Featured

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.

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!

First day of Grade 3

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).

1st Day of Kindergarten

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 that 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.

Tyson and Ms. Madison

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.

Tyson and Ms. Robyn

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.

First hair cut at home by Ms. Danielle

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.

Post hospital visit reward.

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. 

Merry & Bright, MUN Botancial Gardens

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. 

Christmas Eve in Bowring Park

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.

Christmas morning

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.

Tyson telling us ‘Christmas over’

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.

Online Learning Day 1

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.

Building a Fort.

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.

Santa Claus Parade in St Bride’s

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.

Festival of Lights in Bowring Park

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.

Downtown Santa Parade 2015

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.

Me and Lincoln at Merry and Bright

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?

Now I Lay Me Down To Sleep

It’s 11:00 on a school night and Tyson is still awake.

It’s going to be one of those nights when sleep doesn’t come easy.

I hate those nights.

I absolutely love my sleep and I am quite crusty (that my word for contrary) without it. I don’t need much, a good 6 hours works for me.

I am only actually talking about sleep because right now we are going through a little (and hopefully short lived) sleep regression.

When Tyson was little, sleep was one of our biggest issues.

Mark had to hold him tightly in his arms and rock him to sleep, every single night. It would take a very, very long time for him to settle.

And then he had to make it upstairs and put him down in his crib/bed without him waking.

And after all that, he would often wake at 1 or 2 in the morning and be awake for hours.

It was awful.

This was the norm 4-5 nights per week.

It was like having a newborn except he wasn’t a newborn.

I was severely sleep deprived. Mark was severely sleep deprived.

Tyson however, didn’t appear sleep deprived. In fact, he was a bundle of energy.

During this time, Tyson was also into the habit of what I called ‘stripping beds’. He would go into our room and take all the blankets off the bed and get between the fitted sheet and the mattress.

Tyson under the fitted sheet.

I remember one night going to bed really late after staying up to watch a TV show (bad idea) and finding my bed naked. I could have cried.

Tired, needing sleep and a personality that requires a fully made bed does not work.

We tried everything to get him to sleep.

He had a very specific bedtime routine, no electronics after 7, consistent waking time each morning. Nothing helped.

Nothing helped until we found melatonin.

For years I was hesitant to give it to Tyson each time a professional suggested it and many suggested it.

It took driving home from work after getting two hours of sleep the night before (yes, two hours of sleep) and completely cutting off two separate vehicles to finally admit something had to change.

If I felt like crap on a daily basis, then surely Tyson must have felt the same.

Introducing melatonin give us all our sleep back.

We still have sleep issues but it is minor compared to the years from ages one to five.

Anything that alters Tyson’s routine results in a sleep setback.

We are now on ‘it gets dark earlier’ change in routine.

Soon it will be the daylight savings time change.

Then after that comes Christmas, where the lack of routine plus the stimulation will cause sleep change.

And in between all of that, is the going to St. Bride’s with Nan and Pop for the weekend change in routine.

This is why we try as much as possible to stick to a consistent wake time every morning, weekday or weekend.

It sucks to wake a quiet, sleeping child on the weekend but it is necessary if we want him to go to bed that night.

Tyson will also struggle to fall sleep the night before an exciting event – first day of school, birthday, anything out of the ordinary.

First day of school this year he went to sleep on time but was up at 4 am for the day.

According to a recent study (Souders et al; 2017) 60-86% of children with ASD have sleep difficulties.

That’s a lot of tired moms and dads.

Our body naturally produces melatonin in a circadian pattern with increased levels at night and relatively low levels during the day.

Several studies have also found considerably lower levels of melatonin in autistic children.

If being an autism parent is not hard enough … now we need to do it on broken, irregular sleep.

Now don’t get me wrong, melatonin is not magic (even though some nights it feels like it). My friend calls is liquid gold.

For Tyson, it calms his body enough so he can fall asleep.

Getting ready to wake Tyson for school.

In order for melatonin to work for Tyson all the other factors need to be in place which consists of no electronics directly before bed, black out curtains, melatonin given at the same time each night, consistent wake time in the morning and more recently a compression sheet on his bed.

It’s all part of the process.

Sometimes we are not great with taking away the electronics on time and then wonder why Tyson is having trouble falling asleep.

All these steps are necessary for a good nights sleep.

For me, part of the reason why I struggled in deciding to give Tyson melatonin was because it almost felt like I was failing.

Failing as a parent.

Why could I not get my child to sleep?

Why could I not just deal with the lack of sleep, isn’t it just a part of parenthood?

For parents out there that are in a similar situation, this is my message to you – let go of the guilt.

Sleep is not a luxury but a basic biological need, just like food and water.

Our bodies need sleep and during sleep important biological processes occur such as body repair (Google it, it’s true).

Moms often put the well being of everyone before themselves but in order to be our best, we need to make sure our basic biological needs are met.

Melatonin is not the answer for every child, but finding a solution to your child’s sleep issues is necessary for both their health and well-being and your own.

And it’s okay to need help from others to make that happen.

Disclaimer – I’m not a medical professional therefore parents should seek medical advice before introducing any type of supplement.

Gratitude

I was recently reading a friend’s blog about her gratitude practice and it reminded me of when I use to keep a gratitude journal.

It has been years since I actually wrote in a journal however in my head, I always have lists of things I am grateful for in my life.

Sometimes it is as simple as getting a green light and not being late for somewhere I need to be.

Yesterday I was grateful that I managed to bring Tyson to check the mail and take the puppy for a walk at the same time and it was not a disaster. We have been working on this and up until yesterday, it was not going so well.

I am also known to be grateful for a bite of chocolate and a diet Pepsi when the house falls silent at the end of the night.

And of course there are the big things on the list like my family and extended family.

My family and Mark’s family have always been so supportive of us and of Tyson’s needs, that I never really thought of others not having that.

However, there are some families that do not have that support, that unconditional love, acceptance and understanding that autism families need.

I realize how lucky we are that they are always just a phone call away.

Just a few of our family supporters.

But there are two areas of my life that I haven’t talked much about but I am eternally grateful for.

The first being my autism moms or AUsome moms, as we like to call ourselves.

PIECES Parent Support Group – Where it all began

They are moms, just like me, raising kiddos on the spectrum.

They have the same struggles as we do and they celebrate the same nontraditional joys like getting your child to wear socks, trying a new food or going to a restaurant.

These are the people I turn too when I have a bad day and equally as important, they are the ones I call when we have reason to celebrate.

They are always there with a listening ear, an empathetic word or affirmation that ‘sometimes life sucks’.

These girls are my people. They get me, they get us.

And the best part of sharing a similar journey is that their successes are my successes.

It is so uplifting when having a hard day to get a message from one of the moms that her little girl tried a new food or so and so said a new word.

I call it my “double joy”. I’m happy for the mom and the kiddo that had success but it also gives me hope that one day we will be celebrating a similar accomplishment.

Escaping the Fairies at Escape Quest

And I love whenever one of us is having an issue, because let’s be honest, there’s never a dull moment, the first thing we do is tell each other about it.

The support these ladies provide to each other is just simply amazing.

For the most part, these friendships started through a parent led autism support group. For the past four years, me and a couple of other moms have been facilitating a parent support group through the Autism Society for families with young children on the spectrum.

As we continued to meet as a group, our friendship grew and now I am blessed with having these amazing women in my life.

Isn’t it funny how something that was started to help others, is now bringing so much joy to my life?

Picnic at Ferryland

Which brings me to my next reason to be grateful, my work life.

I think one of the most daunting tasks since Tyson’s diagnosis has been trying to maintain a work life balance.

For many working moms that I have spoken to, the stress of trying to juggle appointments, therapies and calls from school to pick up your child, is often too much while working full time.

Many moms have had to leave their place of employment because the actual time demands of ABA therapy does not allow them to hold a 9-5 job.

Lucky for me, I have been blessed with an amazing employer and co-workers.  

My boss’s philosophy is family comes first. And he truly means it.

There are many days in the run of the month when I have to send a message letting my employer know I will be late today or have to leave early because I am needed at home.

I realize not everyone is so lucky.

On top of a wonderful, caring boss, I have these amazing woman that I am so lucky to call my co-workers.

What else is there to do on a lunch break but cut, laminate, and apply Velcro for Tyson’s visuals?

Many people in their situation might feel resentment towards me, when I am often coming in late or having to leave early for an appointment.

Not these ladies. In fact, they will often remind me of my biweekly home visit with Tyson’s senior therapist and tell me I better get going or I’m going to be late.

They will take over my lab work if something comes up at home that needs my attention.

But the most wonderful part is that they truly care about me and my family.

They will listen to my many stories about what is going on with us now. They’re always checking in on us, asking about how Tyson is making out in school or what was the outcome of an appointment or therapy session.

They know as much about Tyson as I do (lol).

I feel blessed to be surrounded by such caring and compassionate people.

So, with thanksgiving weekend upon on, I would love to hear what are you grateful for? Please share your thoughts in the comments below.

Just Say Hi!

As we head into a new school year, I wanted to reshare something I wrote last year at the beginning of the school year.

It has been a very common experience for us, as an autism family and I’m sure for many other families that are a little different like ours.

When Tyson and I are walking into the school, and we encounter our peers, we often see that you do not know how to engage with us. Here is what these encounters look like for us:

Parent: Do you know that little boy?

Child: Yes, that’s Tyson.

Parent: Say hi!

Child: He has Autism. He doesn’t talk.

Parent: *deer caught in headlights*

Most are probably hoping that I didn’t hear.

But I already know Tyson has Autism! No surprise there!

So what is the right thing to say, dear parents caught in Autism headlights?

“Hi.”

For some reason because Tyson is nonverbal, people also think he can not hear or understand.

I get that this can be hard or confusing for kids. They say hi, but he doesn’t say hi back.

So, before we all get back to the school drop-offs, and the trips to the playground after supper to soak up the last minutes of summer, can I make a suggestion? Let’s have a conversation with our children or students, explaining that just because someone doesn’t speak, that doesn’t mean they cannot hear or understand.

Just last week, we were at the playground and Tyson went running toward the swings. One little girl told her friends he has Autism, but she did not acknowledge him or speak to him. This has happened so many times to us when out in the community.

We are lucky that we have encountered very few people who are mean to Tyson.

But we have also encountered very few who are inclusive.

A simple “Hi” can mean so much.

If you want to work toward better inclusion, if you want to help us feel less alone, if you want Tyson to be treated just like any other kid, “Hi” is a great place to start!

The attitude of inclusion is contagious, and I know you can help it catch on!

Please share!

#justsayhi

When It’s Not Autism


I don’t know about you, parents, but do you find now that your child has an autism diagnosis, whatever medical issue arises is attributed to autism?

Tyson has had acid reflux since about 8 weeks old. It is chronic and persistent.

When he was younger, he was medicated for it many times but it never went away.

My family doctor treated his symptoms but eventually our developmental paediatrician recommended we see a specialist.

“It’s probably related to autism.”

“Kids with development issues sometimes ruminate.” (Rumination is the act of voluntary regurgitating food and is known to occur in individuals with developmental delay.)

Each time Tyson was seen by the specialist, this is what he would say.

However, I didn’t see it quite this way.

What if it was not “autism”?

What if it’s chronic acid reflux?

What if, this was truly causing him discomfort and pain daily?

He can’t tell me he is in discomfort, so how do I know for sure?

So the last time I took Tyson to see the specialist, I said, ‘are you sure?’.

Are you sure it’s rumination and not reflux?

Because we would not let a neurotypical child suffer like this.

So …. he agreed to do a scope.

I’m not sure if he agrees with me or if he is just tired of listening to me, either way we need to get to the bottom of this.

I also thought Tyson needed prescription glasses.

He squints, a lot!

“It’s probably autism”, I was told.

“Visual stim”, I was told.

But it may not be.

How can a child learn in school if he can not see properly?

So I took him to an optometrist.

Before going, I researched which optometrist was autism friendly.

Yes, we parents of autistic children need to check these things.

Not everyone has the skills necessary to help our kids. (Not everyone treats our kids with respect and dignity either.)

We found a lovely optometrist who is excellent with working with children on the spectrum.

I suggested we start with a visual acuity test, as Tyson knows his letters and can use his communication iPad to identify them.

Tyson could identify the beginning letters but as the letters got smaller, he got it wrong or stopped answering.

The optometrist suggested we dilate his pupils in order to know for sure if he had a vision problem.

So, as difficult as that was, we did it.

The optometrist then shune a light in his eye while holding a special lens up to his face. Depending on how the light reflects back, indicates if a visual issue is present.

“No prescription needed.”

Honestly, this optometrist was wonderful. He was patient, caring and treated Tyson with respect.

But when I questioned him on why he got the ‘smaller’ letters wrong and he as often squinting when watching TV, he blamed autism.

“Maybe he is having trouble focusing on the letters. Maybe he likes how it visually looks when squinting.”

However, I was not convinced.

The school had mentioned that Tyson would not copy his agenda from the board but if written on a piece of paper and put on his desk, he would type it into his chromebook. They thought he should get his eyes checked.

At home, Tyson was always stealing Lincoln’s glasses and wearing them.

One evening he even requested on his communication iPad “Lincoln bath glasses”. He knew when Lincoln got a shower, the glasses were unattended and he could get his hands on them.

The real sign however, was one evening when he screamed at a Sobeys reusable bag.

You see, Tyson does not like to see his schoolbag when he gets home from school. He goes to great lengths to hide in, if it is left out.

It is common for him to come running down the stairs, screaming, grab the schoolbag and shove it in the drawer. Same with the lunch bag and Lincoln’s schoolbag. I guess he realizes if Lincoln is going to school, so is he.

However, from the top of the stairs he was mistaking a reusable Sobeys bag for his schoolbag. He got to almost the bottom step before he realized exactly what it was.

So ….. once again, back to our amazing developmental paediatrician who listened to my concerns and referred us to the Janeway for a second opinion.

I have to stop right here and just tell you, how none of these things are easy.

I don’t want second opinions.

I don’t want to be on the list for new departments at the Janeway.

Going anywhere can be somewhat challenging but going to a place where Tyson is nervous and scared, is very, very difficult.

It starts with the waiting room.

We waited for about 30 minutes before being called in.

During this time, Tyson did watch YouTube but also ran around the room and tried to escape upward of ten times.

When it was finally our turn, the optometrist tried the visual acuity test again. As before, he got the larger letters correct and the smaller letters wrong. She went back to the bigger letters but then he got those wrong too.

She said the only way to be sure if there was a vision problem was to dilute his pupils. She asked if we had any upcoming surgeries as they could coordinate and do it then, which was a great suggestion but didn’t apply to us.

She obviously knew how difficult this might be and wondered if there was an easier route.
So we did the drops again. This time Mark wasn’t with me and I didn’t anticipate just how hard it would be to hold him still in order to get the drops in.

I’m not sure if you can appreciate how unpleasant this all is, by just reading it.
It is draining – physically and emotionally.

After it’s done, I feel like someone sucked the life out of me.

I also wonder what this is doing to Tyson.

And I know, our next visit will be just that much harder, as he will remember us holding him down to put the drops in his eyes.

So … drops are in and we are back to the waiting room to wait until they take effect.

After at least another 45 minutes, we were now ready to see the ophthalmologist.

I can’t say enough good things about the ophthalmologist Tyson saw. She was patient, persistent, and very thorough.

This part of the process took about an hour.

Not only does Tyson need glasses, but his prescription is significant and very close to Lincoln’s prescription.

And by the strength of the prescription, and the other signs that were present, I am guessing he has needed them for quite some time.

Relief.

Finally.

Then the reality of Tyson and glasses sinks in.

Will he wear them?

How many pairs will he break a year?

Are we even going to be able to find them on a daily basis? He has a tendency to flick and drop things. We are constantly looking for something. Constantly!

Once again, before taking him to pick out glasses, I do my homework.

I found out which vision centres parents have had good experiences with their autistic children.

I called one clinic and explained our situation. She suggested we come in for the first appointment of the morning and she didn’t book anyone else in during that time slot.

They were simply amazing.

One employee picked out a bunch of glasses and she gave us a separate room for Tyson to try them on. She let him use her computer as a distraction.

Another employee came in and suggested a pair of glasses that are flexible and suitable for kids who are a little rough.

They locked the front door so Tyson was safe and stationed another employee at the door, in case someone needed to come in.

The only thing they had left to do was check his pupillary distance.

Once again, the employee was wonderful. She said to me, “you know him best, I’ll follow your lead”.

Instead of measuring with the typical device, she said she could just mark on the lens itself. She demonstrated to Tyson how she was going to do this with another one of the staff members’ glasses.

Poor kiddo, he was so scared. He closed his eyes and his entire body was tense.

And now Tyson has glasses.

If you have managed to read all the way to the end of this post, I applaud you.

I think I might have gotten a little off topic from the original post but I have some much I want to share with you. (And I thought many people may be curious how you test a nonverbal child for glasses.)

Parents, if you think something is not right, be persistent.

Find a professional who will listen.

Because it’s not always autism.

What’s on the Menu?

Chicken nuggets

Goldfish (original)

McDonald’s fries

Chicken nuggets

KFC popcorn chicken

Mary Brown’s taters

Brookside Blueberry and açai dark chocolate

Home style restaurant fries (Swiss Chalet, Ziggy’s, Ches’s)

Cheesies

Ketchup (does ketchup count as a food!?!?)

Did I mention chicken nuggets?

Jane’s chicken nuggets, to be specific.

That’s the list.

The complete list of the foods Tyson will eat.

Just read it again.

Really sad, isn’t it?

It wasn’t always like this.

As a toddler, Tyson was a great little eater.

He loved apples, kiwis, plums, carrots, ice cream, hamburgers, yogurt, cookies, spaghetti, Shepard’s pie, pizza, bread, cereal, peanut butter.

He loved food.

As time passes, it’s hard to remember all the foods he used to eat.

Recently I was cleaning up my many ‘Tyson’ binders (other parents of autistic children will know what I am talking about) and I found a sheet of paper with a list of all the foods Tyson eats, occasionally eats and now refuses to eat.

It was a trip down memory lane.

That list has gotten smaller.

I remember when he was about 8-9 months and my aunt was watching him for the day, she commented on how much he loved food. You couldn’t walk past the fridge and he was reaching out his arms for food.

I’m not sure where things went so wrong.

It was not like one day he was eating everything and the next day he was getting only foods from his ‘beige plate’ list.

It was gradually.

So gradual in fact, I didn’t see it happening in front of me.

I do remember the first time he stopped eating spaghetti.

He was suffering from acid reflux at the time and we thought the tomato sauce was just too much for his stomach and that’s why he stopped eating it.

I also remember the last time he had an ice cream cone. He took one lick and then laid the ice cream of the table. We just figured he was full.

Loving his ice cream cone (July 2015).

Slowly over time, he lost more and more foods.

Food issues is another one of those things that often coexists with autism.

At the time, I did not stress when he stopped eating a food he used to eat. I just assumed over time he would eat it again.

He did not.

By the time we realized this, he had so little foods left.

Tyson is actually considered a problem feeder, one step above picky eater.

He only has about 10 foods that he will eat. We count McDonald’s fries and restaurant style fries as two different types of foods. When the list is this limited, you count everything.

But it’s not just about the total number of foods he will eat but also the type of food he is eating.

The beige plate.

His food consists of items mostly beige in color, plain in texture and taste.

No fruits.

No vegetables.

No meats, besides processed chicken.

It’s also about brands and packaging.

Tyson will only eat Jane’s chicken nuggets.

He will only eat the original cheddar goldfish and not any of the other flavours. If you tear the bag slightly when opening, he won’t eat them.

We have lost some foods because the packaging changed (like the snack size mini chocolate chip cookies).

We have participated in a food program at the Janeway and I have attended several Janeway and private hosted food seminars to try and help Tyson.

And yet, here we are.

Less than 10 foods.

Going out to eat is extremely hard.

We have one child who only eats 10 foods and another child that has Celiac (inability to consume wheat).

I’ve just about given up eating anywhere that is not McDonalds.

I believe many of Tyson’s food struggles are due to his sensory issues.

Eating is a total sensory experience.

We touch it.

We smell it.

We see it.

Then, we taste it.

It’s what the rest of us love about food.

When we see a picture perfect piece of chocolate cake or smell homemade bread baking, it makes us want to eat it.

Likewise, if we smell the carton of milk that has gone sour, we don’t drink it.

We are already experiencing the food before it touches our lips.

But when you are hypersensitive to touch, smell, and/or taste, it can make eating a challenge.

I know some of you reading this are probably thinking, ‘he will eat when he is hungry’.

I think I have heard that once or twice (more like a million times).

But he will not eat it.

He truly will not eat any food that is not on the list.

It’s not because the child is difficult, it’s because the child is having a difficult time!

So … what do we do?

Resign to a lifetime of chicken nuggets.

No, we keep trying.

Before the pandemic, we were working on food exposure with Tyson.

So we would go to the grocery store once a week and have a list of three items. Tyson would have to find the food, pick it up and put it in the cart.

Trip to the grocery store.

There was no pressure to eat the food, just get him familiar with different foods – how they felt and smelled.

We also were learning about the food. So I wrote short social stories about apples for example – what they look and taste like, where they grow, different ways apples are used as food.

Apples are funny foods in that they look different on the inside compared to the outside, come in a variety of colours and the same type of apple may taste different from time to time. Probably not the best food to start with.

We also started getting him to help prep simple foods like making a pizza or smoothie.

Getting Tyson to touch foods, especially ‘wet’ foods, was a challenge at first. Often he was a bystander, instead of an active participant.

We didn’t make any progress but we also haven’t done any of these activities since COVID.

So we will try again.

Off to find the next item on the list.

The reason I decided to share our food struggles was in a hope to foster some understanding and compassion to these kiddos who struggle with food.

We never set out with the intent of Tyson only eating chicken nuggets, it’s just the place we are right now.

So if you happen to be in the presence of a kiddo like Tyson, who struggles with new foods, please be kind.

We are trying.

He is trying.

He just needs a lot of practice and a lot of patience from those around him.

Perspective

After posting my last blog (My Love Hate Relationship with Summer) I found myself lying in bed one night wondering what other people thought when they read it.

Do they think our life sucks?

Do they pity us and our struggles?

Please don’t.

I am actually a very content person.

I love my two beautiful kids. I love my husband. I love my job. I love my amazing, supportive family and friends.

Do I love all aspects of my life all the time? No. But who does?

Do I love the struggles we face every single day as an autism family? No. But our struggles has made us the family we are today and we are a pretty awesome family.

I am a ‘glass-half-full’ type of person.

I think part of that mind set comes from finding ways to cope with stressors and everyday life.

As a follow up to my last post, I would like to tell you about the ways I have learned to cope with summer.

I think we as moms feel guilty about so many things. When Tyson was little, I would feel enormous guilt when we didn’t do everything as a family.

Now, how silly is that?

My logic didn’t really make sense. I’m sure typical families don’t do everything together.

But I had it in my head, that families do things together and autism wasn’t going to stop us.

In the beginning we would all go out together, which would often end badly and then I would feel miserable for taking Tyson in the first place. He really couldn’t handle it.

Then I started to refuse to go if we all couldn’t go.

Also, not a good choice. I was missing out and was a tad resentful for it.

The best advice someone gave me was to let go of the guilt and see it differently.

Instead of having an all or none approach, I should look at each outing as unique and make a decision on what worked for each family member.

At first it was hard.

Deciding to leave Tyson at home with a babysitter (aka Auntie) and going without him, was tough.

But realistically, he could not sit in a restaurant for two hours patiently for example. And so, if I wanted to go, I needed to leave him home.

Now, don’t get me wrong – I don’t leave him at home very often. Only the times I know it would not interest him, be too much for him or there would be a safety concern.

Me and Lincoln at Cape St. Mary’s

In the beginning it was hard not to feel guilty, especially when others asked why he wasn’t with us.

But as time went on, I became more confident in my decision.

For any other special needs families that are reading this, I would like to tell you that this doesn’t mean I gave up trying.

Just because your child can’t handle it now, doesn’t mean with time and practice, that can’t change. Also good advice from a friend.

Does this mean I am going to take Tyson to Bowring Park now that the pool is open, and there is a lineup to access the pool, and being in the lineup does not guarantee you entry? Not in this lifetime (G n’ R shout out).

I will avoid Bowring Park at all costs now until the pool closes. However, we may try Topsail Beach this summer during a weekday morning. (Maybe 😉)

Never give up trying new adventures, but equally important, know your limits.

Tyson rock climbing at Walnuts

My second tip for surviving summer, which really applies to any time of the year, is to find something you like to do and do it. In other words, make time for yourself.

Self care.

I think many of us, as woman, lose apart of ourselves when we become moms.

And having a child with autism (or any exceptionality) intensifies this. I was consumed with appointments, therapies, activities and goals that there just wasn’t time to do the things I liked to do anymore.

Well, last year during the pandemic I started to once again do the things I enjoy.

I started reading again, for fun.

Not articles on autism, not scientific journals about autism, not parent blogs about autism.

Reading for pure fun!

Imagine … sitting down and relaxing, reading a book when you have a list of things you are suppose to be doing like laundry, or cleaning or cooking. Well …. maybe not the cooking part 😉.

This was also hard for me. I think more so because it was a solitary activity.

As you know, I also started a blog. I have always loved to write and now I get to share our story with all of you, which is very therapeutic for me.

And just this past October, I joined a Learn to Run program.

Best decision ever – hands down!!

To be honest, I always wanted to learn to run.

Runners seem so content and happy. (Not the ones like me, that look like they are struggling to breathe but those seasoned runners, who make it look effortless.)

However, that is not the reason I decided to join.

Myself, Tyson and Meagan (my sister) were on a walk and Tyson took off running and I couldn’t catch him. Luckily, it was on a trail, and was in no immediate danger but it got me thinking that this situation needed to change.

I needed to get in better shape in order to be able to catch him if he ran in an unsafe environment.

What I didn’t realize was that running would give me so much enjoyment and contentment.

When I run, I don’t have a single thought in my head.

It’s my me time!

And after a run, I feel a wonderful sense of personal accomplishment. After only 3 months in the program, I could run 12 km. And for someone who has never worked out since having children, it feels pretty great to do able to do this.

Disclaimer – I’m not aiming to be a track star and truth be told, I’m pretty slow. Actually, extremely slow.

I’ll probably never to be able to keep up with Tyson, but running has a new purpose now – one that’s all my own.

Dec 2020 – PB 12 km

My Love Hate Relationship with Summer

The warmth of the hot sun.

The smell of lilac and fresh cut grass.

Blue raspberry soft serve.

The sound of the ocean and the squeals of children trying to outrun the waves.

S’mores on Topsail Beach.

Walks after supper.

Vacation.

What’s not to love about summer?

It is the season I hate to love.

It is by far the most challenging season for me being an autism mom.

The routine of school is over. That, in itself, brings new challenges.

Tyson strives on routine.

But it’s more than just a change in routine that makes summer hard.

Summer is the time when social media is filled with all you lovely people making beautiful memories with your families.

And I think ever summer I grief a little for what summer should be for us. I want the hikes in the woods, the fires on Topsail Beach, the outdoor movies at Bowring Park, the fancy ice creams, followed by the sticky hands and faces.

I want it all.

I want to be so busy, that when I get home, I drop with exhaustion.

But we can’t do that. We have to plan our days carefully, making sure not to overwhelm Tyson.

We also don’t attend events that are busy because we know it will be too people-ly for him.

Going to Bowring Park and realizing they have a festival going on with a bouncy castle is enough to put me in panic mode because I know it’s not going to end well.

I guess this is why last summer was so great. We didn’t go anywhere because of the pandemic. There were no feelings of missing out because everyone was in the same situation as us.

The last couple of weeks have been a reminder of how things change for us in summer.

We went to Manuals River for a walk and kids were swimming. Tyson wanted to swim too. I am not cool with Tyson swimming at Manuals River. Note to self – avoid Manuals River until it’s too cold to swim.

We went to Chapters and Tyson got upset that I wouldn’t buy two copies of the same book that he already had at home. The lineup was huge. He dropped to the floor and kicked and cried while everyone stared at us. It was not a good day. Note to self – avoid Chapters during busy times.

We went to Lester’s Farms and I am not sure what happened. Tyson got upset and we had to leave. Note to self – don’t ever go to Lester’s Farms on a Sunday!!!

We went to Neil’s Pond for a walk and a certain person, that shall remain nameless, let Tyson put his feet in the water, with his sneakers on. The next walk around Neil’s Pond, he just ran right into the water with his sneakers on. If Tyson is allowed to do it once, he doesn’t get the idea that the may not be able to do it the next time. Tyson was mad for the rest of the walk that his sneakers were wet but would not turn around and go home. Note to self – find new walking area with no bodies of water. And don’t get me started about Topsail Beach – let’s just say I don’t go without wearing runners.

And then, there are all the other places we normally frequent, that are just more crowded in summer when the kids are out of school – Get Air, Axtion, and the parks that have splash pads. All are off the list on the weekends, or when the weather is super nice, or for the indoor places, when the weather is crappy.

It’s a fine balance between attempting to go somewhere and knowing when to stay home.

Summer is hard.

And it’s hard when you have an older child that wants to do all these things.

So, we divide and conquer.

One of us will often stay home with Tyson or we take two vehicles, so if Tyson gets to his limit, one of us can take him home.

It’s all about finding the balance.

And now Tyson is running again.

For those of you that are not familiar with this idea, I am talking about eloping. Elopement is a term used to describe when an individual leaves a specific area without permission. It is very common in autistic children.

I feel the definition does not give a good description of the actual event though. Picture this – at the moment you least expect it, your child takes off running, irregardless of the environment they are in, as fast as their little legs can run, which in Tyson’s case is very, very fast, with the adult frankly chasing behind. Picture busy roads, the exit door at Chapters, the school parking lot.

It can be terrifying.

In the last month, Tyson has run away from me probably 5 or more times. Sometimes the situation has been under control (like when on a trail), other times it has scared the living s$$t out of me.

Eloping makes you want to never leave the house again.

As all of you look forward to getting back to normal living, please remember us families, that are still living life in our backyards, where it is safe.

And if we happen to be brave enough to leave the safety of our nest and things are not going well for us, please be kind. We are just trying to soak up some summer too!

Salmonier Nature Park, our favourite place to visit.

From PECS to Proloque2Go and Everything in Between (Part 2)

Before talking about where we are now in terms of communication, I need to take a step back and talk about how we got there.

In my last blog, I talked about Tyson using PECS (Picture Exchange Communication System) as his primary method for communication as a toddler. In addition, we supplemented his language development with a lot of visual aids and some very basic sign language.

From toddler to preschool age, we focussed on teaching Tyson the sign for more, open, all done and bye. Signs that are easy to do and easy for most people to understand.

Tyson still uses the sign for more to this day – more chicken nuggets, more pushes on the swing, more electronic time.

MORE

In addition to this basic sign language, we filled our house with all sorts of visual aids. We had a First/Then board, a daily visual schedule and pictures of the toilet (for potty training) everywhere. Common items in our house like the fridge, the bed, the door, and the TV were labelled with cue cards. As well, each drawer in Tyson’s bureau had the word and a picture of the clothing it contained.

An example of Tyson’s Visual Schedule

As Tyson’s interest in letters grew, I used a Bristol board to create a giant alphabet, paired with a picture to represent each letter. Sometimes we would play a “game” where I would give him a picture, sound out the word and he would have to match it to the correct letter.

I consider us very lucky that Tyson developed such a love for letters (and numbers).

We had thought about switching to an electronic app when Tyson was about four. We tried a free communication app called Sounding Board but after finding the iPad in the sink filled with suds and water, we were hesitant.

We could not replace iPads on a weekly basis.

Although PECS had given Tyson the ability to communicate, it only gave him a voice for what was currently in his binder.

A voice for what I thought he wanted.

PECS was also labour intensive.

Prep work for PECS

Take a picture of the item or use a google image.

Size it to the right dimensions for the binder (cause lets be honest, I am a tad bit anal).

Cut it out.

Laminate it.

Cut it out again (after laminating).

Put Velcro on it.

Repeat.

Repeat.

Repeat.

For 100s of little pictures.

And those little pictures got lost all the time. Every time I swept under the couch I would find one. I was constantly inspecting Tyson’s binder to ensure that all the pictures were there.

Before Tyson started school, I felt the need to give the electronic app option another try. This time we decided on Proloque2Go and have never looked back.

Proloque2Go is a symbol based app that has hundreds of preprogramed words, along with the ability to add custom icons and folders. The main screen for Proloque2Go focusses on core words (verbs, adjectives and pronouns) which is very different from what we had used in PECS which focussed on fringe words (nouns).

Home Screen for Tyson’s Proloquo2go

There are generic folders generated by Proloque2Go for categories such as food, colors, numbers, and places which I can customize specific for Tyson.

I also created custom folders for such things as family members, TV shows, school, homework and home items.

As Tyson became more proficient with Proloque2Go, he learned how to add his own icons. He would take a picture of the cover of his new books and type the book title for the label.

“I want Walmart please”

Proloque2Go also has a qwerty and alphabetize keyboard to allow the user to type their own words, independent of symbols.

Tyson will also use the search feature if he doesn’t know how to spell the word but knows the beginning letter. He will often add a vowel after the letter to help him find what he is searching for (ie ba, be, bi, …).

His brain is just amazing.  

Proloque2Go has given Tyson a voice.

A voice that is not limited to what I think he wants to say.

I think when I describe Tyson’s ability to use Proloque2Go to most people, it gives them a false sense of where he is, communication wise.

We still have a long way to go.

He is able to repeat back what we say using his iPad but independent speech, outside his own agenda (DVDs he wants, places he wants to go, snacks), is really rare.

On Friday, when asked, he told me “watch movie school” and spelled it all independently, but he couldn’t tell me the name of the movie.

Now I’m sure he knows which movie they watched but yet, he struggled to answer the question.

Questions are hard.

Communication is hard for kiddos with autism.

Last week I was helping Lincoln with homework and Tyson was angry that electronic time was over. He used his iPad to tell me “cry”. Every 10 seconds or so, we would hear Josh (the voice on Proloquo2Go that Tyson uses) say “cry”. But Tyson wasn’t actually crying, he just wanted us to know he was upset. When me and Lincoln would look into the living room, he would pop his head back down so we couldn’t see that he actually wasn’t crying.

It was cute, sweet and a little sad all wrapped up into one.

Sometimes I think we are not doing enough to help him develop his communication. And other times I think I have the poor child drove with my expectations.

But I do not worry about it …. I know he will get there.

I can see us in the future having a grand chat through text.

And it will be great.

And I will look back on this time and marvel at how far he has come.

From PECS to Proloque2Go and Everything in Between (Part 1)

The other day I opened a file on my computer called “pics” and it made me smile, laugh, sigh and pause all at the same time.

Pause to reflect on where we were and where we are now.  

I am guessing most of you have folders on your computers with the same title, but I am thinking my folder is unique. 

Maybe unique is not the right word – maybe different is more fitting. 

It does not contain pictures of the kids, or family gatherings. Nor does it contain scenic pictures of wonderful trips.

The very first picture I opened from this folder was of a tub of Eversweet butter, followed by chocolate covered blueberries and toddler cereal bars.  

There was lots of food pictures but also pictures of logos and random generic places like the grocery store and the playground. This was the folder I used to store all the images we needed for Tyson’s PECS binder.

PECS stands for Picture Exchange Communication System. It was the very first formal system of communication we used with Tyson. 

For those of you that are unfamiliar with PECS, and let’s be honest, this would be the majority of people, PECS is a type of alternative/augmentative communication (AAC) system that is low tech. It is often used by individuals who have little or no verbal skills. It can also be used by individuals who are verbal but sometimes have difficulty expressing themselves verbally.

This system of communication is basically as the name suggests, whereby the individual uses a picture to communicate what they want in exchange for the item. For example, Tyson would give me a picture of goldfish crackers, I would then take the picture and in exchange, I would give him the goldfish.

Life altering stuff!!! 

Before PECS, it was very hard for us to determine what Tyson wanted in the run of a day.  

I have heard many people over the years say it’s hard when you have a pet and you know something is wrong but they can’t tell you what it is. Well, that’s exactly what it was like, except it was our child.

Our beautiful little toddler had no way to communicate. He also did not have the skills at the time to point, so unless it was within reach and he could get it himself, it was a guessing game as to what he wanted.

He could go to fridge or go to the cupboard if he was hungry and then we could present items he might want. So I would take two items out of cupboard and ask which one he wanted. He would push away the item he didn’t want but never touched the item he wanted. (It took us a little while to figure that one out).

He could not tell us if he wanted to watch a certain TV show or if wanted to go the park. He could not tell us if he had a belly ache or if he was scared or tired.

The moment that stands out the most is the day when he was just sitting on the couch crying. He had these big tears rolling down his cheeks and he was just sobbing. We had no idea what was wrong.

But things started to change when we introduced PECS. We started with just a few pictures of highly motivating items and added more and more pictures as he progressed. Eventually we had a PECS binder.

He had a page for food, drinks, places to go, toys, and TV shows. We started to use a sentence strip and Tyson’s requests now turned into “I want goldfish please”. It was great.

It was progress. And as an added bonus, Tyson’s frustration level went down. He could tell us, to a certain degree, what he wanted. 

As time went on, we added more pages. There was pages for family members, daycare, songs, emotions, colours, numbers and right at the back of the binder, the icons for “yes” and “no”.

PECS is by no means the perfect system. Tyson could still only ask for something that we thought he wanted. So if the picture was not there, he could not ask for it. We have since moved on to an electronic AAC system called Proloquo2Go, however PECS was a great starting point. And we started using PECS about 6 months after Tyson was diagnosed and continued to use it until before he started school.  

I just wanted to add, for any parents that are reading this and their child is nonverbal, please don’t be scared to use AAC, thinking it will inhibit speech. If the speech is going to come, it will come. A child will pick the path of least resistance and verbally saying a word is always easier than going to a binder, picking a picture and bringing it to an adult.

Providing a nonverbal child with the means to communicate is giving them a voice. And all children need to be heard.

Disclaimer – If you are planning on implementing PECS with your child, please consult a speech language pathologist (SLP) as they are trained in this field and can provide the guidance and tools needed.

Stay tuned for Part 2 

ASD and Tyson

Bright, blue eyes. Tangly, curly hair. Handsome face. Energetic. Stubborn. Determined. Strong.

Autism Spectrum Disorder (ASD). Attention Deficit Hyperactivity Disorder (ADHD). Apraxia of speech. Sensory Processing Disorder.

Two very different lists. It is the combination of the two that makes Tyson who he is.

The beginning years focused heavily on the second list. The list that was associated with all the things Tyson could not do. The list that seems to grow as time goes on.

When a child is investigated for ASD there are three broad areas that are observed: 1) communication, 2) repetitive, restricted behaviours and 3) social interaction.

When I think about toddler Tyson and our beautiful boy now, all of these struggles are still a very big part of his life, they just present a little differently.

Communication

When Tyson was 8 1/2 months he said his first word, dad of course, which was followed by bath and bye. I don’t recall thinking it was odd that he did not say mom.

What I did not know at the time was that Tyson would regress and lose those beginning words. I regret not getting a video of that sweet little voice saying dad. I guess it goes along with the territory of being the second child.

Before I became a parent to an autistic child, I never really thought about communication. As parents, we think in terms of words. First words, new words, the number of words, curse words. I remember recording in Lincoln’s baby book that he had 50 words at 18 months. It’s all about the words.

However, there are actually lots of ways to communicate besides speech – facial expressions, body language, gestures. Many children with autism often have difficulties with all these types of communication.

Toddler Tyson was not using any forms of communication – no words, no sounds, no pointing, no gesturing, no eye contact. Nor did he respond when you said his name. It is really hard to remember how things were back then. No shared smiles, no silly looks, no pointing to show you something. Basically no communication.

Although Tyson’s verbal communication has seen very little fluctuation over the years, we are now at our all time low in terms of the words and sounds Tyson can say, which is hard to believe after 6 ½ years of speech therapy. Tyson can say dad, baba (that’s me, the mama), pop, bye and ‘es’ for yes. It’s been hard to see him constantly regress in verbal speech. At one point he had about 20 words or word approximations. That list is still pinned to our cork board.

But if he said it before, he can say it again. We will get there.

I am truly grateful for how far Tyson has come in all the other forms of communication. He currently uses a communication app called Proloquo to speak for him. His eye contact is improving. He points and drags us to show us what he wants. He stomps his foot or slaps his leg for no. His typing and spelling skills are lit (as Lincoln would say). And his facial expressions are priceless. Lets just say if looks could kill, me and Mark would be in trouble.

And he shares with us – he shares his happy, his anger, his sad – in his own special way. And how can we not be grateful for that!

Repetitive, Restricted Behaviours

In terms of repetitive, restricted behaviours I did not see these signs as easily when Tyson was little. He did not line up toys, or look at things out of the corner of his eye. He did not rock back and forth. However, he would often hop along the floor on his hands and knees. He would spin in a circle over and over again without getting dizzy. He needed to have doors closed at all times or he would become very upset. He placed his juice in the exact same spot on the table every day. And when I say exactly the same spot, I don’t mean the general area, I mean the exact same spot.

Present day, Tyson’s repetitive, restricted behaviours are a little more subtle in many daily settings. He may do the same action over and over or follow the same path (up one side of the bed, tumble, down the other side). When excited, he may jump up and down. When he is really upset or dysregulated, he will pace.

I think the most noticeable repetitive, restricted behaviour involves Tyson’s electronic usage. He prefers to watch the same clip of a show (~ 15-20 seconds) over and over again. It’s usually a funny part or a very specific sound or phrase. Well, what he actually prefers is to watch TV, his iPad, his DVD player and listen to music all at the same time. It’s amazing to see how he can control all devices simultaneously and keep each one playing the exact same clip. Amazing … and well a tad annoying.

His restrictive behaviours have trickled over into food preferences but that is a topic for another day.

Social Interaction

In terms of social interaction, toddler Tyson showed very little interest in people. He did not acknowledge people when they entered a room or have a desire to interact with adults or children. I do not remember baby Tyson having the same lack of engagement. He would watch people, smile, laugh and do all the things that neurotypical babies do.

It was like a switch was turned off when he turned one. It is actually fascinating to think about how the brain works, until you stop and remember it’s your child.

Tyson still has major struggles with social interaction. Although he now will notice when a person comes into the house, he does not necessary seek them out. Unlike most children his age, he does not seem to want to play with other kids. He is working on more or less tolerating other children next to him.

Tyson’s interaction with adults is mostly to get needs and desires met. He will tell us if he wants food or wants to go outside. He will show us DVDs and books with the premise that we will take him to the store to get them or order from Amazon.

I think no matter how much time passes, Tyson will always need support in these areas. Right now, our goal is to take it day by day, helping him become the most independent version of himself that he can be.