Saturday, March 27, 2010

Maybe it's not paranoia

A lot has been written about this post by Smockity in the Aut-rent blogosphere. It would probably be best if you followed the link to the cached version and read it for yourself. Here's my take on what was written, both in the original post and through many of the comments that came later.

A grandmother was in a library with a child who seemed almost certainly autistic. The child was waiting for computer time and could not do so quietly and patiently. The grandmother seemed uncomfortable with this situation but did nothing to stop the child's talking and asking the current computer users (the bloggers children) if they were done. This story was portrayed with great disgust for the child and the grandmother. They were incompetent and rude and not civil at all. No words of help or encouragement were offered, just silence and a seething snarkiness that was fully explained in the post. The first 22 comments (and many more later on) were all on the order of "Yeah, what jerks, and you are the greatest for not saying anything to them, but we've all been there and despise those types of people." At comment 23 someone suggested that the kid seemed autistic. There was not a lot of compassion shown at that point, but quite a bit of defensiveness.

Reading the post and all the comments made me feel awful. I have been that hapless caretaker and I have felt those unspoken words of contempt.

Guess how long it's been since msk has gone to our public library? Close to a year, but our last visit is still very clear in my mind. We were waiting in line to talk to the librarian about the summer reading program and it was too much for him - lots of echolalic speech and running around the library and frustration that would have been screaming, if not a full-blown meltdown, if I had tried to get him to quietly wait. Eventually we made it to the librarian to be met with distrust. Why, if he had really read the books we recorded, couldn't he answer questions about the books? Looks from around the library, but especially from the librarian made me feel totally un-welcome. That was it for me and msk at that library.

Since then I've rationalized about it: We have plenty of books at home for msk to read. Who needs a stupid T-shirt anyway? Who am I trying to impress with the idea that my very significantly autistic child can read quite well? The hours of this library are always shrinking and computer use by teens seems to be the only usage on the rise.

So no, we don't go there anymore. I used to give donations to the library foundation - that doesn't happen anymore. Sometimes I wonder if I imagined the bad feeling coming from others in the library towards msk and me and my parenting. Smockity's blog post helped me understand that vast numbers of parents are judging us where ever we go. Thanks ever so much.

I know that practice and exposure are what msk needs to be successful in social situations. I know that the world needs to see more of msk and kids like him to gain an understanding of autism. Sadly I can't turn off my discomfort when people shake their heads at us or stare. And msk can't stop picking up on my discomfort and becoming more and more wound up in these situations.

There are a very few outings we do regularly - weekly grocery shopping, the post ice hockey Farm Store stop, in nice weather the playground - and lately I've been trying to take him for quick errands to pick up a pizza or run for milk to the 7-11. If I can keep it low key and ignore the odd look at his rather loud echolalic speech, these go well enough. I feel like we need to do more. Given my gained insight into what people our thinking about us, I'm not sure the gain outweighs the stress.

Sorry that this post is so negative. I just can't summon the energy to put a postive spin on this. Sure, there are supportive people out there, but at this point the negative vibes are just too overwhelming.

For a listing of other aut-rent's take on this post you can go here or here.

16 comments:

  1. I read her blog post, and was cringing the whole time. I was quite peeved at her 'holier than thou' attitude, and especially the other moms who were rallying behind her in response. And to top it off, she was reading her Bible?

    I'm glad you wrote your post. Other people need to understand our point of view. We don't have spoiled kids, and we're not bad parents.

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  2. On behalf of librarians everywhere, I'm so sorry that that the library--and the librarian--was so unwelcoming to you and your child. I've always felt like libraries should be a haven for everyone, including and especially people with special needs. As a children's librarian, it broke my heart to read of the distrust and negativity shown to you and your child in connection with the *summer reading program* of all things. That's not the way it's supposed to be. It's the antithesis of what libraries are for.

    I know the last thing you probably need is more advocacy work to do, but I would strongly encourage you to copy and paste this post, maybe minus the part about Smockity, and mail it to the director and/or the board of your local library. They need to know that they're not serving their community. They are not doing what libraries are do. They are failing in their mission. It might lead to some changes on their part. Apologies if you're already done this, or just don't feel up to it, but if you do, you'd be doing a great service.

    Sorry about the rant. I know that particular incident was only part of what you were writing about here, and this stuff probably happens to you all the time. I just wanted you to know that not all librarians are like that, I guess.

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  3. Also, maybe they'd apologize to you! They should. They really should.

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  4. Ditto what elsewhere said.

    I do think you have to pick your battles and fight them where and when you feel comfortable.

    Sometimes all it takes is a gentle and simple request for consideration, letting people know what the situation is. Just letting folks know--when appropriate and necessary--that "kids with autism, like mine, sometimes have trouble with XYZ."

    When possible and appropriate, adding "we'll try not to disturb you" or "let us know if we're disturbing you" also tells folks you're aware that some autistic behaviors can be disturbing, and that if they'll give a little, you will, too.

    If Smockityfrocks had provided any kind of friendly opening--a la, "my daughter just started using this computer, she'll be done in XXX minutes" instead of sitting there fuming and judging, grandma might have felt comfortable 'splaining what was going on, and Smockity might have learned something, her daughter might have learned something, and grandma might have thought.

    Or, alternately, grandma might have been a bitch, and at least Smockity would have been confirmed in her belief that the woman was rude, in which case her post would have been justified and she wouldn't have had to put up with commentary from all us autism-harridans. ;-)

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  5. Saw your twitter comment...

    I've encountered "that type" before. Also, I think even if the child wasn't autistic that waiting patiently for her turn is awesome behavior. How dare she not stand perfectly still and silent? The nerve of having a private conversation with her Grandma, reinforcing those values. By the way she was acting you'd think she was a little girl. Oh wait she was. BTW, if this woman is so prefect what is she doing listening in on other parents or grandparents private conversation with their own children? Seems a little rude in my eyes.

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  6. Hi,
    Wanted to let you know that you are not alone and that we are all here for you and you bet we understand. I don't know if you have done this yet, butif you are on twitter friend me I am @aspergers2mom.

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  7. Hi, I came over via Shannon's tweet. I read her blog post too, and I share so much of your anger and sadness. But I want to believe that her attitude, her mockery, her absolutely un-charitable behavior is NOT the norm. To make fun at the expense of a child--any child--is wrong on so many levels. And that kind of blogging, the kind that builds the writer up at the expense of others... Well, really, what's the point?

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  8. I also came over via Shannon's tweet. My son, Conor, is 7 and 1/2 years old and I have never taken him to the library. There are just certain places that I've mentally checked off the "safe" list.

    Unfortunately, I think that we have all had experiences like your library experience. Our first one, the one that sticks out, was at Friendly's. Wasn't the last.

    I'm on both of your linked lists, so I've said my peace about it. I just hope that this brings awareness that kids don't fit into a "good" or "bad category (ALL kids).

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  9. It sucks that these bad experiences stick with us like this. And it sucks that people like Smockity can't or won't step up with some human understanding once they've been made aware. I'm sorry about that library crap, but as elsewhere said, I think and hope it was a one-off situation. Usually, I do go around with a certain feeling of defiance, a sort of echo of Shannon's blog tag, "We're here, we're weird, get used to it or bugger off." And I don't intend for Smockity and her ilk--and I agree with Kyra in the hope that they are a minority--to change that attitude.

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  10. Shannon, who is my friend in real life, sent me over. Now I'm following your blog, and Michelle's also.

    I'd like to live in a world where all are welcomed, not just the perfectly-behaved.

    One of the take-away lessons for me from l'affaire Smockity is to check my own defensiveness. When do I wound by responding in that manner?

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  11. We used to go to the library every Sat morning. Matt is almost 14 now and I might try this again next week with spring break as it would be a good time with lots of kids there.

    He would line up all the videos and stack them on tables and also pull out the receipt tape from the register. The checkout lady got to know us very well.

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  12. Hello, This whole situation made me cringe, feel sick to my stomach and made me want to quick run and open my school library especially for MSK. Actually, I would! Will! We have lots o f books. We are very friendly to all kids!I lend to the community as well as the school kids!

    I was at a restaurant one time where there was a ten-ish boy who may have had autism. The boy was quite loud and wound up but the Mom explained to all of us and we all helped, joined in, and felt enlightened and more understanding.We all hada great dinner. I suppose you get tired of explaining and people should be more aware but when possible, teach us.

    Thanks for all you do to raise awareness and compassion.

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  13. Thank you all for your support. It really means a lot to me. Through my life I have learned to speak up for myself, but being in public with my son is different. I feel uncomfortable about "outing" him when he is not making a choice about what personal information he wants to share. I know we need to be out and about more often so that's what we'll do. It's hard sometimes, but I'll keep your kind words in mind.

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  14. Hey my dear,

    I'm leaving this comment on all the blogs I linked to and which haven't yet cited it: SmockityFrocks issued a sincere apology today.

    http://www.smockityfrocks.com/2010/03/an-apology.html

    -Shannon

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  15. Not everyone thinks the way Smockity Connie thinks. Parents worth their salt want you to do what's best for your child, even if it --gasp-- inconveniences us.

    I suspect that not judging is a learned behavior. It's something I as a parent of NT children try to practice, and something I try to teach my children. Give us a chance!

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  16. Oh - it's hard. What kids with autism need is MORE opportunity to go out and be out. They need more opportunities to adjust and learn the nuances and the coping skills. They don't need less. And most certainly, the community at large does not need less exposure. We need more! More understanding, compassion, and opportunities to help. It makes me sad to live in a community where I see so little interaction between people with and without disabilities because it doesn't help build inclusive communities.
    http://eliselorraine.com

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