Wednesday, 11 May 2011

  • They say he needs it


     

    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 minuscule 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.

    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.

     

Comments (7)

  • starcrossedloversdivine@xanga

    It sounds like he does need one. It's hard to handle a classroom full of other kids if you're constantly running after another child. If it would ensure his safety, I would suggest a one-to-one staff in the same situation. 

  • anonymous

    Interesting.  Many of us are fighting like hell to get a para and are denied.  I think you're in a pretty good situation. 

  • QueenofChaosInsanity

    Oh Momma.. I feel your cynicism & frustration. Had our IEP in March, then Monday morning, our teacher asks for us to "come in" for an impromptu meeting. I fretted over it, you know.. what now? So Tuesday before school, during this "impromptu" meeting - I realize it most certainly IS AN IEP "Addendum Meeting" - totally unexpected & unprepared.

    Long story short, decisions made by our under qualified Special EDU Director & out of touch w/reality, Superintendent: this school year has been a waste, children regressed (many, many issues) in ALL aspects of their progress. In February, we got another teacher & she has salvaged 'some' of the year, & now I find out.. not only have their "wants" changed again since March's IEP, they now want to put in in a new classroom, w/an impatient, rude, & bull headed teacher who frequently restrains these kiddos & is extremely "gruff" when around the kids. I fear another battle coming on.. they've already labeled me a "TROUBLEMAKER", in which I take GREAT HONOR in! 
    Loved your post! Keep them coming! Blessings!
    Kimberly Lowe aka The Queen of Chaos & Insanity Kingdom
  • mybodyx@xanga

    Since when is a one-on-one a bad thing? You should be extremely lucky that there is someone to help your child throughout the entire day. My little brother, who is SUPPOSED to have a on-on-one rarely gets his required services from her because his one-on-one's think they're classroom aides... so my brother starts acting up.


    I hate that puberty excuse. And it is an excuse, because all they're really telling you is that they dont know how to work properly with your kid.

  • jeffslife

    These are very thoughtful comments. I've come to realize that one-on-one is a good thing within the spectrum (ha ha) of parenting a child with autism. I do feel like it was sprung on me, though -- especially considering the hours and money I've donated to my son's school over the past two years. That "work properly" comment is arresting, too. I mean, I like to think they do know how to work with him or can learn more about that in the coming year, but...


    Thanks to you all for reading about and responding to this situation.

  • TifaRose@xanga

    My brother had a one-on-one para throughout school, all the way to the end of high school, and it benefited him. He is very independent and is holding down a job. Every person is different though, and his needs may be different from Alex's needs, but he didn't always have a para, he just tried it out and it was clear that it happened to help him. Maybe a trial period of trying it out would be a good idea.

  • jeffslife

    TifaR: Was it tough when he didn't have the para anymore?

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  • jeffslife
    • From: jeffslife
    • Name: Jeff Stimpson
    • Location: New York City, New York, United States
    • About Me: Writer and speaker on being the dad of a boy with autism. Author of "Alex: The Fathering of a Preemie" and "Alex the Boy: Episodes From a Family's Life With Autism." www.jeffslife.tripod.com/alextheboy
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