After months of all being quiet on the advocacy front, there were three things in the last week and half where I got to both practice my advocacy voice AND see the fruits of using it.
1. My favorite of the three examples was Andrew’s IEP meeting. (IEP meetings are the annual Special Education meetings I have with the boys’ teachers and therapists to discuss the progress they’ve made and to hear what the goals are for the upcoming year.) Last year I left Andrew’s IEP meeting feeling bullied and broken. It was awful. But because of the work I put into his education last year, this year’s meeting was AMAZING. I sat at a table with teachers and therapists that work with and enjoy Andrew. They swapped funny stories about him, talked about the ways he’s grown this year and shared with me what they would like to see him do over the next school year. I am so, so, so grateful for this group. It was absolutely worth the work I had to put in to find them. Fruits of advocacy. Awesome. :)
2. The second one I don’t want to talk too much about…but I ended up using my advocacy voice at work when a coworker kept making a re-occuring joke that was making me more and more uncomfortable. It was TOTALLY awkward to say something. But it had to be done. Bleck.
3. And the third example is the one that I recorded in my book. April was Autism Awareness Month and Isaac’s school did a lot to celebrate. A lot of what they did, I really enjoyed. There was a performance from some of the classes that was absolutely adorable and there were different fundraisers and concerts. But, part of what they did for Autism Awareness Month was really hard for me.
The teachers and staff made lots and lots of Autism posters. Some of them had nice things to say like “People with Autism don’t live ordinary lives, they live extraordinary lives!” But some of them were so lighthearted that I found them bordering on insensitive, for example: “To stim or not to stim, that is the question.” “Stimming” is short for “self stimulating behaviors”…it refers to things like hand-flapping. And when my kids “stim” it’s really, really hard for me. I know what it is, I know why they do it, I know what to do to help…and still…it’s really, really hard. I’m not in a place right now where I can joke about stimming.
I felt really, really conflicted about saying anything. So, for a long time, I didn’t. I know that the people that made the posters a) love the autistic kids in their lives and b) made the posters as a gesture of support. But every time I saw them, they shook me up. I finally decided to write the principal an email just to say “these are hard” not “take them down!” or “how dare you!” I thought that since they were working so hard on supporting families with autistic kids, they might *want* to know if some of their gestures of support are misfiring.
And I was right. At least, based on the principal’s response, I think I was right. She was glad to hear from me. She affirmed that the staff is extremely committed to these kids and meant no harm. And she invited me to help plan next year’s Autism Awareness Month. Brave principal! :)
The posters came down and I felt weird and shy with the staff at first. I hate thinking I hurt them (the principal talked to the staff about my email without mentioning that it was me…but I have a hunch they know it was me)…and I felt like they were extra guarded with me. The awkward feeling has since melted away for the most part. I feel apprehensive about helping with next year’s celebrations (worried about pushing myself into something), but also sort of excited about what might come.
So, for the next 10 months, I have time to consider: What would make a good Autism Awareness Month? What would be supportive to parents and caregivers of autistic kids? Honestly, I’m just not sure yet, but it’s definitely something I want to think a lot about.
Here are the pages that I recorded in my book:
I printed out the email exchange between me and Isaac’s principal and tucked it here.
And I drafted some early ideas on what might be supportive posters.
And that’s the update. :) What else will this year bring?