Phantom Menace

16 Aug

One of the things I promised when I started this blog was that it would be gritty, and contain the real life drama of being a teacher in a severe and profound classroom (in more ways than one) as well as being a parent. I’ve been very light on the parent bit. Too light.

So time for some gritty heaviness.

Yesterday, I introduced you to the idea of PANDAS and some of Thomas’ difficulties. For once, Jane is actually just as skeptical as me about this business. None of these conditions (PANDAS, autism, PDD-NOS, ADHD) have any sort of test a body can give. Every one is identified by some sort of shopping list of symptoms and behavioral characteristics. We are infinitely frustrated by this. It’s not like spina bifida or Down syndrome, where there is this definite physical marker or genetic thing. Autism and everything about it is like some sort of phantom whose outline you can just barely make out in the mist. You know its there. Or do you? We don’t know where it comes from, where it is or where it will be in the future. Something is there…or is it? What is it? Is it just bad behavior? Is my son just being a stubborn and obstinate shit that needs to be disciplined into submission?

His teacher called yesterday. Thomas is in regular 1st grade with support from a para. His teacher is actually pretty competent if not extremely empathetic. Her son, who is in 3rd grade, is identical in a lot of ways to Thomas, with the autism/PDD-NOS diagnosis. Her husband teacher MoID kids down the hall from me, so I there is a bit more of a connection than simply casual. Thomas is exhibiting a lot of wildness, immaturity, and generally disruptive behavior. Like at home, he requires constant, diligent supervision at all times. He’ll wander out of the room, get in the faces of other kids, hug the littlest ones around the neck, yell loudly, exhibit defiance…pretty much a uniform constellation of behavior problems.

Jane was the one who talked to the teacher, so she laid it all on me when I got home. And then she asked, “What should we do? Any suggestions?” I’m a behaviorist. This is supposed to be my thing. My area of expertise. However, before I can think like a behaviorist, I have to process as a father. And that is an energy and time consuming thing. We’re constantly having to adjust to new behaviors and new demands. I think any parent has to do this to some extent. There’s always some new thing on the horizon, some new developmental/emotional/behavioral issue. But it usually isn’t quite so bizarre and different. Like now Thomas want to smash and smush things. glue sticks, toothpaste, chapstick, crayons, bar soap…all smashed and crumbled. His impulsive behaviors are becoming more compulsive and not doing them can lead to tantrums and meltdowns.

It is a lot to take in and deal with.

One of the difficulties I’m having is wrapping my mind around the concept of compulsions. I get what a compulsive behavior is, but how to handle it as a behaviorist becomes tricky. From a cognitive perspective, compulsions are driven by a false or irrational belief that something bad may happen if a person does not engage in a certain behavior or set of behaviors. But this is unsatisfactory from a behavioral perspective. I can’t just assume anything regarding motivation. I’m going to have to noodle this out some more in order to determine function although it is looking a lot like automatic reinforcement. Thomas has a lot of marbles but he is very concrete in his thinking, so a cognitive approach will be challenging.

An instance of this is when his teacher was talking to another student. “I know you can do this! All you need to do is push yourself harder, and you can do a lot better!”

Thomas overheard this, and promptly went up behind the poor boy and gave him a hard push.

He was just trying to help!

At least I’m not contending with a lot of head banging and self-injurious behaviors. At least we have had an opportunity to mainstream, which I’m not sure is going to be able to be maintained. Right now he is fully included, with OT and speech therapy. We’re trying to hold on to as much of a regular environment as possible for him, but as he gets older and bigger (he already weighs over 70 pounds!) it will be more difficult especially if we see more aggression.

dick

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4 Responses to “Phantom Menace”

  1. liz August 16, 2006 at 4:23 pm #

    Oh, Dick. I’m sending you and Jane (and Thomas, if he’d accept them) big big hugs.

    I wonder if you have seen the just-published book, The Mislabeled Child, by Brock Eide MD and Fernette Eide MD. Like Mel Levine, they focus less on labels and more on functional strengths and weaknesses.

    They have a website here about the book,

    http://mislabeledchild.com/index.html

    with a chat board, here:

    http://mislabeledchild.com/phpBB/

    They have a daily blog too, with neurolearning snippets.

    http://eideneurolearningblog.blogspot.com/

    Today’ post:

    http://eideneurolearningblog.blogspot.com/2006/08/failure-to-wait-in-adhd-depends-more.html

    Failure to Wait in ADHD – Depends More on Presence of Reward

    Here’s an interesting finding – contrary to the idea that children and teens with attention deficit-hyperactivity disorder have impaired impulse inhibition (that is, they can’t check their impulses as easily as non-ADHD kids), researchers found that if the delay involved a strategic monetary reward (in game play), then they could inhibit response times just as well as controls.

    The paradigm here involves game play involving a monetary reward, but since this, if anything, is a more complex variation of the GO-NO GO task, there may be something to this. The motivational aspects of kids diagnosed with ADHD haven’t been explored very well, but this could explain some of the paradox of inattentive-hyperfocus behaviors.

    Wouldn’t it be crazy if we were using psychotropic medications to treat some children who just had strong motivation differences?

  2. m-j August 18, 2006 at 10:27 am #

    Dick,
    I am the mother of two boys with ASDs, one with “Asperger’s” and the other with Autism. I can relate to what you write! I am a special education teacher with a background working with children with ASDs and feel like I have no clue when it comes to my own kids!

    My kids are polar opposites when it comes to needs. My older son “seems” so normal (except when he is giving away personal info in the grocery store or having a tantrum when the music is too loud) and my younger son sounds very much like your seven-year-old. I have two more nephews with PDD and another with autism, all from my sisters. We are thinking there is a genetic component!

    I will be back to visit. Thanks for a good read!

  3. Dick Dalton August 18, 2006 at 1:34 pm #

    Well, you know how I feel about medicating these kids, Liz. I’m very skeptical, altho not totally opposed if it is found that the medication helps. But if and only if it is the medication and not some other intervention. But yas, ADD children who can’t wait for anything will often wait up to *an extra hour* to ride on the front car of a roller coaster. Doesn’t that sound screwed up? So yeah, motivation definitely plays a huge role.

    Thanks for stopping by, m-j! Um…WOW! Yeah, there probably is a genetic component with your family being so overloaded with this! My next post sort of backs that up when discussing my own problems with social skills. I don’t deny that parents contribute probably more than we want to admit genetically and behaviorally.

    dick

  4. L A August 21, 2006 at 7:00 pm #

    Hi,
    I’m glad to find your site/blog! My son, 8y-o, is diagnosed w/ADHD, has sensory integration issues, & other complications. I wonder has anyone tried hypnotherapy with their kids & if so, what was experienced & the outcome? Thanks.

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