I’ll be honest with you. The beginning of the Autism journey sucks for parents.
Getting the diagnosis was soul crushing. I sat there while this woman who had known my son for all of an hour reviewed test results and school reports with my husband and me and described my son on his worst day. Then came the bomb. “We are going to diagnose your son with Autism.” The big A that I had worried about his entire life. I left there feeling numb. What is this going to mean for the rest of his life?
As if that wasn’t bad enough, next came the worst part. I had to tell people. My husband and I decided early on that his diagnosis was his business and therefore we would not go public (I did ask his permission before writing and publishing this article). Instead, we told the only people that needed to know like the school and close friends and family. You cannot believe how difficult this is. I had to say it OUT LOUD!. I had to get these looks of pity that I know I had given countless people before. With this look comes platitudes from a well meant place. “You will get through this.” “He’s still him, just with a label.” or my favourite “You are so strong. He’s so lucky to have you.” You nod and listen, but inside, you are a tornado of emotions just screaming to get out.
Any parent that has gone through this knows that the first time you tell the school, it becomes real. You break a little. I felt like I did something wrong. Like somehow, while I was pregnant, I cooked him wrong. You think of how much more difficult things are going to be for him. You worry that with his label will come discrimination and abuse. You don’t want him put in an autism shaped box where his true talents never flourish. It’s terrifying and you have never felt so helpless. You remember all of those documentaries that you watched while thinking, “I can’t imagine having to deal with THAT.” As a parent coach, I’ve had to help a lot of parents through this horrible moment in life. Coping with these emotions while still being a parent is confusing at the best of times.
For me, the next part was the most confusing.
I am a teacher that specializes with EBD students. I had a lot of information already. Behaviour management is kind of my thing. I went into teacher mode with my son. We had charts and rewards and all the stuff that makes things work in a classroom. They work at home, too. I got that kid responding like a robot. He liked the predictability of things. Structure is his friend. I got so wrapped up in the paperwork of it all. Things were efficient and ran like a well oiled machine.
But you know what, home is not school. I am not his teacher. I am his mother. While what I was doing was right, I began to realize something that I had almost forgotten. The most important something.
Then came the parental epiphany:
I love my son.
I love him from the moment I knew he was a possibility. I loved feeling him kicking in utero. I loved kissing his fingers and toes. I loved watching him play with his trains. I loved watching him learn. I love watching him become a young man. When I say I love him, I mean I love HIM. Who he is. They way he is.
More than that, I like him!
I think he’s fun to be around. He is quirky and funny. He will drone on and on about Minecraft for hours if I let him. But, he also likes to discuss the origin of the universe. He has ideas that blow my mind! He hates football and is a bit awkward when it comes to sports. You know what, ME TOO!!!
Within a week or two of my epiphany, my resolve was challenged. Don’t you just love all these little tests the universe puts in front of you to make sure you mean what you say? I was sitting in a cafe with a large friend group and the subject of Autism came up. One mother said, “I couldn’t imagine having to deal with THAT.” Now, I know that this was not meant in a malicious way. She doesn’t know about my son’s diagnosis. She probably only knows sound bites she has heard on TV. She doesn’t work with kids. She had the same thoughts and feelings and beliefs I had before I really understood. She is actually a very lovely person. I know that she just needed to be educated and that I should blah blah blah….
However, at that moment, mama bear came out. I wanted to slap that woman across her self righteous face. I realize the hypocrisy in this. My response to that is…I’m a hypocrite. I’m over it. This woman needed to understand something. There is so much more to my son than “THAT”. He is a scholar, a scientist, a dreamer, A CHILD for Pete’s sake. More than that. He is a good person. He cares for me when I am feeling down. He takes the responsibility of being a big brother very seriously. He cares about the environment and frequently picks up trash on our walks. He cares about being a global citizen and equal rights for everyone.
He finds parts of the world confusing, but so do I. I like explaining social nuance to him as much as he likes telling me about how energy cannot be created or destroyed and so we never really die. (This was an unsolicited conversation he had with me when he was 9. Cool right?)
I sat there giving the appearance of calm on the outside (whilst wrangling the mama bear back in her cage on the inside). I didn’t tell her about my boy. As I said, it’s not my business to share. I did let her know that she would be surprised to know that there are many wonderful things that come with having an autistic child. I’d be happy to give her the benefit of my teaching experience if she was ever interested. She smiled and asked some questions. I gave some answers. It felt good to educate rather than attack. It’s nice to know that ignorance is not permanent. It’s just a lack of information.
As I walked home from the cafe, I really started reflecting on what it means to be the parent of an autistic child. Floods of memories came washing over me. I considered the difference between parenting him and my other children. He needs a bit more time. Some things have to be spelled out in detail. We plan and prepare him for everything. These are all things I give to my other children as well when they need it.
There are benefits to his Autism. His black and white thinking has made peer pressure somewhat of a ridiculous concept to him. I once asked him what he thought about smoking. He’s almost 12 and I know that this is the age that experimentation can begin. He said, “Have you read the studies they have done on what that does to your body? I can’t believe you’d even ask me about that!” and he went on to tell me statistics and medical complications for 20 minutes. He was flabbergasted that I would even insinuate that he would consider being so stupid.
He’s a big dork, like his father. He wears this label with pride. When he latches onto a new character or game or movie, he totally geeks out. He’s the kid that knows the backstory for the most obscure Marvel characters and has no interest in Spider Man. He can tell you more than you ever wanted to know about Mario. This is all coming from a kid that isn’t allowed tech during the week except for school work. He is a sponge for information and I love him for it. If he can’t play it, he reads about it.
There are tough times, sure. But you know what? That comes with life. It comes with every child. I have 3 more children that have their own strengths and weaknesses. I love them and like them for who they are. Doesn’t my eldest deserve the same? I don’t want to change his personality. I don’t want him to be captain of the football team or class president because he doesn’t want any of that for himself. I don’t want him to not be autistic. That’s not who he is. He is going to live an amazing life. Not only do I love him, because he’s my son. I like him because he’s him.
Parent Coaching is an investment in the health and happiness of your entire family. You learn how to set up your home, yourself, and your children to be successful and happy. Would you like help in becoming the parent your family deserves? For more information, click here.