Shame... just... shame
I am fucking ashamed of myself. Stick around for the why after the exposition!
When we decided to open up about our sons Autism diagnosis, we did so because we wanted to share what this looks like. It is a form of evangelization, a form of normalization and a form of therapy for our family. We love our community and we draw so much strength from it that we felt it was time to reach out and start sharing this topic. It has been the biggest part of our lives for a little while now, and it didn’t make sense to keep it in the shadows. It felt like a secret and we didn't want to keep it hidden any longer.
This post came from a short conversation I had with Mary. We were talking about where Charlie’s strengths are, and what areas he needs support in. She mentioned that she is glad Charlie doesn’t have constant and big meltdowns in public, because that would make it more time consuming to do errands. She said this and my first thought was “Wait, no, we do have that issue”. And then I realized…
I am fucking ashamed of myself.
For years I have avoided taking my son places in public. I have done so on many occasions. I never knew if he would be having a "good" day or a "bad" day, or when one would become the other. Would he start screeching and yelling because someone bumped into the cart at the store? Or would it be an item out of stock? It embarrassed me and caused me to make quick exits on a lot of occasions.
I don't want to make it seem like a constant issue, but rather an unpredictable one that I couldn't figure out how to handle. Charlie responds so well to really simple behavior correction techniques that this should have been an indicator of an issue. He is genuinely a good person and everything else in life just takes small nudges the right direction. But these meltdowns could swing in from left field and be triggered by trivialities.
As time went on I avoided certain situations I knew would be filled with triggers. This has been obviously wrong to me, because I felt guilty making those decisions. I feel guilty admitting to them now. Hopefully publicly discussing my sins will help me continue working towards absolution for my transgressions. Hopefully being open about this will make some parent somewhere know that they aren’t alone in this shame, that it is part of the situation we find ourselves in, and that the best path out of our poor behavior is to confront our bullshit head-on.
The power of knowledge is shocking. I have been reading so much literature about family's with an ASD member. I understand that my little hero has no control over these moments right now. The experience within him is too large and his training and skills at coping too undeveloped. I know they are more painful and harmful to him than anyone. Talking to him, I know he would be the first one to wish to prevent and stop them. I shouldn't be embarrassed about his neurological avalanches, I should only be embarrassed for my own cowardice. And I know now that the public opinion of strangers is a shitty reason to avoid going out with my family and experiencing life.
Hell, I don’t even like most strangers. Or non-strangers. And I want my son to feel loved and supported in those moments control has left him. I want that WAY more than I want to preserve ego in front of strangers.
I wish I could say that there was an immediate and total change in my behavior, but bad habits are bastards. It's a process, but slowly I am unlearning these old patterns and putting down new ones.
When we decided to open up about our sons Autism diagnosis, we did so because we wanted to share what this looks like. It is a form of evangelization, a form of normalization and a form of therapy for our family. We love our community and we draw so much strength from it that we felt it was time to reach out and start sharing this topic. It has been the biggest part of our lives for a little while now, and it didn’t make sense to keep it in the shadows. It felt like a secret and we didn't want to keep it hidden any longer.
This post came from a short conversation I had with Mary. We were talking about where Charlie’s strengths are, and what areas he needs support in. She mentioned that she is glad Charlie doesn’t have constant and big meltdowns in public, because that would make it more time consuming to do errands. She said this and my first thought was “Wait, no, we do have that issue”. And then I realized…
I am fucking ashamed of myself.
For years I have avoided taking my son places in public. I have done so on many occasions. I never knew if he would be having a "good" day or a "bad" day, or when one would become the other. Would he start screeching and yelling because someone bumped into the cart at the store? Or would it be an item out of stock? It embarrassed me and caused me to make quick exits on a lot of occasions.
I don't want to make it seem like a constant issue, but rather an unpredictable one that I couldn't figure out how to handle. Charlie responds so well to really simple behavior correction techniques that this should have been an indicator of an issue. He is genuinely a good person and everything else in life just takes small nudges the right direction. But these meltdowns could swing in from left field and be triggered by trivialities.
As time went on I avoided certain situations I knew would be filled with triggers. This has been obviously wrong to me, because I felt guilty making those decisions. I feel guilty admitting to them now. Hopefully publicly discussing my sins will help me continue working towards absolution for my transgressions. Hopefully being open about this will make some parent somewhere know that they aren’t alone in this shame, that it is part of the situation we find ourselves in, and that the best path out of our poor behavior is to confront our bullshit head-on.
The power of knowledge is shocking. I have been reading so much literature about family's with an ASD member. I understand that my little hero has no control over these moments right now. The experience within him is too large and his training and skills at coping too undeveloped. I know they are more painful and harmful to him than anyone. Talking to him, I know he would be the first one to wish to prevent and stop them. I shouldn't be embarrassed about his neurological avalanches, I should only be embarrassed for my own cowardice. And I know now that the public opinion of strangers is a shitty reason to avoid going out with my family and experiencing life.
Hell, I don’t even like most strangers. Or non-strangers. And I want my son to feel loved and supported in those moments control has left him. I want that WAY more than I want to preserve ego in front of strangers.
I wish I could say that there was an immediate and total change in my behavior, but bad habits are bastards. It's a process, but slowly I am unlearning these old patterns and putting down new ones.