THE CIRCLE OF AUTISM – PART 1 BLOG

THE CIRCLE OF AUTISM – PART 1 BLOG

This is the first part of a chapter I wrote in a book – the chapter is called The Circle of Autism…I will gradually share portions of the chapter.  Here it is:

 

2008 – “Melissa, I’ve been teaching Kindergarten for 24 years and I’ve never had a child like Presley. There’s something going on.” That was the phone call I received that would forever change the direction of Presley’s life and would thrust our family into a circle that I had not signed up for…. the circle of Autism.

Presley is mine and Bob’s first child – so nothing really stood out to us as ‘different’ when he was a toddler because he was all we knew as first-time parents. I had no idea that other kids didn’t play with only one toy for years at a time; that most ‘typical’ children didn’t line their 56 cars up and know if you switched the order of two of them; that other kids didn’t literally scream every.single.bathtime. because of water on their head until they were 5 years old; or that they didn’t freak out so badly at haircuts that they would literally puke in the lobby or be turned away because they were “too much of a liability”.

We thought all of this was typical behavior of any other child his age because we knew no different. That is, until that phone call.

Mrs. Davis proceeded to tell me how Presley would leave his ‘center’ at center time to go tell someone else in another center that they were doing something wrong. And if someone broke line at the water fountain, instead of saying, “Hey dude – you broke line”, Presley would walk up to the person, grab them by the shoulders, and drag them to the back of line. Then he would go get back in his spot. And in his eyes, justice was served. Dude broke line, so dude needed to be moved to the back of the line. End of story…black and white…there’s no gray with Presley. Instead of communicating with the other child about the issue, Presley just acted on it. And then he got in trouble…and he never understood why.

That was in Kindergarten – and it wasn’t until the summer before he started the third grade that we got the correct diagnosis of Asperger’s syndrome. He was misdiagnosed with OCD and ADHD (which I knew wasn’t right – out of like 15 symptoms, he only had one – impulsivity).

In between Kindergarten and third grade, we had some tough times. Presley started sports and it was really hard for him to be on a team. At soccer, he would literally go sit down and fold his arms and pout if ANYONE ELSE ON HIS TEAM scored a goal besides him. Not just if the OTHER team scored, but also if someone OTHER THAN HIM scored on his team! It was so embarrassing. He just didn’t get it.

As he got a little older, around 7 years old, he started playing soccer a couple of times a week on a team that wasn’t a competitive team, but they also weren’t your typical ‘rec’ team. At the end of each practice, the coach would line them up in two lines and have them race down and back. So each child just raced against one other child.

To Presley, first place was the ONLY option…First in line at the classroom door, first to the lunch table, first to the top of the stairs, first to the bathtub (you get the point). So, racing against someone was a huge deal to him. Second place was simply first loser to Presley.

At the end of one particular practice, I was closely watching him because I knew this was a very vulnerable situation for him. He and the boy he was racing took off down the field and turned to go back – but the other boy didn’t go all the way down to the line; he turned to head back to the finish line before they were supposed to, so he beat Presley. When they got to the back of the line, Presley yelled “Cheater!!!! You didn’t touch the line!” And to my absolute horror, I watched as the boy drew back his fist and punched Presley in the face. A 7-year-old just punched my child in the face!!! Presley pushed him back and I jumped out of my chair and ran over screaming…I have no idea what I was screaming, I just remember screaming. I grabbed Presley, who was totally stunned, and walked off to check on him and calm him down.

To preface, this was our second season with this particular coach. I totally trusted him. He knew that we were going to a psychiatrist to try to figure out what was going on with Presley. He knew that if Presley misbehaved at practice, he was punished at home – even though we knew that there was probably a real reason for the things he did.  I had allowed the coach into our private lives. I had explained that my child was different and I didn’t know why yet. He knew how it hurt us, and I appreciated his support. There were times at practice where Presley would be aggressive with a kid, but it never went unpunished or blown off. Bob and I would ALWAYS reprimand or discipline him…despite the fact that we were pretty confident that he wasn’t just being mean.

So back to the story – I was standing on the field with Presley, trying to calm him down from being punched smack in the face. The coach’s wife came over to me and said, “I just can’t believe that kid’s dad gave him a high five!” Dumbfounded, I said, “What are you talking about?” She said, “Ohhhh, I thought you saw it – after the kid punched Presley in the face, he walked over to his dad and his dad gave him a high five.” I froze. I was speechless. I was heartbroken. I almost puked. WHO DOES THAT?!?!?!

As our coach slowly walked over to me, I was totally expecting him to sit both of the boys down and talk about what happened and make them apologize to each other – I mean, isn’t that usually how it goes? But instead, he just looked at me and said, “Melissa, Presley has been pretty aggressive lately.” I just stared at him. That was it… end of sentence. He didn’t ask if Presley was ok; he didn’t ask what had happened to instigate the punch, he didn’t ask who started it, nothing. He just walked over to me and told me that at the last couple of practices, Presley had been aggressive. So just because Presley had been aggressive, he was allowed to be punched in the face with no repercussions? No apology? I felt so alone, so embarrassed, so sad for Presley – and so betrayed. I had allowed this coach into our private lives, thinking that he cared about Presley, but I was wrong. He let me down big time – but more importantly, he had let Presley down big time.

I took Presley by the hand and did my best not to cry in front of everyone. “Come on baby”, I choked out as we quickly walked to the car. I had barely closed the car door before I dialed Bob’s number. When he answered the phone, I was sobbing so hard that he couldn’t understand what I was saying. It took me forever to get the whole story out. I was absolutely hysterical. The enormity of both what happened and what DIDN’T happen hit me hard as I told the story. Bob immediately texted the coach to find out which kid had punched Presley and what the dad’s name and number were. He wanted to call the boy’s dad to ‘chat’. He just couldn’t believe that the other child wasn’t reprimanded by the coach AT ALL, and was given a high five by his dad for punching our child in the face after he had called him what he was – a CHEATER! He had cheated – I saw it with my own eyes. I don’t think that Presley should have called him a cheater necessarily, but Presley didn’t deserve to be punched in the face either. The coach didn’t think it was such a good idea to give Bob the dad’s number. So that was the end of that.

Needless to say, we never went back to soccer. Our trust was broken and we were devastated. The coach never called, never asked about Presley again – it was as if we were never even part of the team. I felt betrayed and began to wonder if maybe for most of Presley’s life, we may end up feeling abandoned and alone. And although we didn’t know at the time that Presley had Autism, I knew that whatever this circle was that we were a part of sucked…I didn’t choose it for Presley or for us.

Over the years, some similar stuff happened at school. None of his teachers ‘got him’. In fact, his first grade teacher called me at home one day to tell me that Presley smelled stuff – in the hall, he would smell the stuff in the bins that they walked by; he smelled her skirt one day; he smelled the pages of his book. I was like, “Sorry, but he likes to smell stuff.” Really? What did she want me to say? I guess she was basically calling to tell me that she thought he was weird.

But one person at school DID ‘get Presley’ – the vice principal. One day I was at home and the phone rang. My heart sank when I saw it was the school. Here we go again. When I answered, the nurse was on the phone and said that Presley had thrown up. Sad to say, I was relieved that it wasn’t a call to say he had hit someone. I told her I was heading up to the school immediately to get him. She said, “Well, I think he made himself throw up on purpose.” Ummm, excuse me? He absolutely hates to throw up. What on earth was she talking about? As those thoughts were running through my head, someone else got on the phone.

“Hi, Melissa. This is Lindy Risenhoover, the vice principal. “

“Hi”, I muttered.

“Look…Presley is fine. Here’s what happened – Presley was sitting next to a boy at the lunch table. The boy’s green beans were touching his macaroni and cheese, so Presley asked him to take his fork and separate them. The boy said no, so Presley took his hand and physically scooped up the green beans and threw them on the floor. A cafeteria volunteer saw what happened and told Presley to get on the ground and clean it up. When Presley saw it on the ground, he threw up. If it’s ok with you, I’m just going to have Presley go get his work for the rest of the day and just sit in the office with me. He just seems…broken.”

‘Broken’…I’ll never forget that word coming out of her mouth. She didn’t use the word ‘aggressive’ or ‘bully’, but ‘BROKEN’. Hot tears streamed down my face as I hung up the phone. That was the beginning of a relationship between Mrs. Risenhoover and Presley that I will never, in all of my life, forget. You see, she ‘got’ Presley. She took the time to get to know him – and she fell in love with him. She knew what triggered him and how to respond. She understood that almost always, when he did something wrong, that it stemmed from something more than a behavior issue. She told Presley that if he ever needed a break from his classroom or the playground, that he was always welcome in her office. And let me tell you, he took full advantage of that. He loved knowing he had somewhere safe and calm to go, and that someone who cared for him would be waiting. But he didn’t abuse it. She could tell when he was having an ‘off day’ (what we call them); and he would pack up his books and go sit with her in her office, sometimes for 30 minutes, sometimes for the rest of the afternoon. She defended him – she advocated for him – and as I type this, emotions stir inside me as I realize how different his life could have been had she not. He could have been labeled a troublemaker, a bad kid, or even worse. But for the first time EVER, we had someone on our side; someone who took the time to understand him. And it felt so good.

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