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Guest Blogger: Jeff Stimpson, Father of Alex, 13 Years old Diagnosed With PDD-NOS

12/29/2011

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_Rippin'
Our apartment is as quiet as it can ever be with two boys living here when from over where Alex sits I hear the soft sound of ripping. “Alex cut it out!”  

Alex, who is 13 and PDD-NOS, picks a few threads at the hem, pulling them off and letting them flutter through his fingers. Soon he turns the threads into thin strips that curl at their width into ropes of purple, orange, yellow, black. Gone then are shirts from Old Navy, past activities, camps. Some of these shirts he loved. It didn’t matter.  

Alex has also been ripping Ned’s T shirts, which has done wonders for filling up our bag of kitchen rags but Ned is pissed. “Oh my God, Alex, stop that! He’s ripping every T shirt I have!” We’ve hidden Ned’s shirts from the Intrepid museum and his summer camp. Maybe that will help this wave of destruction fueled by autism.  

“I have no idea why he’s doing this,” says Alex’s teacher, who does add that she thinks it might have something to do with the sensation Alex gets through his fingertips at the ripping cloth. It is kind of a cool feeling, but he winds up looking at worst like a castaway, at best like an Oklahoma Sooners linebacker. 

Jill goes online to a local autism group. “Anyone familiar with this behavior?” she wrote. “Alex (almost 13) has begun ripping T shirts. He usually starts at the bottom. It used to be if a T shirt was a little old or had a hole or loose thread he'd start there, but now it’s been newer T shirts. Is this a sensory thing? Related to puberty?”  

Replies one group member: “It’s an OCD/anxiety situation. He should be seen by a nuero-developmental pediatrician. My son’s similar behaviors were greatly reduced by Klonopin, an anti-anxiety treatment. Another approach that might work and has no failure cost is to go to a thrift store and buy a huge stack of T shirts for a few bucks. Tell him it’s okay to tear those shirts all he wants. At least it will stop confrontations and has a good shot at burning out this particular OCD. After he’s had it for a few days, interrupt him doing something else he likes and insist it is time to tear T-shirts.”  

The thrift shop idea I jump on, paying a couple bucks apiece for a bright green NYC tourism shirt, a faded old blue job that says CAPE COD, and a tie-dyed T. Only the tie-dyed has so far begun its trip to the rag bag. Then his teacher sends me: “Today I sat down with Alex and we wrote a social story about not ripping his T shirts. It seemed to have somewhat of a positive effect to the behavior. Every time Alex tried to rip or play with his shirt, I would say, ‘Alex, hands down.’ If that did not work, we read his social story together and had him show me hands down at his side or on his lap. I made two copies of the social story, one for school and one for you to keep at home …”  

Seems like a cheap failure cost, but if ripping holds to much of his behavior borne of autism, we’ll just get Alex’s hands down when he’ll be on to something else.


Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such asAutism-Asperger’s Digest, Autism Spectrum News, the Lostandtired blog, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”
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Guest Blogger: Jeff Stimpson, Father of Alex, 13 Years old Diagnosed With PDD-NOS

11/15/2011

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__Paranormal

I sit down at Alex’s tri-annual IEP meeting expecting it will last about 15 minutes. I almost didn’t come at all, thinking I’d just send the letter from his doctor saying Alex didn’t need a nurse in the classroom.

That’s odd: When did we request that? And if we did request it, how come he hasn’t had a nurse in his classroom for all the years he’s been in New York’s public schools?  

This question doesn’t really get answered as I squeeze into the miniscule seats with Alex’s teacher and OT, his PT and speech therapist, and a nice guy from the DOE who seems to run the show. We talk about Alex, who is 13 and diagnosed with PDD-NOS.  

First, we go over familiar territory on Alex’s IEP. His progression on language, his ability to do simple addition. He delivers the newspapers to classrooms every morning with a staffer, a vocational training will they hope Alex will continue using fewer and fewer prompts in the months ahead. “But sometimes he doesn’t understand that he has to deliver the paper and leave the classroom,” his teacher reports. “He wants to say hi to everyone and examine everything in the class…” He’s also bolted from his occupational therapist and tried to make for the school playground.   

“We’ve been discussing,” says his unit teacher, “that Alex could benefit from a one-to-one para. I think with hormones and puberty and everything going on, it’s becoming a little too much for him to focus.”  

My kid will truly, really, never – as the shriveling budgets and the fiscal years pass one by one – ever live independently. (As they said back in the NICU when he was born, I just don’t want you to think you’ve ever going to have a normal baby.)  

I bring my own suitcase of Alex stuff, too. Can they help him understand that he shouldn’t leave our apartment and bust in on neighbors? Stop biting his arm when frustrated, stop unraveling and ripping his own T shirts? Can they help him understand the dangers of traffic? Can anyone?

  “I can’t have him run across the street when I have five kids back here on this corner,” his teacher says. She adds that sometimes Alex will also listen only to her, and not to the class paras and other staffers. Familiarity breeds authority with Alex.  

Disruptive? Disturbing? “I wouldn’t say ‘disruptive’ and I wouldn’t say ‘disturbing,’ either,” the unit teacher replies. She’s discussed the para idea with others, and believes Alex would benefit in focusing and transitions “just for one or two years. We don’t ever want him to become dependent on one person.”  

Including dad, I’m afraid I realize. They called to remind me of this appointment a couple of times. How come they never mentioned the para discussions?  

We move to Alex’s other potential vocational work, based on his interests: janitorial, laundry. He loves Laundromats. “He mopped the kitchen floor the other day,” I say, feeling kind of like a defendant. “Of course, we do have a Swiffer, and I think he just likes to press the button on the handle.”  

“We use erasable markers, and have him wipe up the marks,” his teacher says.  

“We don’t need to create extra spills in our house,” I say.  

“Well see, we have a class that goes out to do laundry every Thursday,” the unit teacher adds. “It isn’t Alex’s class, but if he had a one-to-one para, he could go with them.”  

They want it, they say he needs it, and for now all they have to do is write it on the IEP and the City of New York, for some reason I still don’t understand amid my growing cynicism, must come to up with the para. In another timeline, Alex might get booted from public school now. How much longer will that apparent right of mine continue? “You could write that Alex needs a ride on the space shuttle and the city has to produce it,” I said. “Put down that he needs a BMW, will you?” No sense abandoning humor yet.

Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, Fatherville.com, and The Autism Society news blog. He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”
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