playground and came over to chat.

I mentioned we were going on a trip and that I was nervous about taking Tyson to Disney World as our previous attempt did not go so well. She gave me some advice – “Disney wants you to be happy and have a wonderful magical time so if things are not going well, go speak to a Cast Member at Customer Service and they will try to provide accommodations to make your child happy”.

Well, it’s strange that in that moment I even remembered Martha’s words because I find when I get overwhelmed my brain also sort of shuts down and common sense is not so common.

So off we went to find Guest Services.

A lovely lady named Rose was very sympathetic to our situation – the intense heat, coupled with a broken phone and another 40-minute wait was more than Tyson could handle at that point.

She immediately tried everything in her power to cheer Tyson up – she gave him a new park ticket (Woody), booked us two rides back-to-back and gave us VIP seats for the Frozen show at the Pavilion.

Day saved!!!

She explained that our issue with using DAS to book rides at Hollywood Studios was that the number of rides at this park was much lower than at some of the other parks like Magic Kingdom and therefore the wait times would be greater.

I told her we when thinking about park hopping to Magic Kingdom after a little break midday and she assured me that we would not experience the same wait times as there are so many more rides for all visitors to choose from.

*Park Hopper – by paying an extra fee you can visit another theme park on the same day for which you purchased your ticket. It costs less than purchasing a separate ticket for that park. Thanks Jenna for the tip 😉

Tyson enjoyed his additional rides, then we made our way to the Pavilion for the Frozen sing-along, which was a nice break out of the sun midday.

During the show, I ordered some lunch at the restaurant next door on the app and it was ready for us when the show was over.

I guess this is as good a place as any to mention that travelling with Tyson and thinking about what he will eat is very stressful.

I was able to see a picture of very plain-looking French fries on the app and both me and Meagan breathed a sigh of relief when he ate the first one.

(For individuals with picky eaters, it will save you some time if you browse the restaurant menus ahead of time and save the ones you think are suitable. You can order food through the app and select a time you want the food to be ready, reducing additional waiting times.)

With a full belly and a break from the sun, Tyson was happy again.

We closed out our Hollywood Studios day with another ride, meeting Olaf and then letting Tyson choose a toy to bring home.

Me and Tyson on Slinky Dog Dash Roller Coaster

Aunt Meagan and Tyson enjoying Slinky Dog Roller Coaster

Swaying to the music at the Disney Frozen Live Sing-Along

Can I say it’s fun as an adult to meet characters too!!

Well this is going to be fun trying to fit in a suitcase!

In case you haven’t been to Disney before, be prepared for Disney merchandise to buy everyone. Walking along the streets to many of the attractions are booths and open stores that easily grab any child’s attention with bubble wands, Mickey hands, beautiful balloons, and every single stuffie you can imagine. And the best part is the exit to most rides, brings you directly into a store.

Gotta love Disney!

We left Hollywood Studio around 3:00 pm and headed back to our home away from home for a little break.

I was sort of hoping Tyson would forget about Mikey’s Laugh Floor as I felt we already had a full day but that would not be the case.

Once back in our house, Tyson quickly typed “Mikey’s Laugh Floor”.

I was very hesitant as our day at Hollywood Studios did not start well and was only saved by the kindness of a cast member however, there is not much I will say no to when it comes to the kids and their wishes.

So, we purchased a park hopper* and after a little break, two tired adults and one excited Tyson were back on our way to try park # 2 – Magic Kingdom.

I had forgotten Magic Kingdom was not accessible by simply driving and parking, so we had to board a ferry to get there. You can also take the monorail however that was not running at that moment. These modes of transportation are included in your park ticket.

As soon as we entered the park I booked a ride and I was pleasantly surprised to see that the wait times for all rides were very reasonable (anywhere from 5-15 minutes).

Well, to say that we ROCKED Magic Kingdom is an understatement.

We went on ride after ride, with little to no wait times between rides.

Tyson was delighted!

We did run into one little issue that required Guest Services again though.

When entering one ride, one of our tickets did not scan. The Cast Member allowed all of us to enter anyway however when we finished the ride, the ticket that did not scan was therefore “stuck” on that ride. Because one ticket was still showing as “booked” on the ride, we could not book any additional rides until the unscanned ticket was released.

Therefore, if a ticket will not scan you are better off trying again, as we did not save any time by getting on the ride as we then had to find Guest Services again and get the ticket released.

Well, that is a rap on my Disney World tips.

As the sun set and the park was closing, we headed back to the ferry to make our way home.

Despite how the day started, it was overall a huge success for Tyson.

He smiled.

He laughed.

He ate the fries.

He swayed back and forth to the music at the Frozen show.

He got upset but he recovered.

He did ride after ride and was always willing to go on just one more.

And he slayed the Buzz Lightyear’s Space Ranger Spin ride!!!!

He had a full day.

Arriving at Magic Kingdom. Although Tyson was happy, he was starting to get tired.

My partner in crime, always up for an adventure

I was incredibly proud of his growth, but more than anything, I was just happy to share in his joy.

His joy was my joy.

What the day perfect? No.

Are there things I would do differently next time? Absolutely.

But overall it was a magical day.

(I had planned to talk about Universal Studios here too but let’s be honest, I’m even sick of reading this at this point.)

You will find a summary of my Disney tips below. If you have any suggestions that I may have missed please feel free to share in the comments.

Up next …. Universal Studios

For Our Family Vacation – Part 1: Up, Up (wait, wait, wait) and Away click here.

Tip Summary – Prep Work

Download the Disney World app
Apply for DAS
Rent a stroller (you will thank me)
Watch YouTube or TikTok videos to become familiar with the parks before your visit
Review park guides
If you plan to travel when it is super-hot, plan your indoor attractions during the hottest part of the day
If you have a picky eater, review restaurant food selections ahead of time on the app
If you plan to use a physical ticket, purchase a lanyard to hold your tickets (having to haul out a physical card at each ride gets super annoying as the day goes on)
Review park layout maps and have a tentative plan of rides (Magic Kingdom is huge and you can waste a lot of time walking between attractions)

Tip Summary – Disney Park Day

Pack all the necessities (sunscreen, noise cancelling headphones, snacks, Band-Aids, change of clothes for emergencies)
Wear bright colors on your little ones so they are easy to spot in case they do manage to escape
Bring a refillable water bottle (most Disney concession stands give free water upon request and water fountains are scattered throughout the parks)
Freeze juice packs or bottles of water to keep drinks cold longer; these can also be used as an ice pack
Bring a fan and attach it to the stroller
Order meals/snacks using the app to cut down on waiting times
Plan a break midday
And if your day has gone a little sideways, talk to Guest Services, they truly want you to have a magical day

Our Family Vacation – Part 1: Up, Up (wait, wait, wait) and Away

For many neurotypical people, going to the airport brings a lot of anxiety.

Imagine how that would feel for a child who strives on routine and has general anxiety about anything new in their life.

Boarding a plane can be a daunting experience for those with autism, as the new surroundings and sensory inputs can be overwhelming.

I think for a lot of families with neurodivergent individuals the entire process is daunting – will we make it through security? will my child get on the plane? what happens if my child won’t stay in their seat? what if my child needs to use the toilet and won’t use the washroom on the plane? what if my child has a meltdown?

What if, what if, what if, ….

These are all real fears for parents of autistic children.

I feel one of the best ways to prepare your child is to be prepared yourself. And what better way to be prepared than with a list!

I love a good list for just about everything.

And I like to make multiple lists – things I need to do before we go (like apply for passports, DAS and IBCCES), things to pack for the flight (headphones, snacks, communication iPad, fun iPad X2, chargers, extra change of clothes), things to pack for when we get there, things I want to buy when I am there and not quite a list but a “Trip Note” that includes details related to our trip (booking numbers for flight, van rental, places of interest and any tips that I might forget).

Before travelling I always like to do some research into where we are going and if they offer any special programs for autistic individuals to make our participation a little easier.

Years ago, I applied for the Sunflower Program for Tyson through Toronto Pearson Airport. This program is an internationally recognized airport program that signifies to staff, by wearing a sunflower lanyard, that the person has an invisible disability and may require some extra help or additional time while travelling. (If you did not apply for a lanyard before travel you can check the information desk at participating airports, for example at Toronto Pearson Airport you can pick one up at the information desk at Terminal 1 and 3 or at the Lost & Found in Terminal 1.)

In Orlando Airport, they have signs indicating the Sunflower Program when approaching the pre-boarding screening, positioning you to a separate lineup.

The Sunflower program reduces your time waiting in lineups for security and customs and allows your entire party to preboard before everyone else can board the plane. For kiddos who have a difficult time in a lineup, this can be a lifesaver.

I am going to be completely honest with you now, but when travelling I make it a point to seek out any special privileges Tyson could receive.

This does not come from a place of me wanting to skip the line.

It comes from a place of needing to get through the airport security as quickly as possible with an underlying fear that Tyson may get impatient and escape my reach.

I know this may sound a little crazy, but with the way the world is now, I often worry about child predators and sex trafficker’s looking for their next victim and let’s be honest, a distracted mom with a special needs child would be the perfect victim.

(Sorry, I had to go a bit dark there, but I feel we always need to be aware of our surroundings and what the potential dangers may be.)

An excited Tyson (and mom) waiting to board.

Unfortunately, St. John’s International Airport in Newfoundland does not recognize this program (yet).

They have however partnered with the Autism Society of Newfoundland and Labrador to offer a tour of the airport for autistic individuals and their families. To avail of this service, you can email marketing@stjohnsairport.com or call (709) 758-8756.

In preparing Tyson for any new event, I always write a social story. (I had planned to upload the social story I prepared for Tyson but he has deleted it from his iPad.)

A social story is a simple story that provides information on a topic (in this case our trip) with details about what to expect. The hope is that it will help alleviate some of the stress associated with the new event. (Sidenote: St. John’s International Airport also has a social story you can download; it is fantastic with lots of detail and pictures.)

We chose a direct flight from St. John’s to Orlando and reluctantly chose 1 stop over for our flight back so I included those details in our social story.

Although a direct flight meant more air time, it reduced our overall travel time (or so I thought: spoiler alert) and I felt that would work best for Tyson.

When it comes to what stresses me out most about flying with Tyson it has always been getting through security more so than the flight itself.

When Tyson was little, I had flown several times with him and he was a good flyer. Now that he wasn’t contained in a stroller, I was a bit worried about physically keeping him in line when going through security.

For the most part, Tyson has little patience and people are often not kind when they see an eleven-year-old “acting out”.

Our first lineup was at the airline check-in. Although we had checked in online the day before (which I highly recommend), I had not received a boarding pass for Mark and was told he needed to see the gate attendant for some unknown reason.

Well, that reason was soon to be known as he was randomly selected for additional screening.

Fun!

And any children associated with Mark under the age of thirteen were also selected for additional screening.

Double Fun!

I proceeded to ask if St. John’s International Airport participated in the sunflower program, but they did not.

I was told that Tyson would need to remove his shoes, walk through the metal detector and have his bags undergo additional screening.

Meagan trying to soothe Tyson who was upset with having to remove his shoes.

No exceptions for autism here!

Although it was not an extensive additional requirement, it did result in Tyson having a complete meltdown and lying on the floor crying and screaming!

I could see out of the corner of my eye my loving husband giving me the “I told you this was a bad idea” look. (Backstory: I had convinced Mark to go on this trip two weeks before departing and basically had wore him down until he agreed.)

I could hear Lincoln grumble about how he hated to go anywhere with this family.

And I could feel the eyes of everyone behind me burning a hole in the back of my head.

What a great start to a family vacation!

I wanted to get in an argument with airport staff and scream at the other adults in the lineup but I knew none of that would help our situation.

I knew what Tyson needed was calm (or at least the perception of calm).

I bent down and asked Tyson if he needed a hug and then calmly told him he would get his Crocs back in just a minute. And that we just needed to get through this part to get to Florida and have lots of fun.

It seemed to work, eventually.

Despite being furious with the lack of empathy and consideration for how stressful this was for Tyson (and what a huge deal it was that we made it this far), causing a bigger scene was not what he needed at that moment.

Once we were through security and there was distance between us and the lineup of people, Tyson was fine.

When it was time to board, Tyson couldn’t hold his excitement and didn’t even want to wait for the rest of us to get our boarding passes scanned. Once seated on the plane, he said “Ready set go”, followed by “takeoff”. It was super sweet.

At about two and a half hours into the flight, I started to have my own doubts about this family vacation. When Tyson asked me how much time was remaining (for the flight) I said 3 hours, then when he asked again a few minutes later I mistakenly told him 3 hours.

Wrong response!

Once I realized that Tyson was accustomed to minute countdowns and not hour countdowns, I quickly showed him the flight path using the airline app and he was quite content when it said 2 hours and 57 minutes instead of the lame answer I gave him which was 3 hours.

Despite having ear pain and finding the noise on the plane much too loud, the rest of the flight was uneventful until a few minutes before landing.

At 600 ft above the airport, we unfortunately felt the plane start to ascend.

Yes, you read that correctly – Ascend!

Eventually, we were informed that due to thunderstorms we could not land at Orlando and would be landing at Fort Myers instead.

After a short detour to Fort Myers, we then proceeded to sit on the tarmac for two and a half hours, unsure of when or if we would be landing at Orlando. This was not part of my social story!!!!

If someone had told me this would have been our faith on our flight down, I probably would have backed out of the trip altogether.

Can you imagine being stuck on a plane with a bunch of unhappy adults and children (including some that were crying) and an autistic child who normally can not wait 2 minutes?

Miraculously Tyson took it all in stride.

I told him the plane needed to refuel and to him, that was a perfectly good explanation.

When he got a little restless a kind lady sitting ahead of us offered him her neck fan (note to self – add to the list for next trip). Sometimes it is the simplest acts of kindness that can be so appreciated.

Tyson enjoying the neck fan while waiting to deboard in Orlando.

I should add that one of the flight attendants (Rose) on the Westjet flight was also very kind to Tyson and told me if he needed a break from sitting in his seat, he could get up and walk the aisles when the seatbelt sign was off.

After what seemed like an entire day of flying, we finally landed in Orlando 4 hours later than anticipated.

For those who travel and rent a vehicle, just note that some rental companies offer what’s called “FastBreak” which allows you to skip the counter and get your vehicle quicker.

I wish I could report our flight home was less eventful than our flight down but when you get a text at 6 am indicating your flight is delayed by 8 hours and your 1 day of travel is turning into a stayover in Toronto for the night you know your travel day is not off to a good start.

Also – not part of the social story!

Unfortunately, we still needed to be out of our AirB&B by 10 am.

Despite trying to fill the day the best we could (Wild Florida Drive-thru Safari Park, McDonald’s, Target and Costco) by the time we arrived at the airport Tyson had a lot of energy to burn.

Who wouldn’t want to feed a giraffe when you got 8 hours to kill?

Within minutes of arriving at Orlando airport, I knew I needed to attach this kid to me. Luckily, I had borrowed a tether from a friend and despite a few strange looks from fellow travellers (now if I’m being honest what they saw was a very fast Tyson running through the airport, with a not-so-fast mom dragging behind him and a blue cord keeping us together), it did the job. Lincoln was mortified for both himself and Tyson! Sorry kid, safety first.

This tether was a life saver at Orlando airport. Thanks Heather!

We got through airport security pretty quickly (despite a slightly major passport mishap) and managed to get Tyson some fries and off we were to Toronto.

We landed sometime after midnight, and we were given a hotel voucher and were told our luggage would go onto St. John’s (which was unfortunate as I did not pack any essentials in our carry-on besides snacks and a change of clothing).

After about 4.5 hours of sleep and with tired and cranky kids, we arrived at the airport to go through the entire process again.

Customs in Toronto was super simple, requiring us to scan our passports and complete a form electronically before entering the Passport Officer lineup. Tyson was unable to stand still for the picture so a blur of his gorgeous little face was considered sufficient.

Upon taking my seat on the flight home, I realized that all our luggage was sitting on the carousel at Pearson Airport (insert many curse words) as our luggage was tagged mistakenly for Toronto instead of St. John’s.

Got to love travel!

At 1:30 pm on Thursday, we finally arrived in St. John’s safe and sound. Not ideal seeing we had left our AirB&B over 27.5 hours ago but we all survived it.

Eventually, our luggage did make it to us, despite one piece being damaged but the contents were there, which at that point was all that mattered.

If you made it to the end, thank you! Stay tuned – coming up next is all about the parks!

Don’t they look as fresh as daisies after only 4.5 hrs sleep!!

Tip Summary

Apply for a sunflower lanyard
Schedule a tour of the airport if available in your area
Write a social story about your trip
Pack snacks and electronics for the plane ride
Pack a change of clothes in your carryon (the tiniest spill of water on Tyson’s clothes means it’s coming off)
Check-in online to reduce airport wait time
Be upfront with airport staff about your child’s ability to wait and ask for accommodations
Request a preboard

Two Worlds, One Family

In January I took a day trip to Carbonear for a basketball tournament with my older son, Lincoln.

The next day, I took Tyson to an Exceptional Connections NL event and one of the moms asked me about the basketball tournament.

It was at that moment that I thought about how different my life is with each of my boys.

I sometimes feel like I am living in two separate worlds, each one never intersecting with the other.

The basketball tournament was great. It was nice to see Lincoln hanging out with his friends, independent and carefree.

I got plenty of time to chat with the other parents, sat down and had lunch at a restaurant (for those of you not part of a neurodiverse family you may not realize how rare it is to simply sit at a restaurant and enjoy a meal) and made a trip to the famous TNT store (it was all the buzz with the basketball moms).

I spent the entire day carting around teenage boys, cheering on the team and just going with the flow based on how the team was doing in the tournament.

My adventures with Tyson have never been ‘go with the flow’.

One always needs to be completely present in the moment.

Focused.

Prepared.

For years, I never left the house with Tyson without wearing sneakers and dressing in layers. I just never knew when I would need to catch him quickly and I don’t know what frustrated me more, the chasing or becoming overcome with heat.

Even now, I always wear flats when we go anywhere and I pause before I leave the door to ensure I am prepared with everything he may need – noise cancelling headphones, communication iPad, and goldfish – all of the necessities for a successful outing.

We could never just show up to a random restaurant without knowing what was on the menu, if the environment was too loud, and if the atmosphere was welcoming.

Before I could answer my friend, Tyson had disappeared (again). He didn’t leave the gym as I was close to the entrance but I could not see him.

Being at an event that is run by special needs moms, they instantly knew, without hesitation to look for him.

Each of them scattered without being asked and sure enough he was found – safe but hidden out of plain sight.

Reminder to self: you can’t have a conversation with someone and let yourself be distracted enough that you take your eyes off Tyson for a second.

There is no time for conversations when on duty.

Yet with Lincoln, I had spent the days chatting with other moms, browsing around some shops, and enjoying some great basketball.

It’s strange how different life can be experienced within one family.

These moms in neurotypical families have never experienced some of the things we neurodiverse families go through daily.

They probably have never thought about having to watch an eleven-year-old at ALL times.

They probably have never thought about carefully selecting footwear each time they leave the house, never knowing when they will be part of a fast pursuit.

They probably have never thought about going to a new restaurant for the first time and not finding a single food item their child will eat.

Despite all the extra that is required to support Tyson out in the community, it doesn’t bother me.

I am happy to try my best to adapt to what he needs on any given day for him to be successful.

It can be a lot of work, but it is worth it.

What bothers me, however, is how separate it seems.

One life with Lincoln.

One life with Tyson.

No intersection.

I would love to be able to take Tyson to one of Lincoln’s games and see him cheer on his big brother just like the other siblings do.

I would love for Tyson to bug me for more money for sour keys and Gatorade from the canteen.

I would love for me and Mark to be there for Lincoln without needing to have someone be with Tyson.

Is this too much to ask?

At this time, yes!

Right now, we need to meet Tyson where he is and honour what Lincoln needs as a fourteen-year-old teenager.

But who knows what the future holds?

I never would have guessed that myself and Mark would now spend part of our evening playing video games with Tyson. (I bet you can guess which video game we are playing 😉).

An unexpected ‘celebrate the small stuff’ moment.

And maybe one day Tyson will have the ability and interest to sit through a noisy basketball game to support his brother.

Who knows, we have been surprised before!

For those who identify as part of a neurodiverse family, do you relate? Feel free to share your experiences below.

Sidenote: Exceptional Connections NL is a wonderful inclusive family events group for the neurodiverse and disability community created by a group of parents to provide a connected, safe and welcoming environment. ‘All ages, all abilities, all exceptionalities’

A Reflection

Holidays and special occasions can be particularly hard for neurodiverse families (and don’t get me started on birthday parties).

They are an “in your face, up close and personal” reminder of your family’s struggles and how you are different from the everyday, neurotypical families.

Let’s take Christmas as an example.

Let’s be honest autism families, it is not our time to shine.

Everything is too bright, too loud, too peopley, too much for our kiddos.

So often, we retreat.

We don’t host the big family gatherings.

We don’t attend the fun-filled Christmas community events.

We don’t accept the invites to all the social gatherings.

And that in itself can be a bit of a bummer.

This year, leading up to Christmas I was feeling a little bah humbug.

And not following my own advice, I was over Christmas before it even started.

I completed all the tasks (the parade, the picture with Santa, the shopping, the cleaning and the decorating) but I was just not into it.

But during that time of making it through each task and each day, I missed something big and it wasn’t until a memory showed up on my Facebook feed that I took a minute to reflect on Christmas’s past.

The years when the gifts lay wrapped for weeks after Christmas was over.

The years when I had not a single idea for a present for Tyson in mind.

The years when the months leading up to Christmas focussed on a ‘program’ to teach him how to open a present.

This year, Christmas has been a reflection of his progress and not a summary of how we are different.

Tyson attended the Santa parade and excitedly waved at Santa.

He enthusiastically counted down the days to Christmas with multiple trips per day to our calendar.

He wrote his first letter to Santa.

Tyson printed his name and used his communication iPad to get help from Nanny.

And he showed us daily items he wanted for Christmas on his iPad.

On Christmas Eve he was so excited for Santa that he sobbed when he couldn’t initially get to sleep.

And Christmas morning was magical.

He was so excited to open presents and once he got everything opened, he then played with his toys.

This was a very big deal in our house for Tyson doesn’t often play with anything unless we are guiding his play.

His Beast Lab Shark Beast Creator was a big hit and he loved all his new ninja turtle figures.

And I know Christmas is not all about the presents but when you have a child who for years never cared to open a present or play with toys, it is a very big deal.

Seeing his joy filled my heart.

And unlike last year when January hit us like a ton of bricks, the transition back to normal life has gone great (am I really saying this out loud?).

And so it is nice to take a moment and count our blessings.

A magical (low-key, uneventful) Christmas.

A peaceful move in January.

Joy.

Progress.

For some of you reading this, you may not have had a magical Christmas.

It may have been filled with an overwhelmed, overatimulated child.

It may have been filled with secret wishes of beautiful Christmas moments that never got answered.

I am here to tell you it does get better.

And in reality, what Christmas looks like may not change but you will adapt and embrace what Christmas looks like for your family.

I could never picture a day that Tyson would enjoy Christmas – it was just too much stimulation for him. But by taking a lot of small steps to make the day and the entire Christmas season easier for him, has helped our entire family enjoy the holiday.

And now I feel like we are getting a second chance on the Christmas we missed out on when he was younger.

And how lucky is that.

The C Word

I have debated writing about this, but you know me, I tend to just put it all out there, so here goes.

You may have clicked on this post to figure out exactly what the ‘C word’ is or maybe you are a loyal follower and tend to read whatever I dribble on about.

Either way, here you are. I am sure you have a couple of guesses as to what the ‘C word’ is but it is certainly not what you are thinking!

The ‘C word’ has caused me many nights of lost sleep. And for many parents of children with learning disabilities, intellectual disabilities and neurodiverse brains, I’m sure I am not alone.

It’s the dreaded Curriculum.

The (Prescribed) Curriculum is “the education plan for the majority of students … and the first option for all students. It includes all of those courses prescribed and approved by the Department of Education and Early Childhood Development and listed in the Program of Studies.”

Or in other words, the detailed plan of what our children are learning in school from Kindergarten to Grade Twelve in each individual subject.

Unless you are an educator, I am guessing most people have never looked at or read in detail the Curriculum.

Let me tell you, it is very detailed!

If you would like to check it out, you can find the complete Curriculum for Newfoundland and Labrador here.

Now, back to the dreaded Curriculum and my sleepless nights.

Let me paint you a picture.

It was the end of Kindergarten and I was asked to attend a meeting with the Guidance Counsellor and Tyson’s Instructional Resource Teacher (IRT). We talked about the support he would need for the next year, what a surprisingly great experience Kindergarten had been and then the topic of the Curriculum was brought up.

Although happy as a lark to sit in the classroom with his peers, he was not able to keep up with the content of the Curriculum or the speed at which it was delivered.

Sigh.

As I sit there, I hear the words “alternate programming”, “implications for graduation”, “a big decision” and “time to think about it”.

Hold on a minute! Did I hear right? Were we talking about graduating from high school as Tyson was finishing Kindergarten?

I agreed that Tyson could not keep up with the Curriculum and that a program delivered at the speed he could keep up with was what he needed.

I agreed that a program designed for him and his current learning abilities would be best.

But are we talking about high school now?!?

Also, I needed to sign a document to indicate I understood that Tyson would not graduate with a high school diploma.

Sigh.

I remember coming home with my little notebook and starting to second-guess the decision that I did not officially make (yet).

I had written:

Prescribed Curriculum
Modified Prescribed Curriculum
Alternate Course(s) or Program
Alternate Functional Curriculum (4 domains)

One piece of paper with huge implications.

A family member said “but he is only in kindergarten; they don’t do much in kindergarten but play. I think it’s much too early to make this decision.”

Enter all the self-doubt in the world.

I could picture this grown-up version of Tyson, all tall and handsome with his beautiful curls questioning me as to why I did not believe in him.

A couple of days later I wrote the school team an email and said we were not ready to discuss alternate programming for Tyson at this time. In the back of my mind, I wondered what was the right decision for Tyson but I just couldn’t wrap my head around making a life-long decision now for a child that was 5 years old.

Back when I was in school, there were probably all sorts of options for students then, too, but all I remember was the regular academic class and, what we called back then, the special needs class. Some kids spent most of their day in the special needs class and others just “went out” for certain subjects.

Did I see that perhaps Tyson would be better suited to this type of learning environment? Absolutely.

Had I realized that this would mean he would not graduate with a high school diploma? Absolutely not!

Enter Grade One

Tyson was still not able to keep up academically as was made abundantly clear by his 1s and IEs (insufficient evidence to evaluate) on his report card. But I so desperately wanted to hold on to that peer interaction he was having in the classroom that we made no changes to Tyson’s Curriculum.

Tyson spent his Grade One year on the Prescribed Curriculum with accommodations. His accommodations included assistive technology (communication iPad, Chromebook) as well as alternate setting and breaks. He spent most of his day with his classmates but did receive some additional teaching time from an IRT for Math and English Language Arts.

In Grade Two, we had another discussion about Tyson’s education and we thought that perhaps trying him on a Modified Prescribed Curriculum would be our next step.

A Modified Prescribed Course (MPC) is “a course that maintains the intent of the provincially prescribed curriculum. However, specific course outcomes are changed, deleted, added or extended”. (Note: no more than 50% of course outcomes can be altered.)

We started with the core subjects of English Language Arts and Math. Although certain objectives of the Curriculum were removed, Tyson was still expected to conquer 50% of the outcomes.

Throw in COVID and home learning, we quickly realized that MPCs were not the best fit for Tyson.

(Nothing like playing teacher for the day to make one come to certain realizations!)

Shortly after, I was listening to a presentation at work.

(Just to give a little context for this next story: I work in the Discipline of Genetics (Faculty of Medicine at Memorial University) and on Mondays, at lunchtime, we have a journal club. This is an opportunity for researchers and students to present either their work or a hot topic in the literature. Our journal club had recently merged with Cancer and Development and so some of the talks were outside of my background knowledge.)

I joined the talk a few minutes late and missed most of the introduction.

I don’t remember the title or the student presenting.

What I do remember is that I felt like the presenter was speaking another language. Honestly, I could not understand the majority of what he was talking about.

At first, I was a little taken aback that so much of this presentation was going over my head but then I remembered that I did not have the necessary background to follow along and comprehend exactly what he was talking about.

And then, it dawned on me.

Is this what Tyson felt like when he was in class?

He was still working on addition but his classmates were learning about multiplication.

He was still struggling to physically print his name and his classmates were writing sentences.

I had insisted on keeping him in an environment where learning was either very difficult or impossible.

Poor little mite.

And it was all about me and my feelings.

And my guilt.

It was on that day that I finally had the courage to accept that Tyson needed additional modifications to suit his learning.

We then decided to switch Tyson to “Alternate Courses” for Grade Three.

What exactly is an Alternate Program or Course?

An alternate course is “a course that replaces a prescribed subject area or high school level course. An alternate course can be curricular (curriculum significantly different from the student’s current grade level) or non-curricular (outcomes that support student skill development).”

For Tyson, this means that a specialized educator (like an IRT) writes the objectives for his Curriculum based on his current knowledge and goals for the year.

For example, in Health instead of learning about the dangers of recreational drugs, Tyson may be working on street safety and common street signs. In Math, instead of working on multiplication, Tyson is learning two-digit addition and subtraction.

It is still very much academic-based but tailored to him.

Tyson continues in Grade Four to be on an Alternate Program for curriculum-based courses. He completes all courses in an alternate setting with an IRT and other classmates that require extra support.

And although I am at peace with our decision now, I don’t want to downplay the magnitude of getting there.

It took us over three years to set Tyson’s education path on an alternative plan.

There is unfortunately no crystal ball that can show us the future.

I don’t know if this grown young adult is going to be standing in front of me asking why I didn’t believe in him.

All I do know is that we made the best decision based on the little boy in front of us now.

And I don’t feel like I am holding him back anymore on a future that could have been but instead, we have set him free to learn and grow to his full potential.

It has been hard(er) sharing this part of our story but I thought it was important because there may be another parent out there struggling with thoughts and feelings about their child’s education. Hopefully, by being open and transparent it has allowed room in your mind to help sort through your feelings.

And for completeness, I just wanted to comment on the 4th option which is the Alternate (Functional) Curriculum.

This programming is based on 4 domains: career development, personal development, independent living and functional academics. And each domain is further divided into strands: Career Development (personal management, career exploration and awareness, career preparation and experience); Personal Development (citizenship, social development, communication); Independent Living (personal care, domestic skills, money skills and safety skills); and Functional Academics (reading, numeracy, writing and technology/computer skills).

You can find a copy of the Alternate (Functional) Curriculum Provincial Guide here.

Tyson’s Snack Cart in school. Innovative way to learn money, counting, addition and subtraction! Teachers have to be the most innovative people on the planet!

Restrictive, Repetitive Behaviours, Electronics and Skittles

For many years, our focus with Tyson has been increasing his communication by any and all means possible.

Generally, I have not given a whole lot of thought to Tyson’s repetitive behaviours as they are very much a part of Tyson’s being.

They are part of what makes him the boy we adore and strive to figure out.

However, restrictive, repetitive behaviours are very much a key component for an autism diagnosis.

When Tyson was little I never noticed the stereotypic behaviours – he did not line up toys, he did not repeat the same phrases, he did not rock back and forth or toe walk nor did he seem to be fixated on the same routine every day.

He would however spin around in a circle very fast. Toddler Tyson always seemed so happy when spinning – like he had stepped into a magical world that only he could see.

Now he seems to only spin in overstimulating environments.

Despite knowing this, I am still in awe seeing his feet move at the speed of light and with such precision, all while never getting dizzy. I always thought he would make a great figure skater.

Some of Tyson’s restricted behaviours have changed over time, visiting for just a short period before being replaced by something else.

Right now, he likes to have all the lights in the house off (even in the evening). This might last for 30 minutes or the entire evening.

In the past, he has been fixated on having all the doors closed at all times.

For a while, Tyson would touch his chest each time he turned the page of a book.

At one point, he would always say “ahhhh” whenever he took a sip of water.

Sometimes kids on the spectrum use repetitive behaviours to help regulate themselves. It can be calming when they are feeling stressed.

Other behaviours are a part of him just the same as his blue eyes or his messy hair.

For example when excited Tyson will jump up and down. The intensity of the jumping is equal to the intensity of the excitement.

Often when he comes downstairs he has a set pattern of movement. Instead of entering the living room, which is directly off the stairs, he will take what I call the scenic route and enter the kitchen and dining room first.

Most of these behaviours may be a little quirky but they don’t cause any issues in his daily living.

That is until lately.

I blame it all on skittles.

Yes, the colorful taste the rainbow candy.

Let me tell you about it ….

In the fall, Tyson got into watching commercials and for some reason unknown to me, one of these videos was scary to him.

The video in question is the Skittles commercial with Steve Perry and his Skittles portrait.

Tyson is terrified of this commercial.

The strange thing about it is that he will acknowledge the video is scary but still is compelled to watch it.

When watching, he will walk away from his iPad, squint his eyes, all while maintaining eye contact with the screen.

He started to bring his iPad to me to show me exactly what he was watching so I would say ‘if you are scared, you need to turn it off’.

Well, little did I know those simple words would result in a new restrictive, repetitive behaviour.

Tyson now feels the need to ask my permission for every show he watches, every time he fast-forwards or rewinds to a certain part, every time he decides to watch a new show or start a show over from the beginning.

Every. Single. Time.

Tyson asking for my permission to watch Despicable Me

Well, after a couple of days of this, I was about ready to pull my hair out. Can you imagine as a parent your child asking your permission (through gestures) for every show he watched?

For Tyson, who changes shows and rewinds and fast forwards like the weather changes here in Newfoundland, this can equate to as frequently as every 1-2 minutes.

It is as if he was stuck in a loop. He knows what he wants to do, but he can’t do it without asking me first.

So although as annoying as it was to reaffirm Tyson’s selection every couple of minutes I did not believe it was harmful to him.

I have found in the past that many of Tyson’s repetitive behaviours resolve on their own and in a couple of weeks or months he has moved onto something else.

However, this has not been the case this time. Tyson has been asking my permission for everything he watches since November.

I decided to get some expert advice, and the suggestion was if Tyson was only asking my permission perhaps redirecting him to someone else might break the loop.

It did not.

And despite additional advice to try ignoring his request and not provide an answer, I simply could not do that.

This is a child who has worked so hard to communicate from the moment he was born.

I remember when he was unable to point.

I remember when he was unable to tell us he was hungry or thirsty.

I remember when we practiced exchanging pictures of goldfish and juice packs and TV shows.

I can not ignore this child.

So, what happened next?

Tyson found these videos so upsetting that he decided to delete the YouTube app.

During that time, the repetitive question-asking trickled over into other areas such as when playing the Ninja Turtles Legends game on his iPad.

He would feel the need to confirm every move of these characters in the game.

When he would lose, he would get super upset. So we ended up deleting this app from his iPad too.

This would result in him asking for the YouTube app to be installed again and we were right back where we started.

Round and round we go, where we stop, nobody knows.

That is until I got some brilliant advice from a fellow mom at a parent support meeting.

She suggested instead of me verbally telling Tyson what he could watch, perhaps I should try writing was I was going to say on a piece of paper and handing it to him. Tyson can read so it was worth a shot.

So, on a piece of paper, I wrote – “Yes Tyson you can watch that”.

In the beginning, when I gave Tyson the piece of paper I would repeat the words. Then I started just handing him the piece of paper.

He was a little frustrated at first, but guess what, it worked.

On occasion, he will still check with me when watching a show and on occasion, he will need a reminder to not watch that Skittles commercial but we have gone from him coming to me every 1-2 minutes to perhaps 5-10 times a day. Much more doable. and much less restrictive to his daily living.

When in doubt about what to do, check with a fellow parent. Who knows what brilliant idea they will come up with!!!

What sort of restrictive, repetitive behaviours do your children engage in? Have you ever had to intervene? Tell me about it in the comments.

Dear Santa

Thank you for the presents you brought me last year.

This year I would like ….

What Dear Santa letter does not start like that?

Followed by a short (or long) list of all the treasures they hope Santa will bring.

Tyson has never written a letter to Santa.

In fact, for many years Tyson could not communicate one single item he wanted for Christmas.

Although Tyson was quite proficient to use his iPad to request food or drink or go somewhere, asking for specific presents was a little different.

Perhaps part of the issue for Tyson was that he never played with or had even a remote interest in toys.

On several occasions before his birthday and Christmas, we had an ‘unwrapping presents’ program in his ABA therapy.

Learning how to unwrap a present was a challenge as Tyson had some fine motor issues, which was paired with a lack of desire to see what was in the shiny wrapped box.

(For those of you wondering what an ‘unwrapping presents’ program looked like, it simply meant flimsy paper, with very little tape, maybe a tear or two in the paper to help things along and weeks of unwrapping a box every day.)

The problem was no matter how much practice Tyson had, we could not ‘teach’ him to be motivated to find out what was in the box.

I distinctly remember one year we tried exchanging a chocolate chip cookie for an opened present.

I can picture his little toddler body curled up in our blue oversized bean bag chair, and his plump hands slowly tearing off the paper, to reveal the present only for him to immediately drop it for the cookie, not giving the present a second glance.

Everyone that would come into our home would comment on the pile of unopened presents in the corner.

Poor Lincoln on the other hand was dying to know what was inside those boxes.

The new, improved version of me would like to think that if this happened today I would have just let Lincoln open them instead of making him wait until days after the tree came down and I couldn’t stand the sight of this sad pile of gifts in the corner of the room anymore.

I think what was harder than the gifts being left unopen was not knowing what to buy in the first person.

It was the same every Christmas – our family asked what to buy and me, his mom, had no idea what to tell them.

I felt like moms should know what their kids want.

How could I spend 365 days with this little boy and not know a single item that brought him joy?

I also hate to think about all the money we spent trying to spark Tyson’s interest – from trucks, and figurines to play-doh kits and expensive items geared towards autistic/sensory-seeking children.

We have more Melissa and Doug food play sets than I’m sure we have real food some days 🤣

I remember being at Walmart one evening and a little girl was asking her mom for the latest in toy. The mom was telling her it was too close to Christmas and perhaps Santa would bring it. The little girl was very persistent and next to crying and the poor addled mom was about to lose it, all while I was looking at the shelves filled with toys and couldn’t see a single item to buy my little guy.

I was heartbroken. I would have done anything for him to ask for just one toy.

I did not know at the time that I just needed to be patient.

I needed to give this little boy time to gain those communication skills.

For the first time at the age of nine, Tyson asked for items last Christmas.

And he quickly became a pro at asking different people for different items and reminding them at each visit of the specific book/DVD/figurine he had requested.

The only acceptable answer was yes, I will get you that for you for Christmas.

It’s incredible the simple joy of having a nonverbal child being able to express what they want for Christmas. And I feel it brought excitement and joy to our entire family.

I know there are some parents out there that may be experiencing what we went through for many years.

I know it’s hard.

And stressful. I know Christmas is not about presents, but when you have nothing to put under the tree, it’s stressful!!

I felt sad and guilty for feeling sad for many Christmases.

Don’t get me wrong, we had many great moments throughout the Christmas season.

But there is no easy fix to longing for something that at this moment you just don’t have.

Sometimes you just need to sit with your feelings and feel all the feelings.

It’s oddly ironic for the most wonderful time of the year, it is also the time when feelings of grief, sadness, and loneliness are most strongly felt.

What I can tell you is that no matter your family situation, there are always moments of joy to be found.

Surprisingly, this year Tyson is once again not asking for anything for Christmas.

I don’t believe for one minute this ten-year-old has everything his heart desires. What ten-year-old kid does?

Tyson has struggled with his communication over the past four to six months. He doesn’t use his communication iPad as often as he did and when he does communicate, he is spelling he requests using one or two letters, expecting us to know/guess what the word is.

I’m not sure if he is being a little lazy or developing his own shorthand language like teens when they text – idk, brb, lol.

But for some reason, his lack of asking for things for Christmas is sitting okay with me this year. I’m not sure if it’s because I haven’t had my normal stress-induced Christmas meltdown yet or by knowing his long Christmas list from last year has sparked ideas for what to get him this year.

Either way I am content knowing no matter what, spending Christmas with this crazy little family will bring me joy.

And for those of you reading this that are wondering how to support an autistic family through the holidays this year, here are some things to keep in mind:

Don’t put any pressure on children to eat the holiday meal or sit at the table if this is not the norm the other 364 days of the year (Christmas may be the time for miracles but not these types of miracles)

Make a plan for the holidays but know that flexibility may be necessary

Ask a parent for gift suggestions but be open to nontraditional items such as snacks they like (ie package of cookies or jar of peanut butter) or special interests they have (ie soil and seeds for gardening or utensils and ingredients for baking)

When in doubt, just be kind

Dear Santa,

Thank you for the presents you brought me last year. This year I would like for all the children without a voice to have a magical Christmas and to find one special item under the tree that brings them joy.

Trick or Treat

Does anybody else feel like Halloween has become the new Christmas?

People are going all out – the costumes, the elaborately decorated homes, the ever-popular haunted hikes. Back when I was in elementary school and we had our costume parade (remember those), I don’t recall anyone wearing head-to-toe purchased costumes.

And have you visited the Halloween store? It’s busier than Costco on a Saturday morning.

I’m not into the Halloween scene but I do enjoy driving around to see the decorations and I love to see all the kids in their costumes on Halloween night.

What are your Halloween traditions? Do you enjoy carving pumpkins? Do you give out the best treats (which are full-size bars in case you were wondering 🤣)? Do you dress up too?

There is this window of time when Halloween can be a lot of fun for families – that time between when they are excited to dress up and go trick or treating until they reach the age where they just wear a mask and would not be caught dead being seen in public with you.

When Tyson was a toddler we managed okay for the most part by pulling Tyson in a wagon but by the time Tyson reached age three, Halloween turned into a bit of a struggle.

Unlike many kids with sensory issues, Tyson had no issues wearing a costume, however he did not get the concept of Halloween nor did he have any interest in the treats neighbours were giving out.

He was overwhelmed by the lights and scared to death of many of the decorations.

After a short amount of time, Tyson was overwhelmed by the experience and needed to go home.

Doesn’t everyone take a book with them they when go trick or treating mom?

By the age of six or seven, Tyson was more willing to trick or treat but still didn’t quite get the concept. Whenever someone answered the door he would try to enter their house, especially if he could see or hear their TV.

And if they had a visible DVD collection, it was game over. He was coming on in and making himself comfortable.

Tyson also had struggles with holding the bag or more specifically opening the bag to allow treats to be dropped in.

Our main challenge however was managing the expectations versus the realities of Halloween with two very different children.

Letting go of what Halloween should look like and realizing that what works for one child does not work for another helped a great deal.

Remember parents Halloween is a rare celebration that requires very little effort from us with the promise of lots of fun for all.

For several years I carried a sign for Tyson that said ‘trick or treat’ because he could not verbally say it. He had no interest in carrying the sign himself.

Another year I got on the ‘blue pumpkin’ bandwagon as this was available to purchase in stores as a symbol of autism. The actual result of carrying around this blue pumpkin was having a lot of people (strangers) ask what it symbolized which was then followed by an awkward silence.

In our experience, all people have been extremely kind and do not question when your child does not say trick or treat or thank you.

They do not need to know that your child is autistic in the 30-second face-to-face exchange on Halloween night unless your goal is to bring autism awareness to your neighbourhood.

I say, do what makes you and your child happy.

Now that Lincoln has grown out of Halloween, Tyson is enjoying it – go figure!

For the past two years, Tyson has played an active role in picking out his costume. This has been a huge step forward for him in his ability to communicate his wishes.

He doesn’t try to enter people’s homes anymore, for the most part, well unless they got a spectacular DVD collection that he can see from the door.

And we have made it completely around our block – he doesn’t do every house but is happy enough to knock on most doors. Last year he was a little overenthusiastic with some doorbells.

What has changed?

Time.

Time and a little bit of practice.

For many kids on the spectrum, things outside the normal routine can be challenging. Preparing ahead of time for change can be helpful.

Here are some tips that have helped our family have a successful Halloween:

1. My first piece of advice is to always set realistic expectations. Planning to visit all houses on your street may not be reasonable.

2. And to follow up on that, know your limits. If you can see that things are starting to go downhill, end the night then and there, instead of pushing on.

3. For families with more than one child, having a backup plan can be equally as important. If you have other children that will want to continue trick or treating when your autistic child has tapped out, have a plan for this. It can be very disappointing for the other child(ren) if Halloween is over after 3 houses. This may mean arranging for your children to go with their friends’ parents.

4. If the idea of trick or treating in your neighbourhood is too overwhelming or too dangerous for those kiddos that like to run, perhaps plan to visit family and friends. Going somewhere familiar may be more accepting to your child and easier on you, the parent.

5. My kind hearted neighbour Madonna suggested to me one year for my little picky eater, to place treats Tyson did like at a few of my neighbour’s houses. Tyson doesn’t eat any of the typical chips, cheesies, chocolate or candies given out on Halloween night so receiving a treat that he did like might be just the thing to entice him to continue.

6. If your child doesn’t want to dress up, who cares. If anyone questions why the child is not in costume, you can tell them they are a disgruntled teenager. By the time they figure out what this really means (no costume), you would have already moved on to the next house.

7. Or if trick or treating is not something that your child would ever be willing to do, consider splitting the night with your hubby so you both get to enjoy some of the fun. Or if you only have one child, consider dressing up yourself to give out treats and make that your Halloween tradition.

8. Check out Halloween events in your neighbourhood that may be suitable to the needs of your child to get your Halloween fill. Some community groups are doing trick or trunk events and kid friendly haunted walks.

9. And if all else fails and none of the above suggestions work for your family, turn off the lights, help yourself to some of those Halloween treats (why are those mini bars just soooo tempting?) and call it a night.

For those reading this that may not understand the struggles many children may face with this holiday, I have some advice for you. If you are unsure what to do if a child or teen knocks on your door with no costume or doesn’t say thank you, it’s simple, just give them a treat.

It’s one night, it may have taken a lot for them to leave the house and participate, so just be kind.

Stay tuned for Tyson’s Halloween costume this year!! Shocker – it’s not a ninja turtle.

Happy Halloween Everyone 🎃

The Big Ten

Can I start by saying that for many years I hated birthday parties?

I hated throwing Tyson a party.

But I hated going to birthday parties even more.

Birthday parties have been like seeing the world, our world, through a microscopic – an up close and detailed comparison of neurotypical children doing neurotypical things and my child, who was neurodiverse and not capable and/or interested in doing any of those neurotypical things.

Play-doh.

Crafts.

Games.

And don’t get me started on the food.

Pizza.

Candies.

Chips.

And cake.

It was a reminder of all the things that Tyson could not do.

And it wasn’t just the activities or the food.

I remember taking Tyson to one child’s party in particular. She and Tyson were days apart in chronological age but years apart in every other sense.

I watched the little girl have fun with her friends, blow out her candles and excitedly open her presents, all while my child could barely manage to stay in the room.

The noise, the people, the expectations, were all too overwhelming for Tyson.

As I watched this little girl and her friends, I was so incredibly sad for what we did not have – a child that was laughing, eating cake, hyped up on sugar. A child that was present in the moment.

In the beginning, birthday parties were like having to mourn the diagnosis all over again.

It literally would take the good out of me for a couple of days following.

So for the sake of my sanity, I decided we would skip parties for a while.

And when Tyson turned five, I decided not to have a birthday party for him.

I felt like a terrible mom, as I had always had a party for Lincoln but I just didn’t have the emotional strength to do it.

You see, in my head, five was the big year, a milestone year.

It was the year that if Tyson was ever going to speak, he would need to speak by five.

Back when Tyson was diagnosed, I remember his doctor telling me that most autistic kids who speak would do so by the age of five.

Those words have never left me.

And in the early years, I really believed that Tyson would speak by five.

So when five crept up and Tyson was not speaking, it was a pretty hard reality to accept.

So in protest of five and all that five represented, I decided we would not have a party.

It’s hard for me to revisit that place because I have a different mindset now.

I have accepted what nonverbal autism means for Tyson and our family.

Tyson’s 9th birthday, he loved the party hat!

But for some reason 10 also seems like a milestone year.

I can’t put it in words but somehow turning 10 seems different than 9 or 8.

Double digits seems so much older to me.

No longer considered a little boy but the big ten.

But this year we are having a party.

A celebration of Tyson.

If I am being completely truthful, I am a little nervous about a big party.

For the past couple of years, we have had small parties with close friends, so there has been no pressure.

We have been sheltered in our neurodiverse world with parents just like us who understand and accept.

I’m a little worried that Tyson might get overwhelmed.

We have gone to a few parties recently but Tyson hasn’t stayed for the entire event.

Can we leave our own party early!?!

Either way, this sweet boy wanted a party this year with his classmates so we are having the party.

He is excited.

Many things have changed in the last 5 years, while other things have stayed the same.

He still won’t eat the pizza or blow out the candles on his cake.

He will probably get tired of the kids and adults and need a little break.

I’m sure everything won’t go perfectly but I know that this time I’m brave enough to try because this is what he wants.

Happy birthday to you sweet boy. I can’t wait to see what ten brings because the last ten years have been nothing but amazing 💜

A Letter to Special Needs Parents (Before the Start of the School Year)

Before Tyson entered Kindergarten I had so many worries.

I was afraid that he would be lonely and forgotten, that the other kids in his class would make fun of him or at the very least, ignore him.

I was afraid that no one would hear his ‘silent voice’ or that he would be too stressed in the school environment to use his communication iPad.

I was afraid that Tyson wouldn’t be able to tell his teachers if he needed to go to the washroom or if he needed help opening his recess.

I was afraid that they would not understand Tyson’s subtle cues when he needed a break or when he was upset.

I was afraid the teachers would be ill-equipped to teach a nonverbal child.

But my biggest fear played like a movie in my mind during the day and filled my dreams at night.

I was afraid, terrified actually, that he would escape.

An excited Tyson running into school on the 1st day.

For the weeks leading up to school, my mind would drift and I would think about imaginary phone calls from school telling me they had misplaced my child.

For those caregivers that do not parent a special needs child, you may think that my worrying was a bit excessive, borderline anxiety disorder even, however, these fears are all real possibilities in our world.

Leaving Tyson in the care of anyone but family was a very hard concept to accept.

Many families like ours have never left their autistic child in the care of anyone outside the home for more than a few hours, and now we are expected to leave them with strangers for 7 hours a day.

I had some much uncertainty about school that I decided to delay Tyson’s entry to school by a full year and when he did go to kindergarten, I insisted on partial days.

Dear Moms and Dads

I am here to tell you that although worrying is very normal, it can overshadow this very beautiful and natural part of growing up.

When Lincoln started kindergarten I was emotional but also very excited for him.

When Tyson started kindergarten it was a total different experience.

I was scared to death.

I would have preferred that he stayed home with me and Mark where he was safe.

But Tyson has learned so many things at school above and beyond academics, from turn-taking to active listening to simply tolerating sitting next to a classmate.

School has been one of the best experiences for Tyson for his personal growth and development.

Tyson learned how to print his first and last name for the first time in Grade 3.

Will it be all sunshine and rainbows? Of course not.

There will be issues to work through but children with extra challenges can have success in school when they are provided with the right tools and supports.

We have been blessed with a wonderful school family and so our experience may not be the norm.

I know many families like ours struggle with school and I would never want to dismiss that struggle.

When I think about the start of the school year, I think just as much about my friends’ kiddos and how hard school can be for so many of them.

And I also understand that the school environment is not for every child.

But if you have decided to send your little one on Wednesday, try to keep this in mind.

It’s not a sprint, it’s a marathon.

A very long 13-year marathon!

Why not start the school year with a dose of positivity and a little hope for the best?

Take a moment and enjoy this very special day.

Your kiddo will never be starting Grade (fill in the blank) for the first time ever again.

Take that picture (if you can get them to stand still long enough).

Give them a kiss and a hug and wish them the best day and truly believe it is possible.

It’s a new year and with that comes all sorts of possibilities.

Life is too short to worry twice!

There is nothing gained from worrying today about how the year will go because there will be plenty of time to worry when the s$$t does hit the fan.

And to the moms and dads who are sending their babies to school for the first time ….

I see you.

I feel your fear.

I understand your worry.

I wish your babies schools are provided with the resources they need, beautiful teachers who care about your child as much as you do, and classmates who care for them as their siblings do.

And one last thing, kinderstart is not a reflection of what kindergarten will be like. I promise 💜

A Summer of Good-byes

Last week we said farewell to our beloved speech-language pathologist (S-LP).

We have had numerous S-LPs over the years as Tyson has been in speech therapy since he has been 18 months old and they have all provided Tyson and me with a valuable skillset.

But there was something unique about Tyson’s connection with Ms. Carolyn that is hard to put into words.

There was an ease between them, like two friends who have known each other for years.

Her presence alone was regulating to him.

She made practicing communication look easy and I know firsthand how hard this can be.

And as a parent, she taught me so much from speech articulation to using play or videos to build on his communication, to more recently using augmentative and alternative communication (AAC). She was creative and full of ideas for everyday communication practice.

She was also a listening ear when I needed it and I truly believe deep down she willed for Tyson to communicate as much as I did. She was invested in him.

As we left her clinic I felt a little sad for Tyson (and to be honest for myself) and it got me thinking about how strange the world of autism is.

Our children make connections to professionals like neurotypical children make connections to family members.

Successful therapy relies on a connection but when the therapy ends, what does that mean for the child?

I’m not sure.

I don’t know how Tyson feels about many things, I certainly can’t pretend to understand the depth of his feelings about the professionals in his life.

This summer also marked the end of Tyson’s ABA (applied behaviour analysis) therapy.

Tyson has had support through Autism Services since his diagnosis in 2014. What this has meant for Tyson is that he has had a home therapist for 30 hours a week during the preschool years and 10 hours a week since starting school.

His home therapist, under the direction of a Child Management Specialist (CSM), has delivered specialized programs tailored to him to help his development in all areas of his life.

The focus of ABA is skill building in the areas of the core deficits of autism, and grows with the child as they grow and learn.

As an example, when Tyson was younger, he worked on pointing and responding to his name. Recently he has focused on learning to play board games and street safety.

Beyond that, ABA has provided Tyson with companionship in a safe, relaxed environment.

It is hard to believe that Tyson’s ABA therapy is over after all the years. The provincial government provides funding for ABA until the end of grade three.

As we all know, once a child reaches grade four, they are no longer autistic and therefore, must no longer require support. (Obviously, I’m not bitter with how aid is determined.)

But this post is not meant to focus on ABA or the lack of support for autistic children but to highlight the unique world our children live in.

Tyson had had only 4 home therapists in the past 7 1/2 years and has spent more time with his therapists than anyone else except for myself, Mark and Lincoln.

Just think about that for a moment.

You have this person in your life five days a week and then suddenly they are gone. It must be very confusing for a small child.

I never really thought about how this affected Tyson until his second therapist moved away.

I remember talking on the phone with a family member about Ms. Robyn leaving and Tyson plugged his ears and walked away.

Whenever there was any discussion about Ms. Robyn leaving or hiring someone new, Tyson would leave the room.

And now here we are, the end of ABA therapy.

For a child who can’t verbally communicate and has difficulty describing his emotions beyond happy versus mad, I’m sure it was a very confusing and sad time for him.

His friend was no longer coming each day to play and spend time with him.

During the summer our schedule is often a little different so I’m not sure if Tyson realizes that ABA is over forever.

Changes in routine are hard for Tyson, but this is more than a change. It is a completely different way of life.

For 4 years Tyson had ABA therapy 30 hours a week and since starting kindergarten he has had therapy after school every day.

One would think that after coming home from working hard in school all day, the last thing one would want to do is more ‘work’ but Tyson loved it.

If his therapist was a little late, he would get out his PECS binder, or more recently, his communication ipad, to inquire where she was.

For him, ABA was a time to read, learn and have fun.

And although I’m sure Tyson will miss the routine and the structure of therapy, I think what he will miss most is this friend who has been such a big part of his life.

Ms. Danielle was our first therapist; as parents, we were new to the world of autism and she had many years of experience as a therapist in a special school for children with disabilities outside the province. She was Tyson’s home therapist and first friend, but also his hairdresser, his teacher and his guide (and ours) to the world of ABA therapy.

She would often send me pictures and videos of Tyson so I could see what he was doing as I was mostly at work during therapy hours. It helped alleviate some of the working mom’s guilt.

I don’t think I would have gotten through that first year without her.

Ms. Robyn came to us in January 2016. I remember being so stressed over the Christmas break wondering if we would find a replacement for Ms. Danielle.

Ms. Robyn’s aura was warm, loving and patient. She quickly became like a second mom to Tyson when I was at work. He adored her.

Before she left her position, she wrote a booklet “All about Tyson” for her replacement with all the things he liked, disliked and needed for a smooth, happy day, It’s a wonderful keepsake and a great record keeper of how far Tyson has come.

Then there was Ms. Madison. It was our first time hiring someone so young (old enough to be her mother young) and I was extremely nervous doing so.

She brought an energy and enthusiasm that only young adults have. She was eager to learn, funny and brought a lightness to therapy. She proved to me that age didn’t matter when your heart was in the right place.

And then there was Ms. Mackenzie. Ms. Mackenzie had an easy going nature that was just want we needed. She was fun and outgoing, always up for an adventure. Her attachment to Tyson and his fondness of her was evident.

Tyson and Ms. Mackenzie attending a Halloween party at Easter Seals.

And I can’t talk about ABA therapy without mentioning Tyson’s CMS, Ms. Jennifer. She guided Tyson’s programming, bringing new ideas to his many activities. Above all, she was Tyson’s advocate, always ensuring he got the supports he needed.

Each of these ladies played a special role in Tyson’s life and we were lucky to have them for as long as we did. Collectively, they taught Tyson valuable life skills that have helped shape him into the awesome little guy that he is.

As I think back on our time which each of them, I can’t help but smile.

They were more than just professionals working with Tyson but were part of our family.

I’m sure many parents can agree, our own relationships with these individuals are different than most typical professional relationships.

They become our friend, our confidant, our person with whom we share our deepest worries and fears for our child. They are the person who gets our child like only we do.

Or for Mark, who he discusses meals, movies and restaurants with! 🤣🤣🤣

All kidding aside, we wish each of these lovely ladies all the best and send out a sincere thank you from the bottom of our hearts for all they have provided to Tyson!

Tyson and Ms. Danielle feeding the ducks.

We are now embarking on a new journey, one without ABA therapy for the first time in 7 years and are starting over with a new S-LP.

Lots of changes ahead.

But we are ready!

Tyson & the ER

When Tyson was very little, while walking up the stairs, he slipped and split open his chin and required stitches.

That event, before Tyson turned two, shaped all future visits to the Janeway Children’s Hospital emergency department.

In my mind, I can still picture him wrapped in a white sheet from the neck down as he screamed. His screams eventually went silent, and his lips turned blue from holding his breath, all while the doctor carefully stitched his gaping hole.

My words, however, do not accurately describe the extent of the trauma Tyson (and I) experienced.

When I think of all the poor choices I made as a mom, this one tops the list by a landslide.

At that time, I was new to the world of autism and honestly, I did not know any better.

I did not know that Tyson could have been given medication to help him relax. (When Mark returned with Tyson to have the stitches removed, he was offered this as an option by a different physician.)

I did not know that Tyson would never forget being restrained.

And I did not know that Tyson would forever associate the hospital with that traumatic event.

In the beginning, Tyson associated the entire building with that experience, which made going to our speech and occupational therapy appointments difficult.

As time passed though, Tyson would enter the building willingly, just not the emergency department.

For over 7 years, we have been working on repairing that relationship.

Part of that means me being a stronger voice for Tyson.

Having access to electronics helps Tyson to regulate in stressful environments.

Just last week Tyson woke at 2:00 am crying with what seemed to be an ear infection.

As Tyson is nonverbal and still working very hard on communicating, we can only guess that his ear was paining as he was pointing to his ear and wanting me to push in on it. It’s unusual for Tyson to cry as he has a very high pain tolerance so I knew something was wrong.

One of the hardest parts of having a nonverbal child is seeing them in pain and having to guess what is wrong.

I tried very hard to get Tyson to take some liquid Tynelol but unfortunately, his brain just did not allow him to swallow the pain relief.

For those of you that have followed along with our story, Tyson has an extremely restricted diet. Unfortunately, this does not apply to only food he puts in his mouth, but to any liquids or medications as well.

So after about 20 minutes of him trying to swallow the Tylenol and a floor covered in sticky green liquid, we gave up.

Fast forward to Monday evening and I noticed Tyson’s outer ear was covered in dried blood.

Mark thought I should take him to the emergency department to determine if he had an ear infection. And although I knew he was right, I was very reluctant.

I hate everything about going to the ER department – the waiting, the exposure to germs (COVID fear is still very real in my household) and the knowledge that this would be very difficult for Tyson.

My thoughts race to Tyson buzzing around a very busy waiting room, the blood pressure that needs to be taken during the intake, the armband that he needs to wear and of course, a successful ear exam.

Part of being on this road with Tyson and having a better understanding of his sensory issues has led me to become a more assertive mom.

When the nurse mentioned the blood pressure, I calmly and assertively said we were going to skip that part. She asked me if we should at least try and I surprisingly and bluntly said no.

I explained to her that I wasn’t trying to be difficult but thus far, on all our trips, no one had ever managed to get a blood pressure reading for Tyson (but a good few nurses had gotten a kick or two). The experience of putting the cuff on his arm makes him so agitated, that whatever they try to do next would be that much harder because he was already at a heightened sense of fear.

So we skipped the blood pressure. Luckily the nurse put us directly into a room and we did not have to wait long to be seen by a doctor.

But our positive experience did not end there for Tyson had the most incredible kind, patient doctor.

She talked directly to him, explaining that she was not going to hurt him and that she was going to use her special light to see inside his ear.

She let him see the instrument first, and let him help her hold it while checking his ear.

She spent a solid 30-40 minutes trying to see inside his ear, giving him lots of breaks. Each time her hand touched his face (to steady her hand), he would cry and move his head.

We tried everything to reassure him. He would grab her hand and put it up to his ear as he wanted her to check his ear, but once she touched the side of his face, his instinct was to push her away.

She was very empathetic and said to him several times, ‘I know this is hard for you’ and ‘you are so brave’.

She was able to rule out a middle ear infection (swimmer’s ear) and saw part of his ear drum which looked fine.

It wasn’t only her kindness or her patience that was remarkable but also her compassion and understanding.

I have found for the most part, that there is a lack of understanding of autism in general when visiting the emergency department.

But that day was different, it seemed everyone was just a little more willing to make it easier for Tyson.

Is this a positive change that is occurring within the healthcare system?

Has there been additional training to provide professionals with the tools and education they need to better serve the autistic population?

Or was this an isolated incident of a beautiful physician accommodating Tyson’s needs? (A sincere thank you to Dr. Woodland who went above and beyond for Tyson.)

Autism families, what has been your experience when visiting the emergency department or the healthcare facilities in general? I would love to hear all about your families’ experiences!

When Life Gives You Lemons

I don’t know about you, but my life philosophy has always been when life gives you lemons, make lemonade.

I tend to focus my thoughts on all the positives in my life and lately, there have been a lot of great things.

Tyson is doing great in school and more importantly, is happy to go each morning.

Lincoln is ‘living his best life’, enjoying being a preteen with little responsibilities, besides hanging out with his friends and playing basketball.

Throw in a piece of cheesecake here and there (and a Diet Pepsi of course, because what’s cheesecake without a Diet Pepsi), and that is enough to balance out the negative with the positive for me.

But lately, it hasn’t been enough.

Maybe that’s because I feel like I spend most of my day dodging lemons.

I recently started a new job (sort of) and so trying to maintain my already strained work-life balance has been difficult.

I can’t imagine what teachers are feeling right now, but I know I for one am so tired of getting kids up and ready for school. Getting Lincoln to the bus by 7:25 every morning has been painful. Two non-morning people trying to get ready in the morning is an awful combination.

It’s a good thing Mark and Tyson are the opposite of me and Lincoln, if not, I don’t think any of us would make it out the door in the morning.

And then fast forward to evenings and I am trying desperately to get Lincoln to finish all his academic tasks before the end of the year – can we just end it right here and call it a year?!?!

I’m a mixed bag of emotions – I can’t wait for Lincoln to be finished and I dread for school to be over for Tyson.

Tyson has had a stellar year. September means a new school year and a new school team. It always feels like starting over.

ABA therapy, which Tyson has availed of since he was two years old, is finishing up at the end of this month and that makes me a little sad.

Tyson learning how to build a tower in ABA Therapy

And I’m also unsure how to occupy Tyson all summer. One can not swim 8 hours a day.

We are also dealing with family health issues. Nothing too serious but also no end in sight.

Everywhere I look I see a problem that needs fixing, a concern that someone should be worrying about or a task that is overdue (did I mention I haven’t filed my taxes yet; send help!)

Does anyone else feel this way?

I feel exhausted!

And done!

So why I am sharing this with you?

It’s not for pity or even empathy.

It’s for acknowledgment!

It’s to say out loud, that it is okay to be a little sour from time to time and have yourself a little pity party for one.

It’s okay to acknowledge that sometimes life can be tough and the attitude that ‘it could be worse’ is not helpful to anyone!

And so I thought, if I feel this way, I’m sure there are others out there that feel it too.

So I’m sharing this with all of you to give you permission to have moments of acknowledgment when life hands you an entire basket of lemons.

It’s okay to feel you have been given too much!

So here’s to sitting with our lemons and puckering our sour faces from time to time.

Inclusion

Inclusion is defined as the practice of equal access to opportunities and resources.

But in everyday life what does it look like?

Is simply having a child with exceptionalities present in a setting with typical peers inclusion?

No. Not unless there are supports in place for the child to thrive in that setting.

It’s surprising, but even activities geared towards children with special needs may not necessarily be inclusive? We have ‘tried out’ several special events for autistic families and have had to leave because they missed the mark on what our child needed to participate.

And let me tell you, nothing leaves you feeling defeated quite like an event geared towards autistic children and it does not work for your child. It makes you wonder where do we fit in?

So let me tell you about real inclusion and the magic that is happening in Tyson’s grade three classroom.

Let me start by saying I have always been a little skeptical when it comes to classmates including Tyson?

I don’t mean to be negative but I have seen firsthand kids walk past him and not even acknowledge him with as much as a wave or a smile.

I get it. It’s hard to make the effort each and every day when the child on the receiving end does not reciprocate.

So even when his teacher ensured me all the kids loved him and were so kind to him, secretly I sort of doubted it. There … I said it!

Recently, Tyson went to a classmate’s birthday party at Get Air and when we arrived, each student that ran by him said hi. It made me a little emotional and I could feel the tears welling up.

For parents not in this world that we live in, they may not get the significance or even understand how much ‘hi’ meant to this momma.

Tyson does not have a typical childhood – he does not have kids come over after school for a play date but is in therapy each day until supper time. He does not have friends knocking on the door asking him to come out to play and he has never been invited to another child’s house.

And I’m not telling you this to feel sorry for him or sad, as he is a very happy little boy. His life is just different than many other children his age. And so other kids saying hi and acknowledging him as just another little boy is kinda a big deal to me.

Back to the party ….

At one point as the kids were jumping and bouncing everywhere, Tyson made his way to the surfboard suspended on a rope apparatus. And guess what, another student went over and joined him on it. And then another student. They were all happily playing together.

And they were all chatting away to him, even though they understand he can not speak back.

This was truly one of the happiest moments in my life. These kids see him and accept him for who he really is.

This year, one of the goals in Tyson’s ISSP was for him to increase his overall use of his communication iPad and to express his thoughts (opinions, interests, likes) using his device. In school, this could simply be saying “hi (insert classmates’ name)”.

Partway through the year, it was decided to help foster this communication, a student in his class would verbally ask him a question and he would respond using his iPad. To “set him up for success” (school buzz phrase) we planted questions that we knew Tyson could answer.

Side note: answering questions is very difficult for Tyson and for many children on the spectrum. This is a skill we have been working on at home, in therapy and in school for several years and it’s still a work in progress.

After brainstorming with his lovely teacher, we decided to change it up.

So for the past couple of months, during the morning routine, Tyson and two other students are given a topic (ie preferences for activities, TV shows, seasons) by the teacher and everyone is using the communication iPad to respond.

Not just Tyson.

Not just his teacher.

But everyone in the small group is speaking using the communication iPad.

Simply brilliant!

Tyson and his classmates using Proloquo to talk about their favourite after school activity.

Tyson is beginning to learn how to have a conversation as his classmates model conversation using his device.

The other children are working on their typing and spelling skills, all while learning how to use a program designed for nonverbal individuals.

But the learning that is occurring in this grade three classroom is beyond academic – the kids are gaining an understanding of alternative ways to communicate, how much effort it is required for Tyson to participate in a conversation, and how to be a friend and include someone who is a little different than them.

And they are all, Tyson included, working on patience and turn-taking.

And during this time, Tyson is getting to know his classmates and they are getting to know him. An opportunity that would not present itself, without this initiative.

This was clearly articulated when Tyson missed school due to illness and upon his return, his desk with filled with cards each student had made that showed they truly know and care for him.

Cards Tyson received from his classmates.

When we changed Tyson’s curriculum at the beginning of the school year, resulting in him spending most of his day in small group setting with an Instructional Resource Teacher (IRT), my biggest concern was his lack of opportunity to spend time with his neurotypical peers.

Tyson still joined his regular classmates for the morning routine, along with music and physical education but it was not the ideal time for working on social and play skills. So when Tyson’s homeroom teacher suggested that he come back early from lunch*, to spend some time in the regular classroom, to say I was elated was an understatement.

*(Tyson has come home for lunch every day since kindergarten. He did try briefly staying in for lunch once a week a couple of years ago and it did not go so well.)

So after Easter, we sent our little guy off to spend the full day in school with the idea that half of the lunch break would be spent in the regular classroom for lunchtime play.

These kinds of opportunities can only happen when you have a teacher that truly understands how key these experiences are for Tyson.

So for the past couple of weeks, Tyson has been spending some time ‘playing’ with his classmates.

For those of you that don’t know, Tyson has never had an interest in toys. We had worked on play for years in ABA but it was always really challenging for him.

And when Tyson is playing, he requires 1 on 1 support to help him.

So during lunchtime, two kids are selected each day to play a matching game or put together a puzzle with Tyson.

To be honest, I didn’t have high hopes.

A change in routine, coupled with doing a non-preferred activity, sounded like a bit of a disaster to me.

But it has been going beautifully.

Each day I get a note from his teacher telling me what they played and how it went. And from what I am told, the children are enjoying it too.

Tyson and his classmates playing a matching game at lunchtime.

I’m not sure if these little children realize what they are doing for my little boy but I am truly grateful.

These boys and girls are truly inclusive to Tyson.

It’s not a place.

It’s not a feeling.

It’s an action.

I hope these experiences in this grade three classroom playing with a little boy with serious communication delays and social impairment, forever leave an imprint on the hearts of these children well into their adult lives.

And to the teachers (Ms. Randell-Dawe, Ms. Samson, Ms. Toope) and the student assistant (Ms. Loveless) that make this all possible, I could write an entire post on each and every one of you. You have shaped Tyson’s year beyond measure and for that, we are grateful.

Tyson and his classroom teacher Ms Randell-Dawe.

The Nonverbal Part of Autism

In my opinion, one of the most challenging aspects of autism for both the child and the parent is the deficits in communication.

These deficits can take many forms and can range from mild to severe.

For some individuals, it may mean little to no verbal communication.

For others, communication may mostly be in the form of echolalia, repeating commonly heard phrases from those around them, or a favourite TV show.

Some kids may have no issues with the verbal production of speech but use limited words when speaking or have difficulties with expressing their thoughts or answering questions.

Impaired communication is one of the three core deficits present in autism.

What all of this means is that important questions often go unanswered.

How was your day in school?

Are you thirsty?

Are you feeling sick?

Why are you sad?

Tyson is considered nonverbal and can verbally only say a few words. He does have some sounds which sound the same to us but may have different meanings to him.

Have you ever thought about all the different uses of language? There is requesting, greeting, sharing, protesting, complaining, commenting, expressing feelings, providing information, conversing, directing, asking for help, clarifying and the list goes on.

I would estimate 99% of Tyson’s communication using his iPad is requesting. The list of requested items might change from food and books to TV shows and a never-ending list of DVDs but the message is the same, ‘I want …’.

If I ask him what he had for lunch, he often can’t answer.

If he is sick, he has difficulty telling us exactly what is wrong.

If he is upset, believe me, we know it, but often don’t know why.

He does not share details about his day or comment when he sees something new or ask questions when he is unsure.

Back in 2014 when Tyson was diagnosed with autism spectrum disorder (ASD), nonverbal autism was not part of my future vision.

Family members would excitedly tell me about their dreams where Tyson had big conversations with them.

I have never had those dreams.

I long to hear his voice, even if it’s an imaginary one in my dreams.

Does Tyson have these same desires?

Does he long to express himself?

Does he speak in his dreams?

When Tyson was younger I would google nonverbal autism. What I discovered was if an autistic child was going to speak, it would be by the age of five.

Five seemed to be the magic number that would determine his future.

This is no longer believed to be true, as children may start speaking at any age, even into adulthood.

Despite googling nonverbal autism many, many times, I always believed Tyson would speak, we just needed the right intervention, the right speech therapy, the right engagement, the right therapist.

And time.

Time would solve everything.

But Tyson has been in speech therapy since he has been 18 months old.

That’s a lot of time.

And it has come with a steep financial cost.

At one point, Tyson was receiving two different types of speech therapy and it was costing us as much as our mortgage.

For those of you not part of this world, you may not understand how much-needed services like speech therapy are provided to children like mine.

Before entering school, children are eligible for speech therapy through the health care system, in our case, at the Janeway Children’s Hospital but because of the intense volume of children requiring services, there is a waitlist and limited resources available.

So while we waited for the availability of a speech-language pathologist (SLP), we did private speech therapy. Once accepted into the Janeway, Tyson was entitled to 2 separate blocks of 8 weeks.

Imagine 16 sessions to help your child learn to speak.

It’s mind-blowing actually.

Tyson practicing ‘mom’.

And then once your child enters school, you are then dropped from the healthcare system and are picked up by the SLP for the school.

As you can imagine one SLP that is shared between schools can not provide the adequate care required.

For kiddos like Tyson, that require intense intervention, the school SLP acts solely as a consultant to his school team and would not see Tyson regularly to ‘practice’ speech.

So we have continued to take Tyson to private speech therapy since he has been 18 months.

And although his verbal speech has not advanced, his communication has.

Many individuals on the outside may not see the value of 8 years of speech therapy but I would not trade a minute of any of it.

Before therapy, Tyson was trapped in a world in which only he was present.

He had little to no communication of any form.

He did not respond to his name.

He did not understand us when we spoke to him.

And he did not share anything with us.

His communication has come a long way.

It’s a work in progress and probably always will be.

I truly believe in my heart if he did have the ability to speak, he would have lots to say – scripting from television shows, singing his favourite songs, and telling us what he wanted to order from Amazon.

He is a big lover of music (right now Sky Full of Stars, Natural by Imagine Dragons, and Bohemian Rhapsody which he can spell, by the way, are his favourites) and sometimes ‘sings’ along using his sounds.

I have accepted the nonverbal part of autism but every now and then it hits me like a ton of bricks.

The other night at the top of the stairs he gestured for Mark to come up.

We have been trying to push Tyson to use his communication iPad more, despite knowing perfectly well what he wants.

It was then I said to him, ‘do you want dad? You need to ask dad to come?’

Tyson responded with ‘ba-ba’. (Ba-ba is Tyson’s word for me, the ma-ma).

‘Oh, you want mom?’, I asked.

He said ‘Ba-ba’, as he pointed to Mark.

And it was then it hit me, he had lost the ability to say dad.

Tyson at 4 years of age practicing dad.

Over the years on this autism journey, Tyson has lost and gained the ability to say multiple words.

Damn apraxia.

It’s a never-ending cycle.

But dad and bye have been two constants – the two words he could always say.

And now one of them was gone.

It’s hard.

Very hard.

But it was a good reminder that we need to do our daily practice again.

5 words, 3 times each.

Tyson doesn’t enjoy it. Neither do I. But it’s necessary.

Sometimes I get sidetracked, shift my focus, sloppy, lazy – whatever you want to call it. This is a reminder that I can’t do that when it comes to his speech.

The reality is he can’t use his voice to communicate his basic needs and wants, so should it matter to me that he can’t say dad?

It’s just one little word.

I’m not sure, but it does.

It bothers me to my core.

The goal for Tyson has always been communication, to provide him with the tools he needs to express himself.

And that is why we purchased the Proloquo app to help him achieve this.

And so now it’s time to shift our focus in his weekly speech therapy appointments.

We are going to focus on his AAC (augmentative and alternative communication) or in other words, using his communication iPad with his speech-language pathologist.

The goal is communication, in whatever form.

And for the first time in many years, I feel excited. It’s a new path. One that I did not expect us to be on but here we are.

And I know we will get there, as I have a feeling he has a lot to say.

Stay tuned ….

Tyson texting me using Nan’s phone while in St Bride’s for a sleepover.

Spread A Little Kindness

February is the month of love.

Stores are filled with red hearts, chocolates, and oversized teddy bears professing their love.

There is Valentine’s Day and Pink Shirt Day.

Let’s not forget it’s heart month and congenital heart defect awareness week in early February.

February = love = ♥️ ♥️ ♥️

So on that theme, at the end of the month, many schools around the province and across the country, ask students to wear pink as a symbol to spread a message of kindness and to end bullying.

Many individuals, especially children and teens, experience bullying, and children with disabilities are no exception.

I could tell you all about our experiences or stories from other families but I don’t care to spend any more energy on negativity.

I firmly believe what you send out into the universe, comes back to you.

So I am choosing to send out our ‘happy’.

Tyson is a lucky boy, who is blessed with much love and kindness from our family and friends.

Tyson’s cousins and Lincoln’s friends are just the most amazing little people to Tyson.

Tyson’s younger cousin, Kylie, giving him a push.

However, today I would like to tell you about the many times we have been blessed with kindness from strangers.

I would guess many of these people don’t even realize just how much these small acts of kindness make to our day.

We often run into issues when we leave the house and it’s no surprise that Tyson has difficulty waiting.

I avoid long lineups as much as I can and as Tyson is getting bigger, it is getting much harder to keep him safe when he decides he has had enough of a situation.

With age, grows expectation for behaviour.

People often don’t see a little boy with autism, trying his best to navigate what is a stressful environment. They see a nine-year-old misbehaving.

Lincoln’s friend Riley always includes Tyson. Seen here holding the bucket as Tyson collects all those ninja turtles figures at the bottom of the pool.

One trip to Dollarama, while waiting what seemed to be forever, Tyson grew impatient. So as a distraction I said to Tyson let’s count to 100 and then it will be our turn.

Listening to numbers can be very soothing for Tyson, so I started to count.

As we got to about eighty, I realized we would not get to the checkout by the time we reached one hundred.

So I stalled, talked slower, repeated a number or two, and even threw in a ninety-six and a half, ninety-seven and a half.

And then we reached 100.

There was one person ahead of us.

The lady promptly turned around and said ‘you can go ahead of me’.

I politely said that’s okay, as she was an elderly lady and she had also been waiting in the lineup, just like us.

And she said to me, ‘that sweet boy has been patiently waiting. That’s fine. You can go ahead of me.’

It was a simple gesture but I was so relieved I could have kissed her.

A simple act of kindness.

And then there was the young man working at Chapters who looked to be in his early twenties.

Again, another lineup story. (Did I mention Tyson hates lineups?)

We were waiting to pay for our books and Tyson was getting impatient. He ran from the lineup and tried to escape the store, books in hand, a couple of times before we got to the cashier.

There was crying.

There was hitting and screaming.

At that time, Tyson would not hand over the books so I would hold them up for the cashier to check them in from across the counter.

Tyson had left that part of the process twice.

I was sweating, red as a beet in the face, and just wishing the whole experience was over.

It is really hard to have an audience of onlookers when your child is having a hard time.

I could feel those adult eyes burning into the back of my head, eyes that were judging my poor parenting skills.

When we finally got the books checked in, the cashier said to me, ‘you were so calm. You did a great job’.

His comment filled my heart with happiness.

This young man could have been upset that we holding up the ever-growing line, he could have been annoyed with Tyson’s lack of manners but instead, he chose to be kind to a mom and kid that were having a hard time.

And then there was the young man at Swiss Chalet who offered to carry my takeout to my car when he saw me struggling with holding Tyson’s hand and the bags of food.

Another simple act of kindness.

Tyson enjoying sliding.

And my last story is my favourite.

It was a beautiful Saturday and I decided to take Tyson sliding.

This was two years ago and Tyson’s first year to enjoy sliding for more than 10 minutes.

Tyson was getting more independent, going down on the slide by himself. (Although I still had to run down the hill to retrieve the slide each time 😩).

Tyson spotted some older kids on the other side of the hill and noticed they were going faster and further than him.

He took off running and decided he was going to use their slide, seeing it was much faster than his.

Of course, I was a bit worried as the boys were older and Tyson doesn’t have any verbal skills to politely ask for permission.

Let me introduce you to a young boy named Logan, who immediately offered his slide to Tyson.

I politely declined and told Logan that Tyson had his own slide and won’t be able to hold onto the handles of this slide anyway.

He then offered to go down the hill on the slide with Tyson. (Please note: this was pre-COVID times before everyone was on high alert when within 6 ft of another human.)

A few minutes later, when Tyson was ascending back up the hill he decided to park his little butt right in the middle of the kid’s snow ramp.

One of the other boys made a comment, and this wonderful kiddo told his friends that they were being mean.

He also told his friends that they would be waiting for Tyson to make his way up the hill and that no one would be hitting their slide into him.

Later, Logan apologized for comments his friends made.

Can you imagine a kid apologizing for comments his friends made?

There are all kinds of people in this world, and having a child with a disability means we have been exposed to all kinds of comments from kids that have been less than ideal.

During those times, I have never heard a parent correct or even acknowledge their child’s comments, yet here was a kid correcting his peers.

And do you know that I don’t even remember now what the comment was?

It is not part of my memory of that day.

I remember a blue sky, a happy Tyson, and an amazing young boy whose kindness touched my heart.

“How do we change the world? One random act of kindness at a time.”
Morgan Freeman

My challenge to each of you is to spread a little kindness this month.

It doesn’t have to be a grand gesture.

Sometimes, something as simple as a smile can change a person’s perspective on their day.

And if you are in the sharing mood, let’s fill the comments of this post with random acts of kindness you have been a recipient of. Sharing could inspire someone else.

Happy love month ♥️

Christmas, the COVID-19 Vaccine & Autism

The week leading up to Christmas Day is my favourite time in the entire year.

Yes, it’s hectic with the decorating, shopping, wrapping, and cleaning but the excitement in a house when children are waiting for Santa is magical.

We started our Christmas week in a very unusual way this year but it was truly the best Christmas gift we could have ever received.

Tyson got his COVID-19 vaccine.

For many families, the approval of the vaccine for the 5-11 year old group was cause for celebration.

But the amazing part was not getting the appointment but the fact that this wonderful nurse was able to administer the vaccine.

Every fall both my kids receive their flu vaccine and up until this year, there has never been an issue.

Well …. If I am being honest there are always issues, but nothing we can not handle.

There was the year we thought going to the very large and crowded Paradise Youth and Community Center to receive the vaccine was a good idea. And there was the year Tyson pulled the needle out before the nurse finished administering the flu shot.

But we got through it and more importantly, Tyson seemed fine.

I’m not sure if the trauma of going to the Janeway Children’s Hospital and needing staples after splitting open his knee this summer has made him super sensitive to any medical person getting within 6 feet of him but when we got Tyson’s annual flu shot in October, things did not go well.

And by not well, I would rather give up junk food for life than have to go through that again.

I am going to spare you the details but it completely traumatized Mark, left me feeling defeated, and who knows what it did to poor Tyson.

For some reason, whenever something goes wrong (with Tyson) I always blame myself!

Why did I not anticipate that Tyson would react this way?

When we saw that Tyson was getting upset, why did we not just go home?

Why is “what I should do …” only come to me after it’s over?

In hindsight, we should have left the flu clinic before Tyson became completely hysterical in anticipation that he would need to get his COVID-19 vaccine just a couple of months later.

When Mark and I got in the vehicle the first thought that crossed both our minds was, how in the name of god was Tyson ever going to be able to receive his COVID-19 vaccine??

We can’t enter a building and wait in a lineup for hours (who I am kidding, we can’t wait ‘minutes’).

We can’t keep Tyson 6 feet away from those around him while we wait in these lineups.

And then there was the part of actually administering the shot because all three of us didn’t want to go through what we went through with the flu vaccine.

Lucky the vaccine clinic at Mundy Pond had procedures in place for families like ours which included waiting in our vehicle until the nurse was ready, and a private room to administer the vaccine.

And that was the start of our Christmas week which was a blessing in itself.

We also took in lots of Christmassy activities like going to Merry & Bright at MUN’s Botanical Gardens and had our annual walk in Bowring Park on Christmas Eve.

And we managed to see the movie Sing 2 in the theatre before everything shut down. (Tyson had been asking to see this movie since mid September.)

The days leading up to Christmas were magical.

Tyson’s anticipation for Christmas this year was contagious.

His excitement and joy were like a fog, it just engulfed everyone around him and one could not help feel the Christmas spirit.

It was especially nice to see Lincoln taking in his brother’s happiness. He would talk to Tyson about Santa and presents and how many more sleeps there were. It was beyond sweet.

And this was by far Tyson’s best Christmas.

He opened all his presents on Christmas morning which has never happened before and he seemed happy with the gifts he received.

He understood that not all the gifts were for him and didn’t rip open every present in sight, even though his desire to do so was intense. And he willingly handed out family members their presents, even though his presentation was similar to what one would expect from the Tasmanian devil.

Overall, he was happy, enjoying Christmas as any child would.

In the scheme of things though it was a very different Christmas. We only saw immediate family and we did not get together with friends, trying our best to keep our contacts low.

Then New Year’s Eve came and we broke our own rules of consistent bedtime and let Tyson stay up until the midnight countdown.

And then things kind of went to shit after that (excuse my language).

It took several days to get Tyson sleeping again. One night at 3:30 am he was still awake. Sleep issues are the WORST!

On January 2nd Tyson declared Christmas was over and wanted all the decorations removed.

Using his communication iPad he said ‘down down Christmas’.

Me, being hopeful and not wanting to let Christmas go quite yet, as the COVID-19 case numbers started to soar in our province, thought maybe we misunderstood his message.

As Mark and I discussed exactly what down down Christmas meant, Tyson then said ‘Christmas over’, directed me to the Christmas tree, hauled off an ornament, and handed it to me.

It was official.

Christmas was over – at least in our house.

And things have sort of been off the rails since.

Tyson was excited to go back to school and this may have been some of the motivation for wanting the Christmas decorations put away. I am guessing he was thinking once Christmas was over, school returns.

However, school reverted to online learning due to the pandemic just as it did in every other province. Tyson was not excited about online learning.

With the change in routine came numerous interesting and challenging behaviours, reminding me of Lincoln’s terrible twos stage.

He started doing naughty things to get attention: putting goldfish in Mark’s water, throwing the dog’s toys behind the TV so she could not play with them, taking Lincoln’s hat, and running away with it.

He was also in a foul mood, waking up each morning cranky, screaming and lashing out at all of us throughout the day.

We are now in our 3rd week of January and he still hasn’t settled.

The lack of routine during Christmas, compounded with the changes in school, has had a major effect on him.

Tyson is now back in school but school is not the same as it was before Christmas, as most kids are learning virtually at home.

Tyson doesn’t like change. He likes things to be the same.

The school looks different with so few students and staff, it sounds different and his day to day routine is different.

I don’t know if he misses his classmates or just the routine of seeing them, I am hoping the former.

This week is starting out as a better week.

We are taking it day by day.

Every day can’t be magical.

And every day isn’t filled with challenges either.

But we take them all as they come.

Breakfast with Santa. Cutting down a Christmas tree. Our first movie as a family since Tyson was a toddler. The Santa Claus Parade in St Bride’s.

These are the kind of lists I love.

Small steps. Progress.

The sum of which equals to a wonderful Christmas.

PS January – I won’t be sad to see you go!

Surviving Christmas (Tips for Autistic Families)

It’s the Most Wonderful Time of the Year! (Can you even read this sentence without singing it?!)

Neighbourhoods lit up like the Hallmark movies.

Mailboxes filled with Christmas greetings.

Trees covered in ornaments passed down over the years.

Beautifully decorated homes smelling of Mr. Clean and homemade fruit cake.

(Well, maybe I’m pushing on the imagery just a tad on that last one. Anyone who knows me knows there is a slim chance of coming to my home and being greeted by the smell of homemade Christmas cakes and cookies.)

My favourite picture of the boys with Santa

The Most Wonderful Time of the Year!

That’s what it’s supposed to be, right?

The most wonderful time.

The reality is though, Christmas can be hard for many people – those experiencing grief, those estranged from loved ones, those unable to come home for Christmas.

Christmas can also be hard for many autistic families.

We all want the time with family and friends, the beautifully decorated house, the freshly baked cookies for Santa, the perfect gift.

The expectation of Christmas is bigger than Christmas itself.

Christmas is filled with so many traditions – for some, it’s church on Christmas Eve, for others it’s having all the family over for Christmas dinner.

But for many autistic families, these Christmas traditions may be out of reach.

Many autistic children struggle with change, whether to their routine or simply their surroundings which are now covered in Christmas spirit.

They may not be able to participate in many of the traditions families look forward to like breakfast with Santa or the Christmas parade.

They may not ‘do well’ when they have a house full of people, even when it’s family.

So, what should we do?

Bar up our houses, turn off the lights and wait for Christmas to be over.

It’s a thought …. (just kidding)

But we may need to make some adjustments to help our kiddos get through the holidays.

Here are my tips for surviving Christmas:

Community Events

Choose the Right Activity

For us, at this moment, going to a crowded event does not work. Tyson doesn’t do lineups and doesn’t like noise, so it can be challenging to take in most community events. So we tend to go for drives to look at the Christmas lights or take a stroll through Christmas lit parks. There is no pressure on Tyson and we can leave whenever we need to.

Seek out your Local Organizations

This year for the first time the Autism Society offered a breakfast with Santa at the Pantry. There were only three families in the restaurant at any one time and the staff was very accommodating. We were even allowed to bring in our own food for Tyson. And the best part was the other families there were just like us. They didn’t stare or get upset when Tyson decided to lie on the floor and cry. They get it! And in case you have never been, the food at the Pantry is delicious.

Tyson using his communication iPad to say ‘Santa’.

Be prepared

I always pack snacks that Tyson will like, his communication device so he can tell us when he wants to go home, and noise-canceling headphones if he gets overwhelmed. And I always dress for success. Me dressing for success is comfortable footwear that I can easily run after Tyson in, if I need to and layered clothing. I get easily irritated when I’m overheated so I would never wear one of those ugly Christmas sweaters taking Tyson anywhere, ever.

Try, try, again

Just because an event didn’t work for your family in the past, that doesn’t mean you won’t have success this year. If a particular Christmas event or tradition is important to you, then keep trying.

Change your Perspective

Success may mean different things for different families. Attending a Christmas party for 30 minutes could be a great goal for a child who has difficulty leaving the house. Make realistic goals. And stick to your plan.

Tyson deciding he is ***done*** with pictures at Bowring Park.

Family and friends

Navigating family at Christmas time can be particularly challenging. You want to spend time with them but having a house full of people can be overwhelming for your child.

Get-Togethers

Have a plan and let individuals know your plan ahead of time. If you can see that your child is nearing a meltdown, don’t wait for it to happen, let your host know you have to leave. If family and friends are aware in advance, then there is no surprise if you are heading out the door just as they are taking up the meal.

Meals

Our family gets Tyson and so they know he is not going to eat turkey dinner just because it’s Christmas Day. He eats the same chicken nuggets on Christmas Day as he does the other 364 days of the year. However, not all autistic families share this level of understanding and acceptance. Having a conversation with family and friends may help individuals understand and so there will be no surprise on the day of. I would also suggest bringing your child’s own specific food/snacks so there is no added pressure on your host.

Gifts

What does one get the child that does not play with toys for Christmas? The struggle of buying Tyson presents for Christmas has been painstaking real from the age of two until last year. Now he shows us new books and DVDs he wants every single day.

Family can especially struggle with this as traditionally children get toys for Christmas. But a present for a child does not have to be a toy. It should be what that child likes, however unusual that may be. Or for kiddos who have no interest in opening gifts, maybe suggest contributing to an activity the child is enrolled in.

Set up a schedule

Give everyone who plans to see you on Christmas Eve and/or Christmas Day a time to drop by. Yes, it’s awkward and uncomfortable to have the conversation as they are your family but it will save you from having 15-20 people all in your house at the one time.

Or if you are not quite brave enough for that, then …

Control the Day

We used to have everyone come to us but we have learned it is better for us to come to them, that way we can control the situation. When Tyson is ready to leave, we can go. Or sometimes we go in two cars so one of us can leave with Tyson and the other parent can stay with Lincoln.

Home

Do ‘less’ Christmas

If your child thrives on their surroundings looking the same at all times, just imagine how overwhelming Christmas can be. The tree, the lights, the decorations – it’s sensory overload.

I will put up my tree but leave my other decorations to later in December. In recent years, I have also put out less of my Christmas collection. You can also leave an area of your home Christmas-free for when your kiddo needs a break from all that Christmas spirit.

Tyson ‘taking a break’ from Christmas Day in his Christmas free zone.

Consistent bedtime

As hard as it can be to maintain a schedule during Christmas, keeping your routine of consistent bedtime and wake-up time will help your child. The last thing you need is an overstimulated AND tired child.

Self

Mourn what you miss

It’s okay to miss Christmas traditions and feel a little sad because you are missing out. I’m always super cranky around the time of the annual Downtown Santa Claus Parade because I hate missing it but I know, we just can’t do it as a family right now. The last time we went to the parade Tyson was in a stroller. But I let myself feel the feelings and then I move on. It’s okay to feel angry and sad sometimes about what we are missing, that’s what makes us human.

Fill your Christmas Bucket

I always make it a point to do some things that I enjoy to put me in the Christmas spirit. Nothing quite gets me in the spirit as out and about shopping in stores looking for the perfect gift all while listening to their Christmas music blaring. For others, this might be getting their hair or nails done or going out for a nice meal with friends. This year I attended a Christmas performance at the Arts and Culture Center.

Hey moms and dads, please share your tips for helping to get your kiddo through the holidays? I would love to hear them.

He Ain’t Heavy, He’s My Brother

Lincoln loved Tyson from the moment he was born and has always been proud of his big brother role.

When you think of brothers, especially like my two boys who are close in age, you probably think of days filled with playing in the dirt, ramping around on the floor, watching movies curled up on the couch together, and getting themselves into mischief.

That, however, has never been our experience.

When the boys were younger, they never played together in the traditional sense.

Lincoln would try to get Tyson to engage with him, but Tyson just didn’t have the skills to drive toy trucks, manipulate play-doh or play figurines, even if they were ninja turtles.

I bet many of you find to hard to imagine kids needing ‘skills’ to play, but they do.

Parallel play.

Pretend play.

Cooperative play.

When you have a child that doesn’t play, you end up learning way too much about something that most parents never give a second thought.

Although we worked for many years to help Tyson gain skills in the play department (and bought all those fancy Melissa and Doug toys), he never liked it and only treated it as a task he had to complete.

So we focussed on more simplistic ways for Lincoln and Tyson to connect.

We helped the boys engage in chase, with Lincoln always being the chaser. Sometimes Lincoln would sing songs to Tyson as Tyson loved familiar nursery rhymes. It was a way for Lincoln to get Tyson’s attention, even if only for a minute.

We have had ‘Lincoln and Tyson play’ programs in ABA over the years to try and help foster a relationship between them.

It was really hard – Lincoln put in so much effort with his brother, but Tyson gave very little, if anything, back.

By the time Lincoln was five and six, Lincoln’s role changed from big brother to protector.

He was often worried about Tyson’s safety or afraid some kid might pick on him.

When we would go places together, he would worry about him running away and follow him everywhere.

We would often have to remind Lincoln that we were the parents and he could just go play but wherever Tyson would go, Lincoln would be two steps behind.

I remember going to Bowring Park to an outdoor movie once and Tyson took off running. Lincoln went running after him, with me slowly running behind them both, and when Lincoln caught up with him, he tackled Tyson in an attempt to catch him. A stranger commented on how he shouldn’t be so rough. Little did she know that he was protecting his brother.

Lincoln would also scold us on our parenting skills. He would remind us that Tyson had autism and that it was hard for him to understand. Talking about making you feel like a shitty parent when you got a 6 year old giving you parenting advice.

We did not want Lincoln constantly worrying about his brother.

We did not want Lincoln to feel responsible for Tyson.

We wanted Lincoln to just be a carefree little boy.

However, having a sibling with special needs did (does) have its advantages.

As Tyson’s disability became more visible, Lincoln was learning to become a more compassionate little human.

Lincoln’s compassion was not just for his brother, but for all he encountered who were a little different, like Tyson.

As Lincoln got older, we were also conscious of the idea that Lincoln’s friends may be unkind to Tyson or tease Lincoln about his brother’s disability.

Although there were a few small incidences in school, for the most part, what we have seen is the opposite.

For a bunch of preteen boys, it’s amazing to see. I have seen Lincoln’s friends swing with Tyson in the backyard, cheer him on to jump into the pool, and give him fist bumps whenever they meet.

Part of being Lincoln’s friend is accepting Tyson for who he is.

Things are slowly (at a snail’s pace) starting to change between Lincoln and Tyson.

They now fight, which is awesome.

I know most parents probably wish their children would stop fighting but fighting is a very normal part of being a sibling (right B.J.😉)

Lincoln no longer hands everything over to Tyson just because he wants it, and he has learned that just because Tyson has autism that doesn’t mean Tyson has free rein to do whatever he wants.

Tyson is now the one that wholeheartedly adores Lincoln.

In the morning he will often go into Lincoln’s room and just stare at his face.

We think it’s adorable. Lincoln, not so much, especially Saturday morning.

Tyson will also look to Lincoln for help, especially if he knows me and Mark already said no.

Their relationship is evolving and that is all that we can ask for.

I would love to hear from families like ours, how do your children interact?

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Tip Summary – Prep Work

Tip Summary – Disney Park Day

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Community Events

Choose the Right Activity

Seek out your Local Organizations

Be prepared

Try, try, again

Change your Perspective

Family and friends

Get-Togethers

Meals

Gifts

Set up a schedule

Control the Day

Home

Do ‘less’ Christmas

Consistent bedtime

Self

Mourn what you miss

Fill your Christmas Bucket

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