THE CIRCLE OF AUTISM – PART 2

THE CIRCLE OF AUTISM – PART 2

Let me preface this blog post by saying that the stories below are not intended to point fingers at other people or make people mad at the people in the stories.  In fact, I worried about including one of the stories below because I was worried that maybe the person would read this and be mad at me.  But a good friend reminded me that this is Presley’s story, this is part of his life – and if I want to bring awareness to this thing called autism, I need to include it all.  So, here it is.

 

The Circle of Autism – Blog – Part 2

 

 

The summer before Presley’s third grade year, after we had switched from psychiatrist to psychiatrist to try to find someone who knew what they were doing, Presley went through three hours of testing to test for ADHD and Autism Spectrum Disorders. After the results were in, his psychiatrist set up a meeting with Bob and me to go over them. On August 6, 2012, after trying to figure out for over three years what was going on with Presley, we discovered that he had Asperger’s Syndrome, which is an Autism Spectrum Disorder. When she explained the symptoms and diagnosis, I immediately knew that she was right. It was like they were describing PRESLEY!!! I have no idea why other psychiatrists couldn’t figure it out. He was textbook. My first feeling was anger – I felt like Presley was shortchanged the last 3 years of his life. I felt like kids and teachers had already made their judgment about Presley and that maybe it could have been different had they figured it out earlier.

But I quickly realized that anger wouldn’t help me at all – and it wouldn’t help Presley at all. We finally had an answer, a diagnosis that made sense, and now we could move forward. I asked her if she thought I should tell Presley that he had Asperger’s. She said to tell him, but to only go into more detail if he asked for it. As I left her office, I remember climbing into my steaming hot car and just sitting there in the heat. It’s crazy how one word can change everything, isn’t it? It’s so weird to know that your child has something that can’t be changed – that a child with autism will be an adult with autism. There’s no medicine to take that will rid his body of it, no magic pill to make it all go away. As questions about his future started flooding my head and tears began flooding my eyes, I started praying out loud. I cried and talked and maybe even yelled a little. I had so much guilt – guilt because of the punishments that I was thinking about that went back to his preK; and now I knew that it wasn’t his fault that he reacted the way he did. It was a developmental disability. A disability, not a behavior issue.   And so the guilt of the spankings that he had received over the years when he would say “I couldn’t help it Mommy”, just literally overtook me. But I couldn’t take it back now.

Let me sidebar a second to say that just because Presley has Asperger’s doesn’t mean he doesn’t get disciplined – it’s just that the discipline looks totally different than it used to. What we once thought was a behavior problem we now knew wasn’t at all. He absolutely couldn’t help it. Oh the mom guilt…oh the mom shame. It was big and it was overwhelming.

So there I am in my car, burning up, crying and hollering at God and feeling like the worst.mom.on.the.planet. How could I ever forgive myself? And then suddenly, I heard from God. Not audibly, but a train of thoughts popped in my head that I know for sure weren’t mine – and since I was talking to Him, I know that it was Him talking back.

God said that He CHOSE Bob and me to be Presley’s parents. He said that He gave Presley to us because He trusted us with him. He said that He knew that Bob and I would advocate for Presley, defend Presley, and do everything in our power to give Presley the best life possible.

I stopped crying, stopped hollering, and turned on the air in the car so I could begin to breathe. I sat and pondered what God just told me. I just sat quietly and listened to those words repeated in my head. I let His words flood my spirit. And just like that, my guilt and shame slowly seeped away…and peace began to fill me. Instead of feeling guilty and full of shame, I felt special – God picked us! Me!!! Little old Melissa McCain Cole from West Memphis, Arkansas was handpicked by God Almighty for this task – to parent this precious, special gift from Him. And God knew that it would take someone who wouldn’t be afraid to get redneck on folks if need be; someone who would schedule meeting after meeting and talk to coach after coach and teacher after teacher to make sure that this child was understood. And so out loud in my car, I promised God right then and there that I would do exactly that. I made a promise to God to do everything in my power for Presley because He had trusted me with him.

I got home and went upstairs where Presley was playing the Wii in the playroom. I told him that I had gotten the results from the testing that he had gone through earlier that summer.

“How’d I do mom?” He asked. (Ha! How precious.) I explained that it wasn’t for a score, but that it gave us a diagnosis that explained why he does what he does and sometimes ends up in trouble.

“It’s called Asperger’s syndrome, which is an Autism Spectrum Disorder.” – M

“Is that bad?” – P

“No, but it’s something that you will always have. It explains a lot about you. And Daddy and I think that you are absolutely perfect.” – M

“Ok, can I keep playing the Wii now?” – P

“Absolutely baby.” – M

I think that went pretty well. Oh that sweet baby.

 

 

Some symptoms of Asperger’s syndrome are:

 

  • Not pick up on social cues and may lack inborn social skills, such as being able to read others’ body language, start or maintain a conversation, and take turns talking.
  • Dislike any changes in routines.
  • Appear to lack empathy.
  • Be unable to recognize subtle differences in speech tone, pitch, and accent that alter the meaning of others’ speech. So your child may not understand a joke or may take a sarcastic comment literally. And his or her speech may be flat and hard to understand because it lacks tone, pitch, and accent.
  • Have a formal style of speaking that is advanced for his or her age. For example, the child may use the word “beckon” instead of “call” or the word “return” instead of “come back.”
  • Talk a lot, usually about a favorite subject. One-sided conversations are common. Internal thoughts are often verbalized.
  • Avoid eye contact or stare at others.
  • Have unusual facial expressions or postures.
  • Be preoccupied with only one or few interests, which he or she may be very knowledgeable about. Many children with Asperger’s syndrome are overly interested in parts of a whole or in unusual activities, such as designing houses, drawing highly detailed scenes, or studying astronomy. They may show an unusual interest in certain topics such as snakes, names of stars, or dinosaurs.
  • Have delayed motor development. Your child may be late in learning to use a fork or spoon, ride a bike, or catch a ball. He or she may have an awkward walk. Handwriting is often poor.
  • Have heightened sensitivity and become overstimulated by loud noises, lights, or strong tastes or textures.

 

 

 

Presley has just about all of the symptoms listed above. As he’s gotten older and matured, many of them have dwindled; however, the one that is the biggest concern for us is the social aspect. It doesn’t come naturally for Presley to have a back and forth conversation – it’s usually pretty one-sided (the one side being him). For example, he will just walk up to a group of kids who are already involved in a conversation and start talking about a thought that was in his head – it could be the Nascar race from the previous weekend or even an Arkansas football game from the 1990s. And the kids just stare blankly at him, having no clue what he’s talking about. But Presley doesn’t read facial expressions (part of autism), so he doesn’t understand that they don’t get what he’s talking about, and so he continues to talk. It can be painful to watch. My husband coaches almost all of Presley’s sports teams so he can be there in those situations to walk over and redirect Presley’s topic or explain to the group what he’s talking about.

He’s also very literal. We have to break down jokes for him so he can understand the punch line. And even then, he’s like “Well that doesn’t even make sense.” He doesn’t get what it means to say, “It’s just a joke!” He reads a lot of my old Archie and Veronica comic books, which really seems to help in this area. If he hears a joke at school, he’ll come home and tell us and we’ll break it down for him – he’s beginning to get it a little better, but it definitely isn’t natural.

Presley plays tackle football and basketball, so he has ‘friends’ on those teams.   Playing sports is NOT typical for someone with an Autism Spectrum Disorder – they are not usually physically coordinated. But I believe that sports were so engrained in his DNA that it overrode the Asperger’s – both my husband and his dad played football at the University of Arkansas. All of his teammates seem to like him, he gets invited to most of their birthday parties, he isn’t secluded at practices…BUT, as I type this, it’s been four years since he’s been invited to someone’s house to play. Four years…FOUR YEARS…1460 days. The worst thing for me is to hear him ask (many times with crocodile tears in his eyes), “Why doesn’t anyone invite me to their house, Mom?” He watches as his brother and sister both go to people’s houses to play and have sleepovers, but it just doesn’t happen for him. And how on earth do I respond to that question of his? It’s gut-wrenching, heartbreaking, knock-the-breath-out-of-you pain for a Momma to hear from her child. “I don’t know, baby. If I was a boy your age, I’d DEFINITELY invite you over to my house.” That’s all I got. And unfortunately, I don’t’ think it’s enough to really ease his disappointment about it. We invite people over to play with him; we have sleepovers; we have sleepovers with 5 kids; I make cookies; I order pizza; I get Chick-fil-A for breakfast; I buy lots of new Nerf guns and bullets; I try everything in my power to make sure those kids who are here with Presley have a great time in the hopes that they will invite him over to their house…reciprocate, right? But it just doesn’t happen. And I KNOW that those kids have fun over here! They laugh and play and smile and I can tell that they genuinely have fun. The conclusion that I’ve come to is that when other kids are considering whom to have over to their house, Presley isn’t at the top of the list. He probably doesn’t make most kids “Top 5”. I honestly don’t think that it’s because they don’t like him or anything like that. I just think that because of the Asperger’s, and his inability to really ‘connect’ with people on an individual level, he ends up being left out. And it flat.out.sucks. And it pisses.me.off. Dadgummit. This kid is awesome; this kid is loyal; this kid is kind; this kid is fun; this kid is compassionate – SOMEONE PLEASE INVITE THIS KID OVER FOR THE LOVE OF PETE!!!!!!!

The last time he was invited for a sleepover, 4 years ago, it didn’t go so well, but it wasn’t really all Presley’s fault. The boy was on our baseball team and I was ‘friends’ with his mom. We would sit together at games and talk while watching the boys play. We had good conversations about parenting and cooking. I really enjoyed hanging out with her. It was before we had the Asperger’s diagnosis, but I explained Presley’s situation to her – we talked about it at length. She was so kind and understanding and talked about what a great kid he was. She seemed to ‘get him’. She knew what triggered him and understood it and still loved him in spite of it. Her son came to an overnight church camp with Presley – Bob was their counselor, of course. He and Presley were becoming good friends and it felt so good. One night, they invited Presley and my daughter, Bella, over for a sleepover. They also have a daughter who is Bella’s age, so they thought it would be fun. They have three kids and then added two of mine for the night. Presley was beside himself with excitement.

First of all, he had been talking for two.weeks.straight about a Wii game he was dying to play. And secondly, he had been invited for a sleepover!!! The mom and Presley’s friend knew how badly Presley wanted to play that Wii game…they both listened patiently as he talked and talked and talked and talked about it. People on the autism spectrum tend to hyper-focus on things – and this Wii game was something Presley was hyper-focused on for the two weeks leading up to the sleepover.   In fact, Presley was disappointed when the mom asked me to drop Presley and Bella off at their neighborhood pool instead of their house. He said, “What about the Wii game?!?!?!” I told him that as soon as they finished swimming, I was sure they would head to the house to play the game. He was upset because not only was he not getting to immediately go play the game he had been waiting weeks to play, but also he’s not a huge fan of swimming. He doesn’t like water on his face – so that kind of makes swimming low on his list of favorite things to do.

As I drove off from the pool and kissed Presley and Bella goodbye, I could see the disappointment on his face, but underneath that he was so excited to be with a friend. I was a little nervous when I left, but I totally trusted the mom, because she knew and understood all about him. Everything would be great.

Bob and I went to dinner with some clients of his at my favorite restaurant. This steak restaurant is the best in the history of all steak restaurants. It’s been confirmed…not really, but I just know it is. Anyway, my cell phone rang at about 9:00 and I saw that it was the mom calling. I stepped out to take the call. When I answered, she said, “Melissa, I think you need to come get Presley. He’s really upset that he can’t play the Wii and he’s locked himself in a closet and won’t come out.” My stomach sank straight to the floor. I went back to our table and told my husband that we needed to go immediately. I told him the little bit of info that I had gotten over the phone as we drove to their house.

When we walked in, I saw Presley sitting on the couch and it was obvious that he was extremely sad and upset. He looked at me and said, “Please don’t make me leave. I want to spend the night here.”

“Come on darlin’, we’ll do it another night. Bella, grab your stuff and let’s go home, ok? “ I said.

The mom spoke up, “Let Bella stay! We’ll bring her home tomorrow.”

Not even thinking it through because I just wanted to GET OUT OF THE HOUSE, I said ok.

As the three of us climbed in Bob’s truck, Presley started sobbing…not whining, not crying, SOBBING…like shoulders-heaving, couldn’t-catch-his-breath sobbing. It was so awful. I put him in the front seat with me and just let him cry on my shoulder with my arms wrapped around him tightly. He couldn’t even tell us what happened because he was so upset. That night, he slept in between Bob and me in our bed and we just snuggled him.

The next morning when we woke up, I had missed the text from the mom late that night explaining her side of the story. She said that in hindsight, it wasn’t a good situation for Presley. She realized that she had done too much, kept him up too late, and had too many people. She said that after they came home from swimming they played with the neighborhood kids for about an hour. Then they came inside and he was FINALLY going to get to play the Wii game that he had been waiting forever to play, but the batteries in the Wii remote were DEAD. She said that Presley said, “I’ve been waiting all night to play this game and now because of your stupid mom, I can’t play!” And then she said he went and locked himself in the closet.

First of all, I feel like given the circumstances, Presley was basically set up to fail that night. He had done way too many things, it was way past his bedtime, and the one thing that he’d been waiting to do for weeks didn’t come to fruition. Secondly, I’ve never heard Presley call a person stupid. Ever. Maybe he did this time, but I’ve never heard it before.

When I asked Presley about what happened, he said that he went to his friend’s house in hopes of playing the Wii game, but they did everything except that. He said “Then mom, when I realized that the batteries were dead in the remote, I asked his mom if they had anymore batteries. She said that it was too late to look and that we could play later because it was time to go to bed.”

I asked him if he said that the mom was stupid.

“NO!!!! I said I needed stupid batteries.”

“Why did you lock yourself in the closet?” I asked.

“I didn’t lock myself in – but when she told me that she was going to call you to come get me, I went in the closet because I didn’t want them to see me crying.”

Knife.In.Stomach. So basically, this mom, knowing how badly Presley wanted to play the Wii game and understanding that Presley had a different focus about it than the ‘typical’ child, had invited him over, made him wait all night to play and then wouldn’t give him new batteries so he could play, even if just for a little bit. Then when he got upset, she called me to come pick him up from the one sleepover he had ever been invited to. And she said that he had called her stupid (maybe it was a misunderstanding). And I let my daughter, who had sleepovers ALL THE TIME, stay at the sleepover that Presley was asked to leave!!!!!!!!! It literally makes me want to puke right now just thinking back to that feeling and realization of what had really happened – and being so disappointed in how I had handled it…and remembering the raw pain on Presley’s face. I should have made Bella come home too. Actually, I shouldn’t have even let her go in the first place. It should have been Presley’s night! This is one of those moments that I’ll never really forgive myself for – I didn’t do my best in advocating for my son. And the scar that is probably left with him has a little to do with me. That’s such a hard pill to swallow, y’all.

I replied to her text and explained Presley’s side of the story and said how sorry and remorseful he was, because he was. He told me he was sorry because he said her voice was mean so that he had obviously done something wrong. I went to get Bella early – it was pretty awkward when I walked in. I thanked her, but we didn’t speak at all about what happened the night before.

Bella confirmed Presley’s story in the car on the drive home. Presley can have a tough time trying to retell a sequence of events, so I wanted Bella to tell me. She was really upset for him. She said, “Momma, he waited all night to play the game and she wouldn’t even get him batteries so he could play it.”

The same feeling of betrayal that I had felt with Presley’s soccer coach flooded through me again. I had let someone in on our private lives, divulged personal information and struggles about Presley, and thought that I found someone who would love him in spite of that, but I was wrong again. Let down. Disappointed. Betrayed. Once we got Presley’s Asperger’s diagnosis, I texted her to let her know. It explains so much of what happened that night, so I was hoping maybe she would give him another chance. But that didn’t happen. They had already decided to shut him out. Another betrayal.

They never invited Presley over again. And can I tell you that, to this day, Presley still asks me if we can invite that friend over? It’s been years, but who knows why he still thinks about him? They aren’t even in the same grade anymore. He never sees him. It puzzles me and saddens me both at the same time.

And ya know, it’s really interesting, because I’ve never heard Presley say a bad word about another kid – ever. One day as we were planning his 10th birthday party invitation list, I said, “Maybe this year we shouldn’t invite all the boys in your class. Maybe we should just pick a few, the ones who have invited you to their birthday parties.” But Presley insisted that we invite all of the boys from his class AND his football team. I guess that he knows what it feels like to be left out and he doesn’t want anyone else to feel that way because of anything that has to do with him. He said, “Mom, Todd really wanted to invite me to his birthday party, but his mom only let him invite 4 kids. Todd told me that I was his 5th pick, so that’s why I couldn’t go.” I asked him if it made him upset that he was Todd’s 5th choice of a friend. His response was, “Mom, Todd’s a good kid.” He always sees the best in everyone, even when I don’t feel like they deserve it. It’s hard to navigate because I want to be brutally honest and tell him that obviously Todd didn’t like him enough and that he’s not really a good friend, but I also don’t want to crush his spirit. Again, because of the Asperger’s, he just doesn’t get that social aspect and the clues and cues that are innate for the ‘typical’ child.

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