Advocacy Update

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?


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About robyn

I stopped teaching Kindergarten in 2005 to become the mom of two crazy boys here in Brooklyn. At first I thought being a stay at home mom meant that I needed to pour all my time and energy directly into my sons, but I realized somewhere along the way that being a rockstar mom meant not only taking good care of my boys, but also taking good care of myself. And taking good care of myself means pursuing something creative...just about everyday. I started Made In Brooklyn to motivate myself in my creative goals as well as share my work with others and perhaps inspire them in their own creative journeys.
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9 Responses to Advocacy Update

  1. Rinda says:

    Robyn,
    You are such an inspiration! Thank you for sharing your stories. I’m working on some parenting issues myself now and I find it hard to go from denial/avoidance to action. But I’m working on it. Because we need to.
    Hugs,
    Rinda

    • Robyn says:

      Thanks Rinda. Denial is SUCH a tricky one! :) One I keep seeing popping up for me. What’s with that?! Best of luck finding your footing. You can do it!

  2. Plume says:

    Robyn, this post made me tear up. I can understand some of the things you are going through. I’m truly happy you’re doing things and standing up for you and your loved ones. It’s still something I’m working on myself. I agree, you are an inspiration!

  3. Amy says:

    Yes, you are very inspiring Robyn! Your boys are so lucky to have a gutsy Mama!

    • Robyn says:

      Funny, Amy. I read this again last night before I went to bed and thought “why did I make such a big deal out of this? It was only posters.” So to read your comment this morning and see “gutsy mama” I feel like: “wait. really?” :) Thanks, Amy. :)

  4. Cori says:

    you go girl!
    Kudos to you having the drive to call the school and correct the situation with the posters. I am not sure I could have. I am more inclined to quietly complain within myself which solves nothing…..I hope you don’t think me out of place but with autism if you have one child diagnosed is it common and more likely that your second child will be diagnosed too or is it the luck of the draw so to speak? Just curious on whether it is genetic or not….love hearing your stories and seeing your photos!

    • Robyn says:

      Thanks Cori. :)

      Good question…and one that can get hotly debated. Most people think that it is genetic. I think it is genetic. But I’ve met moms that fiercely believe that it is not and I want to be really mindful and open to where they are at because it is SUCH a loaded issue.

      Their doctor tells me that it is really common to occur among siblings…especially brothers since autism is more common in boys. BUT…that being said…in both programs that my boys are in, we are the only family with autistic siblings. Not only that, but when other mothers ask me if my other son is autistic and I say yes…they are BEYOND shocked. I usually end up having to comfort them. ;) Which tells me that maybe medically speaking its common….but in terms of what folks are seeing day to day in the autistic communities they are in…it’s not that common.

      Love the questions, though. no worries.

  5. Ruth says:

    Hey, Robyn, you are awesome! When things have been bad recently, I’ve thought, “Robyn understands, she’s been there” and I’m so happy that I have the opportunity to meet you soon ~ not that we should talk about our children all night!
    Thanks for mentioning stimming, I never knew hand flapping had a ‘proper’ name ~ I can see there is so much I’m going to learn in the weeks, months and years ahead.

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