Yesterday, Jess asked if she could send me a letter she wrote for me, because she wanted to post it publicly, but not without my permission. I asked if it was going to make me cry. She said it wasn’t overly mushy, but no promises. My version of mushy is different from most people’s version of mushy.
There are so many times I wind up face-down in a pillow, screaming in frustration, and feeling near defeat. A couple of days ago, Facebook reminded me of a post I made in 2013… I was ready to be finished entirely with speaking up for my peers, due to a parent bully.
Thisdamnedclose to throwing in the towel on the autism activist stuff. It’s no wonder Autism Speaks gets a bigger voice… they’re neurotypical and don’t risk a shutdown when faced with this bulls–t. I feel like such a failure sometimes. This is one of them.
My friends insisted I’m not a failure. My mom reminded me I do this because it’s something bigger than myself and it matters more than temporary feelings I may have due to the words of others. I accepted that keeping autistic kids from having to jump through seemingly endless hoops I had to, both at their age and as an adult, is worth the effort.
As I read this wonderful letter, curled up on my couch with a cat next to me (as is my normal internetting position), I laughed a couple of times and then the tears hit me… and those turned to sobs. And then laughing sobs, because that’s just how I roll. Part of my response to Jess:
There really aren’t words to express how grateful I am to you. Not just for this, but for everything you do. We’re a team. Everyone fighting for these kids… we do this together. I need you and the parents like you just as much as you need me and those like me. We need each other. The kids need us.
My mom came in and I asked if she wanted to read it. She told me to read it to her, but I didn’t think I could through the tears. I did anyway. Her response? “I told you.”
There is a tongue-in-cheek idiomatic term for people who regularly express support and esteem for one another, occasionally to the point of pretentiousness: mutual admiration society. When parents complain to me elsewhere about a lack of decent parenting blogs in the autism community, I immediately forward them to Diary of a Mom. I frequently comment on Diary of a Mom’s Facebook posts, with my two cents. She tends to defer to my comments with some variation of, “What she said.”
Rather than dwell on admiration, which does seem somewhat self-serving, I think we are more in the realm of appreciation. I know that if I ever got out of line toward a parent, Jess would pull me aside and tell me. Just as she knows I would do the same for her. Jess makes me appreciate the parents who do get it and do listen. Seeing her readers take in what she says makes me elated. It’s great to see the comments of those who agree with her, but it’s even better to see the ones who put themselves in check; the parents who say what she’s written has made them think and reconsider their words/actions. And even better than that… the occasional comment from a parent who says they’ve never commented, but they are reading and taking in everything said by Jess and the autistic adults who comment on the page. Those comments are the ones which make me truly appreciate what Jess does and to further appreciate my fellow autistic advocates… my tribe.
Parents, please understand that while it may seem like autistic advocates are not on your side, we are on your kids’ side. Personally speaking, I have their back, no matter what. And I know that, as a parent, you strive to have the same position. So, if you think at any given time we’re on opposing sides… please try to understand why an autistic advocate is taking that particular position. Ask questions, listen to the responses, take the time to process those responses. We just want your kids to thrive and live a fulfilling life; whatever that may mean to them as individuals.
This letter is why I do this. Not for the thanks, not for the recognition, but because I hope parents are reading. I don’t need feedback or validation… I just want to hope they’re reading and processing. This proves they are and makes it all worth it. Thank you.
Read more on the importance of internet privacy: http://imapartygiraffe.com/choose-your-internet-words-wisely/ and here.