Monday, November 1, 2010

Blogging for Autism: Siobhan Maggie Bartilucci in One Million Words or Less


We interrupt our usual Tales of the Easily Distracted pop culture & fiction to take part in today's Moms Blogging for Autism

Siobhan* Maggie Bartilucci in One Million Words or Less
                                     (*Pronounced “shuh-VON.”)
Our daughter Siobhan, who recently celebrated her 14th birthday, is a smart, upbeat young lady who loves her family, cartoons, playing, sweets, and swimming, more or less in that order. She happens to have been diagnosed with Asperger’s Syndrome, which causes her to behave in a more introverted way. By “introverted,” we don’t mean “shy.” (In fact, Siobhan often walks up to total strangers and asks them about themselves, which we discourage only because of the dreaded “stranger danger.”) In Siobhan’s case, “introverted” means that, for example, if she’s alone in an elevator she will, if not reminded, do the kind of things most people do when they’re all alone: she’ll talk to herself, dance around entertaining herself, etc.  Siobhan has also been diagnosed with ADHD, which means she does these things at great speed.  She’s very high-functioning and can be quite gregarious and charming, but she’ll close off quickly when her bank of conversation questions is depleted.

Siobhan is severely allergic to peanuts, tree nuts, and sesame, and must carry an Epi-Pen with her at all times. Luckily, she’s also a picky eater, so she always asks what things contain, and then doesn’t eat it anyway because it’s not pizza or a hot dog.  We try to encourage her to try new foods, but we don’t make a big thing of it because that way lies eating disorders, and nobody really wants to go on Dr. Phil.

Her avowed one true love is Sonic the Hedgehog, who she plans to marry as soon as she reaches legal age.  As long as he can provide for her in the style to which we’d like her to become accustomed, and the kids are raised Catholic, we’ve chosen not to keep them apart.
Siobhan’s musical tastes tend more to trance, including the work of Cascada and Paul van Dyk, with a good bit of Webb Wilder and the theme songs from the Japanese Sentai shows, the ones they use to make Power Rangers.  We’re all cartoon fans in our house, so her TV watching tends more towards animated fare from various decades. 

She can and does sit through entire films and TV shows, but left to her own devices (said devices being the remote) will tend to pop about to her favorite scenes, re-running them endlessly, wearing a hole in the DVD and then who’s going to buy a new copy I ask you not me missy.

She has made the jump in the past year from random non-sequiturs spouted at inopportune moments to the correctly chosen cultural reference.  She’s slowly finding the way to make her eccentric affectations work to her benefit, and we enjoy watching it happen.

Siobhan is well aware of what rules are, and that they apply to her, but she sees no need not to try to get around them when not under scrutiny.  She comes from this honestly, being her father’s child.  While she’s sweet, she's not made of sugar, and can withstand reasonable discipline. Luckily, she’s basically a good kid, and far more affectionate and empathetic than most Aspies we've met. In addition, we've had a reward system in place since her kindergarten days, encouraging her to be on her best behavior. If she behaves well (e.g., getting homework and chores done, being respectful, all that good stuff), she gets a smiley-face drawn on her calendar for that day.  If she gets only three frowny-faces or less in the entire month, she gets to choose an end-of-the-month prize costing $20 or less as a reward. We’re happy to say this reward system works wonders with Siobhan; in fact, we can’t remember offhand when she last got a frowny-face! :-)

17 comments:

  1. That's great! Oh, and my son loves pizza, too. Cheese pizza is his favorite.

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  2. Thanks for your nice comments! Pizza is the great equalizer! :-) (I can't eat gluten, so one of my goals is to learn to make GF pizza as good as the kind at Siobhan's favorite local pizzeria. Here's hoping!)

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  3. I like knowing that, if on her own, Siobhan will talk to herself, dance about, etc. I'm not quite as light-footed as I used to be, but I've been known to occasionally trip the Light Fantastic while in an elevator or two.

    (Reminds me of a story on how someone once encountered the late, great Victor Borge while on a walk. "Spring in the air," the man observed, wherein Mr. Borge promptly leaped up.)

    Makes me wonder if I have a touch or two of Asperger's.

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  4. Thanks, supergee! By the way, I enjoyed the link to your Live Journal site, too! :-)

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  5. Michael, sometimes I think we're all Aspies under the skin. I loved your anecdote about Victor Borge, and thanks for your nice words about our dear Siobhan!

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  6. Great post! Yep, cheese pizza is Little Bird's favorite, too. You know, GFCF pizza :)

    I'm blogging today, too...
    http://www.imjustthatway.com/2010/11/bloggers-unite-for-autism.html

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  7. Thanks for the link to your blog! I'm looking forward to reading it. Also, I couldn't help smiling when you referred to your child as "Little Bird," as that also happens to be one of our family nicknames. My dear late mom used to call me "Little Bird," and it's one of Siobhan's nicknames, too! Small world, huh? :-)

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  8. Great post...We live on pizza too!

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  9. Thanks for your praise and for visiting us here at TotED, Kathleen! I'm beginning to think we Aspie moms should start a pizza franchise where our kids can feel at home, with both regular and gluten-free pizza! :-)

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  10. Visiting from the blogging for autism bloghop. I laughed when I saw your explanation of the pronounication of Siobhan. I am Irish and knew how to pronouce it so it tickled me:) We love pizza too. Lovely to meet you. Jen

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  11. Jen, it's lovely to meet you, too! We pizza-loving Irish-Americans with kids in the autism spectrum must stick together! :-) I've seen the name "Siobhan" spelled (and pronounced) in at least a dozen different ways. I find if I don't put in the explanation of how to pronounce "Siobhan," people say it as "sy-bo-han." It's so gratifying to see more people spelling "Siobhan" the correct Irish way; bit by bit, "Siobhans" and the people who love them are winning! :-) Thanks for dropping in here at TotED, and please feel free to come around any time!

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  12. Dorian, your wit and eloquence in describing your dear daughter is wonderful! She seems to have many many things in common with my O-bug. Unfortunately the desire to circumvent rules to obtain her goal, even while under scrutiny has always been difficult here. Feel free to stop by my blog and pursue topics of interest as you like through the word cloud. I'm glad Fernan "introduced" us.
    My blog is Life's Twisted Stitches @ http://www.lifestwistedstitches.com

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  13. Mel, it was so nice to meet you via Fernan! Thanks for your kind words about our blog about Siobhan, actually a joint effort by both my husband Vinnie and me, or Team Bartilucci, as our family is known. :-) Although I usually blog more often about classic movies and Vinnie blogs about comic books and whatever else strikes his fancy, we also have family members and close friends who live with bipolarity and/or ADHD and Asperger's Syndrome. So you see, we can certainly relate to the issues you're grappling with. We look forward to visiting LIFE'S TWISTED STITCHES again soon, Mel, and good luck with O-bug. We parents are all in this together, after all!

    In case you're interested in our other blogs, just for fun, here are the links below! (If they're not your cup of tea, that's OK, too! :-))


    1.) My classic movie blog, TALES OF THE EASILY DISTRACTED:

    http://doriantb.blogspot.com/


    2.) Vinnie's blog about comic books and other fun pop culture stuff, THE 40-YEAR-OLD FANBOY:

    http://40yearoldfanboy.blogspot.com/


    3.) IS THAT REALLY DESIRABLE?, a blog about things and situations that basically have us scratching our head in bewilderment and amusement! :-)

    http://itrd.blogspot.com/2012/02/we-cant-all-be-center-of-universe.html

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  14. She sounds like a joy and a writer's inspiration.

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    1. Eve, thanks for your kind words about our pride and joy, Siobhan (she'll be 16 in October, by the way)! And yes, she absolutely is a joy and an inspiration! She's also been enjoying cobbling together her favorite stories to create new ones. We're thrilled; after all, that's how we writers get started! :-)

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  15. Hey, gang, Dor here: Just wanted to let you all know Siobhan is now 16 and doing wonderfully at school (all A-pluses and B-pluses), and getting along with kids at school and loved ones (who are growing up, too :-)), not to put the whammy on it! :-D

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