A Summer of Good-byes

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

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

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

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

Her presence alone was regulating to him.

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

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

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

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

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

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

I’m not sure.

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

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

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

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

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

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

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

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

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

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

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

Just think about that for a moment.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

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!