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29 October 2010

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Michelle Dawson

Basket holds have been fatal, in case anyone's interested. Examples from http://www.gao.gov/archive/1999/he99176.pdf :

"The use of basket holds was involved in the deaths of a 17-year-old girl in a Florida residential treatment center in November 1998 and a 9-year old boy, who died in March 1999 in North Carolina after being restrained in a basket hold following a period of seclusion."

There are papers in the ABA literature which promote the effectiveness of basket holds as a form of punishment (eg Hagopian et al., 1998; Fisher et al., 2005; there are more). These papers report very poor quality research and none mentions the dangers of basket holds.

emma

I don't know if this plays a role for Charlie, but my interpretation of Dimitri's struggle at transition is that he is a so much "in the moment" kind of person. Example, this morning as soon as we say time to go down stairs for the school bus, Dimitri went to choose a book and asked to sit down to read it, we struggled to get down stairs. But Dimitri enjoys school, (his teacher has told me how happy he is, I have no reason not to believe her). It's not that he dislikes school, maybe he can't picture himself being there? Maybe he does not trust our words?

As you also say, when there is difficulty at a time of transition it can very quickly become a habit, become reinforced. Transition = some degree of struggle/resistence. This is a continuing circle of events in our house which we find hard to keep to a minimum. This is not a helpful comment really is it?

As we seem to be in a phase of struggling at transition, I also see often times the best response is no response, or minimal at least, otherwise it can end up become a power struggle, and also a fun distraction (for Dimitri at least) from what we are supposed to be doing.

susan senator

Oh, wow, do I hear this. Kristina, sometimes I wish you lived closer because there are so many things Charlie and Nat have in common, there are so many insights you have that I wish I'd had sooner. Just don't forget about all of the lovely lessons Charlie learned from you and all of those who have loved him so much over the years.

KWombles

Kristina,

A thought-provoking post, as always.

We do the best we can with what we know at the time, and often, it's only looking back that we can see another path, different choices, perhaps would have been better (we don't really know, though, do we?).

Precautionary principles like you closed with are important guidelines; what could the long term ramifications be? How do we proceed in a way least likely to do harm but most likely to benefit the individual and the family?

Sarah

Amen, Sister!

farmwifetwo

As we've always said "be very careful what you teach Russell". He misses NOTHING, and he mimicks easily.

It took us until he assaulted his male T to finally stand up and kick them out. I am dealing with the organization (umbrella hosts ABA, etc for all disabled children) about a device for him at the moment. I was asked if I was still part of it and I said "No, and it ended badly". The very lack of reaction, the lack of "why don't you try it again", by these people tells us we're not the only ones.

ABA is teaching things in sequence. Learning a skill and building on it. ABA is the teaching of appropriate social/behaviour mechanisms in a social setting.

Every parent, Teacher etc does the first for every child, both boys have a program using Ont PPM 140 for the second. This is NOT, that 40hr/wk crap we subjected the youngest to. This is, step by step, realizing it takes time, role playing, social stories, token systems... and it works.

The itinerent PDD teacher had on little boys IEP for years, every day he'll type "Today is...." The first thing that it changed to this year is "Child will type one sentence/day of his choice". Do you have any idea how difficult that is after 4yrs of "Today is" has been drilled into his head. Could you just imagine how far delayed he'd be if ABA had gotten away with having him read or amuse himself instead of being part of the classroom back in K and Gr 2 (Gr 1 and 3 were not good fits) He certainly would not have been student of the day yesterday and reading "Russell the Sheep" to his classmates for his show and tell. The SLP from the ACD program just cringed when I told her what the PDD teacher did and couldn't get rid of....

I have always treated him as a child. We have rules, expectations etc at his developmental level, but they still exist. I currently have a child who as his Teacher told me a couple of days ago "We love him, we're not giving him back until we have to" (Gr 7). He's never assaulted anyone before or since ABA..... Makes you wonder who was abusing whom??

Be very careful... what you teach...

farmwifetwo

Emma,

A social story for Dimitri may help. Use actual pictures, his room, his kitchen, his bathroom, his bus, his school, his school room...

May make that transition much smoother. It is how we have transferred my youngest to new grades and new school's. Leave it where he can read it, at his leisure, and start by reading it every morning, leaving it beside his breakfast, etc.

Joanna

I never thought that basket holds were that bad until I read this post...you must be going through hard times...

Melanie Harper

At one point, we all had to do a sort of hold with The Boy for safety's sake, but not the style you described at all. He had totally asymptomatic ear infections for about a year until we (parents and teachers both) realized that the eventual ear infection prescriptions correlated exactly with the hear-banging and chair-throwing. But, the holds we used were using our own bodies as a basket to scoop him up and apply deep pressure while keeping limbs from flailing and any more damage from occurring.

As for ABA, our schools here have used modified behavior-and-response to teach specific tasks and behaviors, but have an overall Floortime-type approach to getting to know a child and building a relationship. It seems to be an effective combo.

And to overtalking things around The Boy, yeah, I'm so guilty of that! Having to use *less* words around him has been a 5 year learning process for me, and I'm still pretty bad at it...

Brenda (mamabegood)

You are so right, Kristina. Results-oriented, skill-oriented teaching .. is it for us parents .. so that we can feel we're making some sort of progress? Is it for school so we can get some kind of report card? Is it for society to feel better? Why do we focus on skills & repetition, verbal language? What about development for which there are no checklists?

Barbara

This post has been open on my browser all day as I wanted to comment thoughtfully (and today was busy). Agreeing with KWombles. Well, I might as well ditto her.

Be careful, very careful, of what you initiate. Setting precedent is very powerful also.

A whole lotta inadverdent teachin' goin' on.

I just retweeted a post by ChrisAlterio that you might like. He writes philosophically and mentions OCD.

Kristina

Thank you to everyone for all you've written; will respond in full plus ---


@Joanna, it has been many years since the basket hold was used on Charlie and it is definitely not being now--- things have been quite good, though with the inevitable difficulty--- thank you for your kind words!

Kristina

@Emma, actually it's very helpful
What you note. Charlie does pretty much the same, having a sudden, unwarranted 'freeze' or pause, even when what is next is somethings he likes. Perhs in part from a desire to prolong the anticipation? A bit of a 'choke' before turning to something new?,

emma

@farmwifetwo, thanks, I have tried social stories in the past but not with much organisation or consistency, I do need to try again.

@Kristina, I think there are actually a variety of reasons for any given situation. For us, general (and limited) knowledge of Angelman Syndrome means it's usually suggested that it's for attention, yes, sometimes this is the case but not often it is not.

Trying to work out what's going on, particularly when you feel pressure of time (school bus waiting)is so much more complex than ABC.

ps, I think Brenda's comment about measurable goals is pertinent.

Barbara

Could a pause in transition simple be the time it takes to process?

Kristina

@Michelle, thank you very, very much. That's the kind of study I would have liked to have cited when a school district first mentioned the basket hold to us.

Kristina

@Barbara and Emma,
My husband I have mentioned before has quite severe ADHD. At transition moments (for example, Friday morning when I was backing the car out the driveway to get to the train station), he may bring some interesting and at that moment not terribly relevant thought that I know I need to discuss--- and can't--- and he is very focused on that thing in those moments. And quite unaware of what he is doing! Something about needing to divert his thoughts from whatever is going on in front of him because transitions are stressful too for him.

Kristina

@farmwifetwo,
'We love him, we're not giving him back until we have to" --- that's so lovely-- I get a variation of that from Charlie's teachers these days ('we're so glad to have him'). It sure means a lot.

Kristina

@susansenator, someday, sometime, it would be very good to sit down with some coffee and just talk......... And for sure with everyone. One day....

Kristina

@Melanie, I think i just learned to talk less in the past two or so years! I do think a lot of all those years of feeling wr had to have a sort of language immersion environment for Charlie.....the quieter-ness has been good.

Kristina

@Sarah, yes!

@kwombles,
'Precautionary principles like you closed with are important guidelines; what could the long term ramifications be? How do we proceed in a way least likely to do harm but most likely to benefit the individual and the family?'

Imagine if researchers really put those questions into practise in designinng studies, and educators and behaviorists and psychologists when designing curricula and behavior plans......

KWombles

Kristina,
It would be revolutionary, wouldn't it? The individual's needs ahead of the researcher's, ahead of those who are placed into positions of authority. I think there's too often a rigidity of expectation on the part of the people who are in positions of power over our children. Maybe it's that they have too many folks under their care, maybe it's partly ideologically driven, but when you lose the individual in the midst of the paperwork and need to codify goals and work to specific target behaviors, and often act in reaction, it's a recipe for the individual to be lost.

There aren't any ready-made, one-size-fits-all answers for our children, and what works today may not work tomorrow, may in fact cause problems tomorrow.

It can be worrisome at the least, terrifying at its worst. Good friends along with us on the journey, along with caring professionals who do want what's best for our children, can ease the burdens of worry, terror, fear and make our paths easier to navigate.

(and chocolate, I'm a big believer in the sweet rush of dopamine from chocolate)

Joanna

Kristina, good for you for handling the situation the way that you do. Take care and good luck in the future.

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