A Risk I’m Willing to Take to Advocate for My Child

“Sometimes [people] have to make hard choices. Choices that might look wrong to others but you know are right in the long run.” —Sam Tarly, Game of Thrones S5E8, A quote about taking risks

For me, that choice is to share my story. 

MY story.

Someone recently said to me, “it has nothing to do with your daughter,” when she told me that she lost all respect for me as a friend because of my blog. Because she claimed that I wrote about her “family” to have a conversation about our autism journey.

Our. 

Autism. 

Journey. 

And that’s not okay to use other people to do that, she said.

But the more I think about it, the more I disagree. 

Not once have I made up a story that I have shared here. 

When I write about our journey, I use pieces and parts of my own life; Anyone who is in my life can appear in these stories. But I don’t ever write names or post pictures of other people. I don’t even hold grudges because it is more important for people to grow. 

I don’t talk about people badly or judge them in my work (well, very rarely anyway). 

A good writer lets readers make judgments. 

*I’m a trained writer with an MFA, not an asshole. 

So I shared a part of my life that made others uncomfortable. 

Made others hurt or upset. 

I didn’t realize that I was supposed to silence myself when other people do things like exclude our family, negate my child’s diagnoses, or say distasteful things about autism to me. 

The point of my blog is to see things from our perspective. 

To make an emotional connection that sparks that aha moment of awareness in people and how they impact our community. 

It’s like being stabbed with a knife but having to worry whether or not my pain offends someone. I’m not worried about making other people uncomfortable when our entire life has become uncomfortable. This is WHY I advocate. Because this is not okay. 

Some of the things I write about are inspiring while others are truly awful. 

The point in sharing the lesser is to show people our world. 

Because others can read it and go back to their lives but we can’t. 

This is our life. 

If I ever witnessed some of the awful things that happened in the stories that I shared, I wouldn’t have been a silent friend. 

When my blog offends people, it has everything to do with my daughter. 

When you are a writer, there will always be somebody pissed off about it because every writer brings their own life into their work. Every book, movie, and art are influenced by someone’s experiences. For me especially, writing memoir, this is evident. It amazes me though, how I have written about serious life events such as abuse but our autism stories are offensive. 

It amazes me that people will tell themselves lies to sleep better at night.

My blog is not a research journal or a diary. It is a collection of situations, stories, and anecdotes whose mission is to promote and engage awareness. 

Awareness about what? 

Think about how many friends you have within your regular circle who have disabilities. 

I don’t mean saying hello to people in public or holding the door for them when you run into them. I mean in your actual circle. Involved regularly in your life. 

People you have side by side engagements with on a regular basis. 

Do you? 

I have binged Game of Thrones this week and the overall message of the series shows us that humans waste time and effort fighting each other like savages instead of unifying to save the world. They show us this lesson over seven seasons as the characters are consumed by menial vengeance and false loyalties rather than joining forces against the white walkers who threaten their entire population. 

Here’s the thing about autism families, they unite together to change the world. Join us or get out of the way. 

I know I am doing the right thing by sharing my journey. By opening the conversation because other families need me to do it. Other families who have hit rock bottom as I once had. I do it for them. To help them dig themselves out of the hole.

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4 thoughts on “A Risk I’m Willing to Take to Advocate for My Child

  1. Oh wow, that’s tough. I’m sorry. I have had to think about what I write and who is reading it. When Declan was younger our families disappeared. They said Declan was “too hard” to watch and they didn’t know what to do to help – so they did nothing. We were an island. But I can never write about that because sometimes my parents read what I write. That is just a choice I made – I’m sensitive, they are SUPER sensitive. Once I wrote about the social isolation of autism parenting – this one https://www.autismfamilypower.com/the-social-isolation-of-autism-parenting-what-does-it-look-like/ Somehow the hostess of the party we were at was given the article and then she wanted to meet with me. So I did. If I had thought she was going to confront me when I wrote it I probably wouldn’t have. but look at the comments – other autism parents REALLY connected with that article. It is really tough, I feel for you. Sometimes when I write now I “Write like no one I know is reading” That helps me. And I agree – it was coming here to wordpress that I found a ton of other autism families that could relate to my story and I theirs. This is where I find the best kind of support. Hope it all works out – thinking of you!

    Liked by 2 people

    1. Thank you Robyn ❤️ Wow did she confront you in a bad way because this story is so relatable and doesn’t show anything bad…Idk I think people want us to stay in the corner.

      I have only ever had two people get offended by something I have written. The irony is that neither one had any relation to the stories which was odd. But then I wonder wow so if you connected deeply enough to get mad at a story, do you have bad intentions or something. I don’t know its so random.
      M

      Liked by 1 person

      1. She confronted me because she wanted to let me know that she knows about autism and that I could talk to her if I wanted to. I don’t know how she knows about autism – but it was a nice gesture I guess. (?) Because everything I wrote was what happened and I didn’t say anything bad about anyone – just what I felt social isolation looks like even at a public event.

        That is weird. I have someone in my circle that is like that. Takes everything I say as if I am taking a shot at her and I am not talking about her at all. So weird!

        Liked by 1 person

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