This essay was supposed to be a profile of a person, organization, or place. The assignment noted that there should be “interviews” with the subject, which put us in a spot, as we were still in Covid-19 precaution mode. Mackie chose to profile me, which…erm…is not my comfort zone, but as we were working within a time-frame, there were not too many other options. **There is some brief editing to ensure privacy, etc.** The title is his own creation as well, once we woke up to realizing that this was an expectation for each essay, he came up with them in his usual way of getting right to the heart of the matter.
“The Art of Being a Mom to the Child Autist”
E***** S***** School was my first time being away from my mom ever. Kind though Miss Donna was, I was thinking only about the fear that I might not ever see my mom again. The maxim stating to be careful, you might not want what you asked for, certainly seemed to now be true for me. Hugs from someone was all I wanted, but as soon as Miss Donna tried, my whole body went to run away. I thought wanting to go to school was the thing for me, that it would be the happy place you watch on Sesame Street. Playing, and singing, and art all day long. I wanted so much to feel what the rest of the kids at school felt.
I was excessively active there that day, as the rest of the students sat at many tables trying to get started on some work. Really, the only thing on my mind was mostly that I wanted my mom. Thinking, acting, feeling sadness, the school that I was at made me think that my mom was wanting me to suffer for some unknown reason. What I wasn’t aware of, was that they were lying to her too. This was a hallmark of my school years, up until high school. As she said, “There was always a sense of a subtext, that I never knew what actually went on at school. But my generation still hangs on to that notion that teachers and school administrators are experts. I never knew how to question whether they were telling me the truth or not. Like, when your first school told me they couldn’t ‘afford’ a para for you. I had no idea that was illegal for them to say such a thing.”
I was wanting to chasten her, should I ever be able to speak to my mom, because it felt to me that she acted like she wanted me to be at school and out of her hair. This was really not the case, but I believed it. Long ago, she had been free to do whatever she had wanted. From the time I was born, that freedom had been taken. She was no longer able to stay up late, sitting and reading many books in the free time she used to have. Gone too were her days of tramping through the countryside of Virginia, as she’d worked as a field archaeologist. A chance arose in 2004 that the Birth to Three program sent me to UConn for an autism screening. I was then two years old, and really the main thing those days was that I wasn’t talking most of the time. The other thing was that I spent lots of time obsessively spinning round things, like the dog’s water bowl.
Having chased me away from dreaded puddles of water many times, sweet things not coming from my mom, she truly had gotten to think that something was up with me. She had a cousin who is also autistic, but she hadn’t made a connection between him and me up to that point. She recalled the experience of spending time babysitting him for a week, “He had been very active, very sensory-seeking. The two of you were not very alike in my understanding of what autism was.”
The first memory that I think I have of my mom is really mostly that she truly was wanting me to say her name. The word was there, though it was locked away in my thoughts. My mouth refused to cooperate with my brain sending the signal to say the word, mama. The sadness that her face always showed was really hard for both of us. These added to having real worries about me. At that time, she and my dad were not living together. He was still living in Virginia and working for a defense contractor, meaning that most of the time, it was just the two of us. In time, he moved to Connecticut, but after the third year of my life.
That time of our lives really was radically different than what came later. The two of us were together all day, though we wanted to go and get out of the house. The things really that she wanted to do were running and telling stories to me. She realized that I was not the type to sit still for a book, but to ride all the miles that she pushed me in a jogging stroller, yes. The real thing these times were to me was watching the world blur past, the wind that made the laughter erupt from my mouth, and the adoring looks she would give me. The thing that these runs were helping in their own way to do was to let her take time to do something she wanted to do. I was affected enough by the running that I eventually told her that I wanted to try it too. Then she threw herself into teaching me to run, and got permission to be my running guide on the cross country team in high school.
There were those that thought that trying to teach me anything was pointless. One teacher told my mom to try to accept that I was never truly going to read or do math more than count to ten. This was having to do with the fact that I had trouble mastering sequencing numbers up to twenty and kept missing the fifteen. This was only because in the trials, great though I wanted to get the trial mastered and move on, my stupid fingers would put it in the wrong place every time. My mom was so steamed at this, she started feeling like there must be more to me than that. This really was because she had found out through trials of her own that I knew much of the colors and the parts of my body. It was then that she really started questioning things, “I had that special ed teacher tell me you could in no way understand numbers, and the proof was what? That you missed one number? I didn’t know how harmful ABA was for you, but I did know it seemed to be worthless.”
I think I got through those long years only because of my family that really was held together with my mom effectively making sure that the time at home was warm and that peaceful relaxing could happen. The meat of the most important philosophy that she had was that she wanted to try to have school be the place I got therapies and education while home was for downtime. There were frequent conversations, though, about whether all the watching of shows I did was making me worse and more autistic. That has nothing to do with making someone autistic, but the thought was that it was the actual reason that I always only said things from cartoons and movies.
The thing that has always most of all been true about autism and me is that I was born this way. I was this autistic way and have not gotten more or less so through the times of my life. These things can feel overwhelming to a parent, though my mom seemed to instinctively understand it already. Her feeling amounted to treating me like I was capable of understanding what most people thought I was not able to. Was it because of what she was seeing in my eyes, was it the stubborn streak she has, or was it because she never thought of having the view of autism as the bad disease other people do. Really, as I think about it, all these things pushed what she thought about me and autism.
Teaching had really affected much of my ability to exercise autonomy over my body and really reduced my tolerance for stress and upset. Things were hard for her, too. Not having the fearless demeanor of her time as a Marine anymore was the result of all the isolated days we spent together. These totally tested her will to get to take some time for herself. Her saving grace for that period was taking those long runs. Just the feelings of having no idea how to help me, or what was going on with me, terribly overwhelmed her.
My mom was often in a spot of having to defend and protect us from unwanted advice. “I remember being scolded by a cashier in a grocery store for buying you toddler meals, because she thought you were five. But you were actually three, and it didn’t matter anyway, because they were the only thing you would eat. I learned quickly to tune most people out.” These remarks hurt us both and though she wanted really to manage to make real friends she felt like she couldn’t trust anyone. Through the years that followed, mostly she has found a few people that understand and choose to see us as the people we are instead of as a family with a type of grave handicap. They take the time to talk to me as they would anyone else. These are the treasured moments in the friendships of life. Really, things like that are why my mom didn’t really fall apart through the tough times.
I think that she bucked traditional thought and common wisdom to head in the way that she thought would help me the most. That then led the way to me typing and being in college. Her unusual handle on the management of the great thing just kind of made sure my life would be more than the future of life in a group home. Though she admits she is far from perfect, having felt the great fierce love and strength that she has for us, that hardly matters. She is the cause of the good things in most of my life.