I recently read a nonfiction book about Autism. It was called, “In the Key of Autism.” It’s a new book that was released in January of this year. This brings me to the next topic of conversation. Do you know why they call it Autism Spectrum Disorder? That’s because so many people meet the criteria for Autism and it’s such a broad diagnosis. I’ve seen things like, “But you don’t look like you have Autism!” When someone with Autism created a YouTube channel.
That’s why mental health disorders are so complicated. “But you don’t look like a person with BPD, Bipolar, Autism, or Anxiety.” Looks can be deceiving. We only see a small fraction of their lives. We don’t see the entire picture. We don’t know what a person does behind closed doors. We don’t know their struggles and pain. We just assume that they look for the most part, healthy. When people think of Autism, they think of the character from Rain Man, starring Dustin Hoffman.
Come to find out, Asperger’s doesn’t exist anymore in the book DSM-5 (Diagnostic and Statistical Manual for mental health) as of 2012. They included Asperger’s in the Autism Spectrum realm. There are many different levels of autistic children. Some can function with social problems, and some need major assistance.
Lucky for me, I’ve been around kids with autism my entire life. I was blessed with being around quite a few kids my age with Autism. I know what it looks like. At least, I should know, but I didn’t. Today, I cried in the car. Tonight, I witnessed Autism. I witnessed it, and I don’t know why I ignored it for so long. I feel like the worst mother on the planet.
I pushed my eldest son to watch the fireworks with us tonight. We always avoided the fireworks because he would scream. My son is now 11, almost 12. A piece of me died tonight because I was so focused on my problems, I ignored his. How could I be so selfish? I can’t forgive myself right now.
Let me start with a familiar story. I had my eldest son, Zachary in 2005. He turned sunny side up, and was breach at the last-minute. I had to have a c-section. It took the OBGYN, three tries to pull him out. He was really stuck. When he was born, he reminded me of a Pit Bull because he was so mad!
The first couple of years were okay. But with Zach, he sleeps a lot. One day, he was playing with his toys. He lined up all of his toys in a row, just staring at the wheels. He would lay his head down on the floor and play with each car, one by one. But, he would always put his cars back in a straight line. If you messed up his line of cars, he would freak out. He would scream at me. His room always has to be organized. He can’t stand things out-of-order. I thought, maybe he has OCD like me. Cool! Cool, but not cool.
I made the mistake of having siblings. For the longest time, Zach was the only child. He did sleep a lot in the beginning. This is when things change. After 3, he was still rocking himself to sleep. He is now 11, almost 12, and he’s still rocking himself to sleep. Not only is he rocking himself to sleep, he makes loud noises when he’s trying to fall asleep. I did ask the pediatrician about it, and they said it was normal. I used to rock myself to sleep a long time ago, but I had bad ears. I noticed that when I’m in a lot of pain, I tend to still rock even today. Zach’s ears are normal. He has no fluid or ear infections.
Another thing I’ve noticed within the past two years, he will speak a sentence and repeat half of the sentence under his breath. Now, I have Bipolar I. So, for a while there, I thought I was hearing things. I have a lot of auditory hallucinations. I think I hear something, but it was nothing. I thought I was losing my mind and having a manic episode until someone else confirmed it. I need to tape him doing it. He does it when he’s excited about something or if he did something wrong. That’s how I know when he lies. A mother always knows. When he runs, he still flaps his hands. When he’s excited, he flaps his hands.
When we were sitting there watching his fifth grade graduation, Zach walked differently from the other kids. Hunched over with his hands together. He never looked at the people. He didn’t say anything.
Now Zach is wicked smart. This kid can get straight A’s. But he has trouble with his peers. When they don’t answer correctly, my son speaks up. This has led to vicious bullying. Zach also corrects his teachers when it comes to science. And when Zach speaks, he sounds like a college kid. People are often shocked with the language and words he uses at age 11. He is also a very fast reader. I cannot talk science with him because he will sound like a boring professor. He often talks about molecules, atoms, protons, neutrons, the solar system, and things I’m not equipped to answer. Let’s be honest, I failed science horribly. For the past year, he’s been obsessed with geography. He can learn about other countries in a week. He now draws maps of other countries. Like, Canada. He knows more about Canada than I do. He literally draws out their maps, remembers the providences, rivers, lakes, and oceans. And if I get an area wrong, he corrects me. I failed geography too. I’m lucky to get out of my own state in one piece. That’s how bad my geography is. He’s got it down. I’m blown away with his knowledge. He leaves me speechless.
Last year, a student didn’t answer how volcanoes are created. Zach had to speak up and answer the question. He said this to me. “That kid was stupid! How do you not know how volcanoes are created?” Yikes! I told him that was inappropriate to think that way. Some kids just think differently than you do. And he corrected his teachers this year! Not to mention, he has a complex that if you’re dumb, he’s going to call you out on it. It’s like, I know it all. How could you not know this and that? I’m freaking out here. I’m worried that if he says the wrong thing to someone, they will hurt him. Zach is not a fighter. He’s obsessed with complex games that I can’t play.
As for popular culture, he hates it. He doesn’t watch sports or anything kids his age watch. Zach prefers the Science channel. He can watch that all day long. It’s not harmful. Even I learn things about science. It isn’t just him, our second son Danny is the same way. Those two talk about science and it’s like they speak a different language that I don’t understand. I have them explain it to me because I am ignorant.
Sensory issues? Music. Zach and Danny hate music. But I love music! I live for music! I can tell you the title of a song and the artist in less than two notes. I can tell you the year it came out. My obsession is with music and books. I also have my music, movies, and books arranged in alphabetical order. I can’t stand it if anything is out-of-order. Zach can’t stand anything that has heavy metal or loud thrashing music of any kind. Danny is the same way.
Back to tonight. I took my entire family to watch the fireworks. Everyone was okay, except for Zach. Tonight, I watched him cover his ears and rock himself on the bleachers where we sat. He was humming to himself and rocking. He had tears coming down his cheeks. Tonight, I felt like the worst mother in the world. I managed to get him off the bleachers and helped him in the car. It took an hour to get him to calm down. I cried. I’m still crying now. Now I know why we avoid the fireworks. Danny was okay but Zach wasn’t. He was in pain. It hurts me more than you know.
Zach and Danny struggle with social settings. I thought it was social anxiety. It isn’t that. It isn’t that at all. If a teacher calls on Danny, he will get upset. He doesn’t enjoy speaking or answering questions. He will shut down on us. Danny is still in speech therapy. He just turned 9 this year. He has problems with his ears, and I assumed it was due to his ears. This kid can look at a diagram and put things together with just one look at the diagram. Like Zach, Danny also is wicked smart. But unlike Zach, Danny will also shut down if he feels that he can’t do it, or if people tease him. Neither kid enjoys jokes. They can’t understand jokes. They take jokes as a personal attack.
With Danny, everything has to be Batman. Batman clothes, Batman shoes, Batman jacket, and toys have to be Batman. I can’t get Danny to wear anything else but Batman. Zach and Danny have food avoidance issues. They don’t like certain foods. When Danny is in a mood, he won’t eat anything else but a specific type of food like bacon. It’s a fight just to get him to eat other foods. I’m reduced to tears over food.
But! Because of this book, I made an appointment with the pediatrician for July 25th for an Autism consult. They need it. I’m not devastated. Why would I want to change them? I want them to get the help they need. They are great kids. Just like me, they have triggers too. I want help with working on their social skills. They are terrible with their social skills. I have none, and I don’t want them to be like me. I think I can be a little condescending like Zach and Danny. But unlike me, I want them to get the help they need. I was so invested in my issues that I didn’t see the big picture. Here I am being diagnosed with issue after issue. I fell into depression for a while. I woke the fuck up and realized my kids need help. My issues can move to the back burner. I will do anything not to have my son do that again. Sensory issue? Is that the same as only liking cotton and not jeans? Bright lights and loud noises? Man, I fucked up as a mother. I should have noticed the signs. I was so oblivious! When I read this book, I cried. I’m like that reminds me of Danny and Zach! Zach nailed every symptom the book listed. Tonight, I apologized to him. Putting my kids in pain isn’t something I ever want to do. How could I be so stupid? I recognize Autism with other kids but not my own? Come on now! Get your shit together! That’s me yelling at me for you. Here is the book, “In a Different Key.” I recommend everyone read it. It’s good, and the authors opened my eyes. This is by John Donvan & Caren Zucker. They also have loved ones on the autism spectrum disorder. So, this is not from authors, who don’t know what Autism is like.
Psst… it’s okay to be imperfectly perfect. Tonight, I failed as a parent. But tomorrow is a new day to get it right.