Sunday, October 14, 2012

Far and Wide

Last month, an old high school friend sent me a message on Facebook. Here is a slightly edited version, with names changed to protect privacy:

I've read your Facebook posts about your son and your autism activism. I've been a middle and high school math teacher for 17 years now and have certainly taught my share of kids all over the spectrum. This year I was pulled out of important professional development for a 2 hour autism training/parent conference because I would be teaching Rick, an autistic sophomore this year (all of his teachers were required to attend). My first reaction was to be annoyed, not because I was receiving training, but because I have already been through extensive training and had many years of experience. I got the feeling from emails leading up to the meeting that these were over-involved, entitled parents (we do have quite a few of them in the town where I teach). What kept my mind open was you.  
I have 2 kids of my own. They have certainly changed my perspective on teaching and communicating with families. However, your voice, as an advocate for kids like Rick and your son, resonated with me.  
I've approached teaching Rick more thoughtfully than I otherwise might have because of your voice in the back of my mind. 
So yesterday, Rick cursed at and threatened the life of 2 lunch ladies in the cafeteria, threw a chair and his lunch, and stormed out of the cafeteria. While the principal and I tried to convince the ladies not to press criminal charges, my heart went out to him, his parents as well as to you and your son.
Needless to say, I was moved. As the parent of a child who is only five but can be quite impulsive and aggressive, it is not hard for me to imagine my own child someday getting into serious trouble. And I am proud that my words affected someone enough to approach a difficult situation with thought and compassion.

But it also made me think a little bit harder about what I do as a parent and as a blogger.

My friend used the terms "advocate" and "activism." Although I advocate for my son's specific needs, I've never thought of myself as either an advocate or an activist for other autistic people. My blog was meant to do a few things: keep friends and family updated on my son's progress, serve as an emotional and therapeutic outlet, and be a conduit for connecting with other parents with special needs kids.

This last reason, connecting with other parents, as well as connecting with some autistic adults, has been the reason I continue to blog. Parents of special needs kids are busy people and the few in-person support groups I have found are not at times I can attend. So I found my tribe online. They are a generous, knowledgeable, and uproariously funny bunch. And it is wonderful to converse with folks who are right there with you, who, as we like to say "get it." Someone is always available to have a virtual drink and let you vent for a minute without judgement because they know you love your kid; it goes without saying.

But what about everyone else? Because when we blog, we tell our story to anyone who chooses to read it. I had no idea my high school friend read my blog, let alone that my words would stay with him for any length of time. With the exception of a few regulars (hi Mom!), I have no idea who any of my readers are. And so, whether I like it or not, I represent one tiny sliver of the autism community to whoever stumbles across my blog.

For me this means first, that my words really do matter. If I say "autism sucks" those words are not only hurtful to autistic people, but also reach people who might not know anything about autism beyond stereotypes and mass media portrayals. They may not stick around long enough to know that I also love my child with the ferocity of a mountain lion, or that I am using those words as a shortcut for "my child's sensory needs are making it really hard for us as a family to leave the house safely." You know that, but someone else may not. I'm not saying don't be completely honest. I'm not telling anyone to check their words to please anyone else. Speak your truth however you see fit, but remember that you don't always know who is listening.

Second, if we, as bloggers and parents, want to see a world that not only accepts but embraces a neuro-diverse culture, that does more than just accommodate disability, we need to do more to find an audience beyond ourselves. It is comfortable here, but we need to reach further. I don't know exactly how we do that. In part, I think it means we always have to share the good stories too, the smiles and achievements. We need to write with honesty and integrity. We need to be smart and tell compelling stories that also happen to involve someone with a special needs. But we need a bigger platform, and we need to make sure that adults with disabilities are on that platform.

Most of all, we need to keep writing.

Have thoughts on how bloggers who write about special needs can reach a bigger audience? Have a story about a time your story reached someone outside of the special needs community? Please share in the comments!

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Jen Bush writes about raising a five year old on the autism spectrum and a typical three year old on her personal blog, Anybody Want A Peanut? You can follow her on Facebook.


  1. I had a similar situation occur - a former high school classmate of mine read a post I had done on the reasons why kids stim. She was a teacher and passed it along to her principal. She later told me that my post served as a talking point for a discussion on addressing the sensory needs of the special needs students in their classes. I was thrilled that something I wrote had a trickle-down effect that might have helped a teacher understand why a student might need to fidget, move, or stim in order to learn effectively.

    I've actually found that several people I knew "pre-autism" have become some of my most loyal readers. Even though they don't have special needs children, I'm glad that I'm teaching them about autism and - perhaps - changing their attitudes towards people they might encounter in their every day lives.

  2. I love what the author wrote, but the high school friend needs a kick in the pants. Self indulged, over involved parents. Over involved!! Really? Parents are their children's advocates! I'll tell you who is self indulged - the high school friend who thinks they've had extensive training and too good to go to more training. Terrible example of a teacher!

    1. Ann, I thought that at first as well. But I think this is an accurate picture of how jaded teachers can become. We might not like it, but I'd imagine it is common. As a parent, I make assumptions about teachers and it is only natural that they will make assumptions about parents based on their experiences. The important thing for me is that he learned, thought twice, and responded accordingly.

    2. Jennifer, you are right. I do know teachers who have either taught for far too long and have become jaded or really think that they do know it all. We are fortunate that in our school district we have teachers that truly listen to us. I, personally, don't really care if some teacher thinks I'm over-involved. They don't have to live my life every second of every day. They only know what happens at school. They don't really see what happens in the real world. I hope for every teacher that thinks they've learned it all, that there are 50 teachers who are willing to listen and learn.