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I'm the BlogHer Contributing Editor on parenting children with special needs, and I'm at your service.  I am more than a parent, but with three...
 
 
 
 

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The Agents of L.U.S.T.

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Or, how our friends and family have my autistic son's back.

L.U.S.T. is The League of Unrepentant Straw Thieves. It is a grassroots, volunteer-only organization dedicated to a single mission:

Swiping drinking straws to support my son’s straw habit.

My son is obsessed with straws, and not in a tiny way. If we let him, he would chew on and fiddle with a straw, all day long, every day. In bed. In the pool. In the bath. On the trampoline. On the toilet. It’s a challenge, but, in some ways, it’s also an opportunity.

Our friends and family constantly search for ways to support and interact with Leo. It’s not always easy – that is, unless they're bearing straws. Then they get giggles, squeals, maybe even a bear hug. Who wouldn’t want to elicit such enthusiasm from an occasionally inscrutable boy? And who wouldn’t want to join an organization with such a saucy acronym?

The agents of L.U.S.T. are dedicated, and sneaky. They keep Leo well-supplied with contraband. They are experts at slipping out of restaurants with a fully paid bill (and generous tip) to distract from the extra straws in their pockets.

L.U.S.T. agents have no problem hopping into the car with me and Leo – even on a
Thanksgiving evening – and cruising the Starbucks stall in a local grocery store for a few pieces of The Good Stuff, because they know that those straws might make the difference between a successful and an explosive dinner.

They check with Leo regarding prime targets, as my son has regional beverage-purveying establishments’ straws mapped out by color and quality. Peet’s Coffee? Blue straws, those are good. Burger King? Red, very pleasing. Starbucks? Green straws, superior. Costco? Clear straws, mediocre, will do in a pinch. Tapioca Express? The Mt. Olympus of quarter-inch-wide boba straws. Woe to the uninitiated Leo companion who thinks they can bypass a drinks merchant without being pressed into pilfering!

Straws aren’t a new thing. Leo’s been craving them for more than two years. Why does he want straws? They are a stim, a sensory component of his autism. They give him something to do, as he finds self-direction difficult. They help him self-regulate. They're part of who he is.

Amanda Baggs, a person with autism, made a video called In My Language to communicate what stims mean to her. I think Leo shares some of her feelings.

Stimming with straws is important to Leo, and it must be gone about properly. Straws must be molded very specifically, chewed in an L-shape that can be flicked at the corner of his vision, or spun around in his mouth. Straws that are too flimsy or rigid are discarded, much to the dismay of inexperienced L.U.S.T. recruits.

Straw

But when the straws are good, there is instant happiness, followed by a few moments of bliss as he breaks in his new straw. His equilibrium is restored, and he can attend to an activity or transition to a new one, or even play independently.

Straws also stimulate some really fine language: “New straw! New GREEN straw! I want a new straw! Mommy, I want a new straw PLEASE! Mommy! MOMMY!” This is Leo's own language, this fluent requesting. Straws get him to use that sweet, underused voice.

But straws aren’t always beneficial. Occasional straws calm him down, but too many in too short a time period can lead to hyper-arousal. His jonesing gets in the way of his ability to function; he’ll go on a straw jag and need a “new one!” every few minutes, to the exclusion of all other activities, and with serious and aggressive tantrumming if his demands are not met.

Supervisor M, who has overseen Leo’s behavioral program for almost six years, has worked very hard to support his love of straws while not letting it interfere with his ability to function. She is not trying to extinguish his straw use, but rather incorporate it, predictably, into his day. She has made visual icons for straws, and they are part of his visual schedules at home and at school.

Leo's Portable Visual Schedule

In the classroom, where he enjoys a rich and predictable routine, he is down to two straws

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mr blueboy 5 pts

Shannon,

 I knew you went through a lot of straws but I had no idea you were this well organized in replenishing them. Next time we're down, expect a pick-up load.

 Uncle BJ.

Shannon Des Roches Rosa 5 pts

Is there a national stimming day? Your comments make me think it wouldn't be a bad thing, or a poorly-participated-in thing. I particularly love Aspie Perspective's remarks (linked at end of post) outlining how almost *everyone* stims if they're really stressed. 

@mashadutoit thank you for the book recommendation, and especially for not recommending that damn Curious Case of the Dog in the Night Time book -- good writing, good story, total *&5#!! nightmare scenario for parents of kids on the spectrum. 

Shannon Des Roches Rosa
Squidalicious.com ( http://www.squidalicious.com ) parenting first, autism second

CanISitWithYou.org ( http://www.canisitwithyou.org )
real tales of schoolyard terror and triumph

mashadutoit 5 pts

I loved this post. You let me have a look into your world without making a big deal of it. 

This reminded me of a book by Elizabeth Moon, called "the speed of dark".

I really wonder what you would make of it.  Its a fiction book, written from the point of a young man with autism.  I dont know how acurate it is, but it made me understand a lot more about autism.

In the story, a procedure is developed which is said to cure autism, even in adults.  So one of the central questions that the protagonist has to face is the dilemma of whether autism is a disease, or just a different way of being, and by taking a "cure", he is ultimately betraying himself.  

I really enjoyed the book - and I wonder what someone with more experience of this world would make of it. 

Just looking quickly,  Some reviews ( http://www.amazon.com/review/R2PPT4H0P2FXDF/ref=cm... )

annethomas 5 pts

If only he would chew on the straws not want me to hook them together, he chews on the neck of his shirts. My son also like Mardi Gras beads or really any beads, the really long strand that go on a christmas tree. I buy beads in bulk from a party store. When he gets them tangled... thank god I have patience.

AmberS 5 pts

As a chewer myself, I totally understand this. I go through pens at an alarming rate.

I love that you have agents on missions to get the good straws. And I love the acronym!

~ Amber

www.strocel.com ( http://www.strocel.com )

TW 6 pts

Stimming. Boy child is a pen chewer. And well an everything chewer. We actually discussed chew tubes yesterday at Staples but now I am wondering if a straw would work. Hmmm.

~TW ( http://ramblewoman.blogspot.com )
Retro-Food ( http://retro-food.com/ )

( http://ramblewoman.blogspot.com )

I Have Things 5 pts

It's me, TC. (I have too many freaking IDs...can't keep 'em all straight!)

I didn't realize, when you asked for posts about stims, what you were asking about. FWIW, guess what's on the list of N's accommodations in the classroom? Straws for him to chew on! He hasn't used them much this year, but they were a suggestion from his kindy teacher to keep him from chewing through a shirt a day, and it was continued in first grade to keep him from chewing through his shirts AND his pencils. (Sigh.) We seem to have turned a smallish corner in second grade; he never asked for them this year, and he doesn't splinter every pencil he's handed.

He will, however, chew though three or four packs of gum a day if you let him, so we've set a daily 'ration' of five sticks of sugar-free gum daily, to be chewed whenever he wants as long as he's not at school. In the beginning this resulted in his freaking out when the fifth piece of gum was gone in under an hour, but after months of not giving in, he's learned either to stetch it out, or just enjoy 'em while they last. 

annethomas 5 pts

I just love this!! How funny!!! Thanks for today's smile.