Confessions logo

Autism: My 20 Years of Learning and Love

Part One - Childhood: The Learning Starts

By Julie BuchyPublished 2 years ago Updated 2 years ago 16 min read
6
Photo by Duangphorn Wiriya on Unsplash

INTRODUCTION

Her name is Lesleigh and she is the subject of this article. She and I have been a part of each other’s lives for 20 years. It has certainly been an interesting ride.

She was all of seven years old when we first met. She was wearing a brightly coloured woven dress that I came to learn her grandmother had brought for her from Mexico. She had a sweet, cherubic face and her dark, longish hair was a bit disheveled, but normal for a little girl of her age. She sat on the seat at the McDonald’s we were in, eating her chicken nuggets and fries. She spoke very little, in fact most of what she said was just repeating something she heard her dad or me say and when she wasn’t speaking, she was making an audible rhythmic hum.

Previous to my meeting her, her dad had told me that she had a condition that was called Pervasive Developmental Disorder, autism type.” I had been prepared to encounter a child with a disability so what I had already seen was not unlike what I expected. Having worked in the daycare field for 10 years I knew the term, but this was my first experience with and autistic child. Still, I was quite confident I knew all I needed to know; but, as it would turn out, I knew very little and over the next two years I watched and observed this little girl with much amazement.

Lesleigh April Michelle B. - Her nickname is LAMB

THIS WAS THE BEGINNING

I was dating her dad, James. He was her custodial parent, and though he worked full time, he was running a household and raising a child alone, so funds were limited as were the childcare options when he was not at work. To be honest, most of our “date nights” were Tuesday evening grocery shopping excursions when Lesleigh’s maternal aunt would provide babysitting for him. Any other outings we had usually included Lesleigh, unless she was able to spend some time with her mother.

We spent our time together either at my place or at James’, watching television or a movie. If we ate a meal, it was either take out from a burger joint, or, sometimes we would cook something simple. One of the first things I learned about Lesleigh was that her food choices were extremely limited. Her diet consisted of Rice Krispies cereal, toast, chicken nuggets, French fries, macaroni and cheese, cheese pizza, chicken noodle soup and milk. She did eat a few fruits; mostly red berries, bananas and occasionally, grapes. She would avoid anything green, so then it was no wonder vegetables were completely out, and she wouldn’t even eat green Jell-o! As for snacks, count in Ritz crackers and chips, and disregard candy or chocolate. If we ever went out for a breakfast on the weekend the only things she would eat were pancakes with butter, but without syrup, and toast. Usually, it was my toast that she would just help herself to so we learned to order extra just so that I could enjoy my full meal.

Photo by Eiliv-Sonas Aceron on Unsplash

A visit to the zoo meant taking a wagon so that Lesleigh could ride around in luxury. She was not a fan of walking anywhere, but give her a sunhat, some sunglasses and someone to pull her around, she could ride around all day just enjoying being outside and paying very little or any mind to the animals. She also wasn’t ever opposed to cooling off with an ice cream cone or a popsicle. Another thing that was sure to please Lesleigh was a drive to anywhere. Something she enjoyed very much was looking at Christmas lights or as she referred to them “pretty lights” and our city didn’t disappoint in that department as the entire downtown area was decked out in a multitude of holiday revelry. Equally appealing to her were long drives to anywhere. Fortunately, both James’ and my parents lived some distance out of town so there were a number of road trips for her to savour.

As young as she was, Lesleigh loved to draw. She drew pictures anywhere, including the walls at her home, but what was very interesting was that she never liked to colour in the traditional sense. Colouring books and colouring pages were never coloured; rather, they were embellished in Lesleigh’s own unmistakable style. She was particularly fond of drawing trees and flowers, with an occasional well-defined person in the mix. She used crayons, if those were all that was available – in restaurants, for example when those colouring sheets were given to little kids – but her preference was brightly coloured markers. Thankfully her dad made sure they were the washable kind.

Lesleigh was also a very observant girl. I am sure that she spent many hours watching her dad access the internet, so while I was surprised, I wasn’t totally so, when one day I sat down to use the computer and log onto the internet, there in the address bar was perfectly typed www.lesleigh.com. She knew the mechanics of getting onto the internet before she even knew what the internet was. This was the perfect predictor of the computer savvy person she would become.

Photo by dogherine on Unsplash

Another example of how observant she was, became evident when she was riding in the backseat of her dad’s care on the way to my house. She recognized the streets along the way and when we were near, she began looking down the streets and back lanes and would say “no” to each one that was not where we were supposed to turn. Once, James deliberately turned down the wrong lane and she was quite insistent with an emphatic “NO.” She really did know where to go all from observing from the back seat of a car!

Lesleigh was very easy going for the most part but meltdowns occurred and when they did, they were major. Although she used it, she was not fond of the word “no” when it was applied to her. She also disliked waiting immensely, and being told to stop or not to do something. More than once, I observed her dad leaving a shopping cart behind and carrying her out of a store. On one occasion when I was a patient in a hospital for major surgery, James had to cut their visit short because a nurse came into my room and would not let her be where I was for a few minutes. A child having a tantrum is not ideal anywhere, even less so in a hospital.

The first two years of my relationship with James was an intense learning curve for me. Lesleigh was an interesting and challenging child but I felt that I was making the best of it and that she and I were making strides. It hadn’t been long before she was calling me mom and I loved it. She still saw her own mother and also called her mom, but I was around her a lot and took that place for her often. I also took interest in her schooling and went with James to the parent teacher conferences and advocated for her with teachers and other school officials when the need arose.

As we entered the second year of our relationship, we began talking about blending our families. What I haven’t discussed was that I was also a single parent of a boy just two years older than Lesleigh. I was very unhappy in my job so I was looking for a new employment which spurned James to look at the help wanted ads as well. He applied for a number of opportunities in this process and was offered one a couple of provinces away. Another bonus was that this province provided excellent supports for people with disabilities, so it would be of benefit for Lesleigh as she grew into an adult. We decided to make the jump, and with the blessing of both our children’s other parent, we made a major move. Though her dad and I did not marry until almost 4 years later, it was at that point I officially became this girl’s stepmother. My journey to understanding autism and Lesleigh’s unique identity had begun.

Peaceful slumber 2003 - Family photo

NOW I WAS THE PARENT IN EVERY SENSE OF THE WORD

We made the trip over two days. All our belongings were on a rental truck that was being driven by James’ dad. James drove his dad’s car and my son was his companion, while I drove my own car with Lesleigh as my passenger along with the family cats. For almost 700 miles I heard not a peep from this child except for the occasional hum as she watched the world pass by. Trying to engage her was futile as she was in her own contented world, nothing bothered her, and it seemed that very little interested her. She accepted snacks and meals along the way, and always had to use the restroom no matter the reason for the stop, even if she had just gone shortly before. I can’t say that this was a terrible drive.

We arrived at our new home on August 31, 2003, and we were just in time for both kids to be enrolled in school and in attendance on the very first day of class in September. Specialty classes were available for kids with autism but since we were from out of province our say-so on her diagnosis was not enough. Lesleigh was placed in a more academic program but she did not thrive. The teacher could not seem to engage her and Lesleigh spent many an afternoon sitting in the hallway with paper and a box of markers. When the teachers called the educational specialist to observe Lesleigh’s behaviour, they were told that they had actually failed her by placing her in the hallway. Lesleigh had actually manipulated the teaching staff to get put in the hallway and was rewarded with paper and markers to draw to her heart’s content. By the end of the first month of school, Lesleigh was transferred to a different school with a more capable staff, but it still was not in the dedicated autism program. Lesleigh was a very capable student and actually flourished in this environment, but her meltdowns became frequent and proved to be too much even for this staff so at the end of that academic year, Lesleigh received funding and was designated for the autism program the following year.

Lesleigh attended this dedicated autism program for the next two years and did fairly well. My only concern was that all the strides she had made academically during her first year in our new city was not maintained as I found that the focus of this programming was to teach to the least capable students instead of to the most capable. Her reading and comprehension skills suffered the most through this process. At the end of these two years, she was transferred to yet another school, not due to anything other than she had reached the age where the most appropriate placement for her was with kids of her own age level.

Astro Boy comic strip. Hand drawn by Lesleigh - Year five, 2006

This next school was a middle school that offered years six through nine programming. In the dedicated autism program it was difficult to call them grades as the learning expectations were based highly on the social outcomes and less on the academic. Lesleigh came to this school with a bit of an academic deficit, and as such the staff felt she would do better in the year six teaching that this school offered. They were correct. Lesleigh’s teachers over the next two years, year six and year seven, were staffed by young and vibrant female teachers who had a good base in teaching students with developmental cognitive disabilities. They were also very good role models in terms of fashion and dress. It was here that Lesleigh really developed into the young woman she is today. She began emulating the dress and style of her teachers, she took a keen interest in jewelry, most notably earrings, necklaces, rings, and bracelets; these became her signature style and remain so to this day. These young teachers also encouraged Lesleigh to read and write sentences and by the time she had completed the first two years in this school she had become a very good speller.

Pen drawing by Lesleigh - Her year six teacher, 2007

As with many autistic people Lesleigh’s world was a very tactile one. She really liked to touch and feel things and just the look of textures interested her. Her school had a large art piece hung in the hallway that was comprised of many different textures. One day, Lesleigh left her classroom to go to the washroom and on her way back she stopped to touch these textures. She was never rough or destructive but a teacher’s aide did not see it that way so she basically scolded Lesleigh for touching this piece of art work. Lesleigh of course reacted rather quickly, and unfortunately a bit violently, and struck the aide. She immediately realized that she had done wrong, and became fearful, bolting out of the school. I got a panicked call from her classroom teacher telling me that Lesleigh was missing. The teacher went on to say that she and several others had looked around the immediate area but Lesleigh was nowhere to be found. I contacted her father immediately and we both left our jobs to go and look for our daughter. The entire staff was asked to help as were a number of school volunteers including a number of my co-workers who knew Lesleigh and were as concerned as I was. The police were also called. This was the day that we learned again about Lesleigh’s incredible observation skills.

People were scouring the entire city. We had not only contacted police, but we had also contacted the transit department, thinking that perhaps Lesleigh had boarded a bus. We had supplied photos of her and people were stationed at bus stops asking drivers if they had seen her. While most hadn’t, there were a number that had seen her walking along the street, but at no time had she boarded a bus. We also assumed that she would not have been successful if she had tried because she had no money with her so paying the fare would have been impossible and would have added to her distress. We would find out later that she had indeed boarded a train after a long 40-minute walk; a walk that she had done a number of times with her school class. Here she boarded a train and rode for what must have been hours, no money required - proof of fare was not carried out consistently. She only got off the train when she was told that she had to because that particular train had reached the end of its run. There were a number of bus connections from this train hub and she found the bus to another hub she was familiar with and from there boarded another that was the one that stopped in our neighborhood. After being missing for over seven hours she made her own way home, only because of her observation and memory skills. That was a scary and trying day. I must have aged 10 years!

Whether in the school environment or at home, there were challenging behaviours to deal with. Lesleigh’s food choices didn’t get too much better from what she ate at the age of seven. Oh, I was successful in getting her to venture into other, less processed proteins and spaghetti became a favourite food, but without any sauce. No, straight up with parmesan cheese. I also learned quickly that just because most pasta tasted the same to me, anything other than spaghetti-esque noodles were not considered edible and not to even attempt to feed them to her. If I tried to serve her rice, I would be told that rice was “Chinese food” and that I must be Chinese because I liked to eat rice. Temper tantrums were frequent and more often than not, any consequences that were suggested, were met with more defiance. One memory sticks out rather sharply. She had done something at school that we were informed about. She was likely in year seven by this time, so we were trying a new disciplinary approach, allowing her to assess the incident and suggest a suitable consequence. She thought for several minutes and said she didn’t know what would be enough, so her dad said to her, “I think that you should have no computer time for three days.” She did not even have to think about it, and immediately responded with, “Nope! Think harder!”

Lesleigh 2008

Except for some behavioural challenges and dealing with the raging hormones of puberty, the rest of her years in middle school were uneventful, but as she neared the end of year nine, I was feeling that she needed to be more academically challenged; she could read, spell and had fairly good comprehension, not at a year nine level but she was progressing. Her teacher agreed. When she was moved on over to the high school she was placed in a more academic program. Boy was this a bad move!

It was not that the content of the classes was too difficult because it wasn’t as there were aids to help these kids learn at their optimum level. She was also enrolled in a dedicated art program. It really was not the content; it was all in the structure. She had become so accustomed to the “learn at your own pace and be a free spirit” model of learning that anything more structured became unlikeable to her. She would often lament that she was taking “college classes” and she hated them. Reluctantly, her dad and I agreed that this was not the learning environment for her and the school agreed to place her back into the life-skills program where the students were predominantly on the autism spectrum. She was well ahead of many of her peers in basic reading and writing; she did well in basic math, which mostly consisted of learning about money, spending and budgeting; and she was still encouraged and relied upon to provide classroom decorations because of her artistic ability. The class spent a lot of time learning the transit system (though she needed little help there) and travelling throughout the city, eating lunch out weekly, within their established budget. Communication was constant between me and the school and together we would strategize various approaches to dealing with her occasional outbursts. For the most part, the rest of her school years went fairly well and by June 2013 they were over.

Graduation Day 2013

*****

This story continues in Part Two - Adulthood: Still More to Learn.

Childhood
6

About the Creator

Julie Buchy

I have words inside me. I am told I am a good storyteller. I look for inspiration all over and and want to release my words to other's eyes and minds.

Mom, wife, and now grandmother...just trying to live a happy life.

Reader insights

Be the first to share your insights about this piece.

How does it work?

Add your insights

Comments

There are no comments for this story

Be the first to respond and start the conversation.

Sign in to comment

    Find us on social media

    Miscellaneous links

    • Explore
    • Contact
    • Privacy Policy
    • Terms of Use
    • Support

    © 2024 Creatd, Inc. All Rights Reserved.