Our Life on the Spectrum

Autism is a spectrum disorder; this means that Autism touches each person in a different way. It is almost like a fingerprint, there are general characteristics, but no two are exactly alike.

Our sweet daughter, Roo happens to be one of the many children across the world that are on “the spectrum.” Roo has always been an outgoing, highly verbal, sensitive, intelligent child, but she was also really “quirky” which has caused some significant challenges in her short life.

Roo is our oldest, and I left the workforce when I pregnant with her to be a stay-at-home mom. Looking back on that decision, it was one of the best parenting decisions I have ever made. As a baby Roo was sensitive to loud sounds, and would get overwhelmed easily, but with no other children to “compare” her to we just thought this was normal baby behavior. As she grew and began to eat solid foods she would gag and choke on foods that most babies would gobble up. This scared us and prompted us to make an appointment with our pediatrician. She too was concerned and we were referred to the children’s hospital for further evaluation, however this visit left us with more questions than answers. The specialists thought that she just had a sensitive gag reflex, but provided no real solutions other than hope that she would grow out of gagging eventually.

Once Roo was mobile I started joining some Mommy & Me groups, it was at these groups that I noticed that her play was different than the other children. She was incredibly intense when it came to play, and would frequently become hyper-focused on the task that she was doing, and would almost always involve some form of kitchen role play and lining items up. When it was time to leave an activity or stop playing she would have extreme tantrums that were beyond reasoning. I also noticed that she a number of fears surrounding heights, swings, or other activities that required her feet to leave the ground.

Around 9 months I decided to go back to school part-time and thought it was a wise decision to enroll Roo in daycare for more socialization. Her care provider always reported that she was a treat to have, but also noted that Roo would become easily frustrated and would also hit children if they invaded her personal space. We all brushed this behavior off because developmentally that was “normal” at her age.

We received these types of reports consistently over the next 3.5 years as she transitioned to other childcare facilities. Her teachers were always amazed at her academic abilities and how friendly she was, but were also troubled that she would resort to “whacking” her classmates if they invaded her personal space. The equally perplexing part was that she seemed to have no issue invading other people’s personal space. I don’t mean us as her family, because as we all know parents don’t get personal space, but she would become enamored with one particular classmate and consistently invade their personal space.

We like to consider ourselves progressive, and talk to her often about body autonomy and setting boundaries for her body, but all of the talks did not seem to register when it came to respecting other people’s personal boundaries. She would talk to and hug random strangers of any age and would also try to kiss children her age at the playground. She did not seem to understand that this was not okay behavior, but again we just assumed this was normal behavior for her age.

All of her symptoms came to a head when we enrolled her into a gifted school last year at the age of 4. When I went back to school, she attended preschool full-time, so we just knew that attending a structured school setting would be an environment she would thrive in. She was consistently bored at her previous preschool because she knew all of the presented curriculum and we blamed the boredom as the cause for her behavior.

The first few weeks went swimmingly with very few hiccups, but as the weeks went on we noticed that Roo was reporting that the kids in her class were not very nice to her. This resulted in many conferences with her teacher, and I quickly realized that I was going to spend the school year advocating for her.

By the end of the winter semester, Roo was starting hate school, and I was starting to hate that I had to send her everyday. Sadly because it was a private school we were locked into a contract, so I found myself having to fight to not have her light dimmed by her teacher and peers. Her teacher began emailing and stopping me after class each day to comment about Roo being “bossy,” not responding well to schedule changes, calling her classmates and teachers “rude” when she felt she was being mistreated, and hitting classmates who invaded her personal space.

Some of these concerns were valid from her teachers, we do not condone hitting of any kind, but some of the other concerns angered me and made Roo feel as though her teachers disliked her. In many ways it felt as though they wanted her to fit a cookie cutter mold of what a 4-year-old gifted child was supposed to behave like, and refused to allow any deviations.

It is important to note that while all of this was going on I was also pregnant with our Littlest Love, and the school consistently blamed Roo’s behavior on the pregnancy. Once the baby arrived in March of 2017, Roo’s behavior was spiraling out of control at school and of course the baby was the perfect scapegoat for the school to avoid having to confront the underlying causes of what may have been prompting Roo’s behavior.

After several back and forth conversations it was revealed that there was a classmate who had his own set of challenges that included hitting and lashing out. It was difficult to distinguish whether Roo’s behavior was related to the incidents are not, but I needed to get answers because it was clear that she was becoming miserable at school.

I contacted our pediatrician with our concerns. In addition to the behavior at school Roo was still exhibiting symptoms that included hyper-focusing, resistance to change, mood swings at home. Our pediatrician felt very strongly that we should have her further evaluated by a psychiatrist and OT/PT.

Thus began the agonizing period of waiting…