Re: Hand Flapping - ANGELA

June 22, 2007

Here are my thoughts:

it may be something she is doing because she needs that sensory input. If

you look at behavior in terms of what motivates it (to escape, tangible

rewards, sensory, or attention), you can fill out a motivation assessment

scale and you would likely find that those type of behaviors would be

motivated by a sensory need. Here is the assessment scale link if you're

interested: http://www.udel.edu/cds/pbs/downloads/pbs_motivationassess.doc .

If she needs to do it for sensory reasons, then she should be allowed to do

it, however, they could start working on a behavior plan whereby she learns

to recognize when flapping starts, and maybe stand up and go to another area

to do it or learn to do something else (squeeze a ball, sit on a special

wedge that you can rock back and forth on, etc). For certain things with

Kennedy (hair twisting), I just put my hands together and twiddle my thumbs

and she immediately stops and puts her hands together and twiddles her

thumbs, for example. The goal is for her to recognize she is doing it

(twisting her hair - which makes some of it snap off at times so we don't

want her doing it all the time) and do the alternate behavior

(thumb-twiddling). Lately, I can just touch my hair or point to it and

she will start to put her hands together and twiddle until the feeling of

needing to twist hair passes (it's short). That is the best reccommendation

I can give with regard to hand-flapping. She seems to certainly have the

cognitive capacity to undertake this type of re-learning/recognition of the

behaviors.

In closing, the only thing I see as a " problem " in your email is that it

scares her teacher. Maybe someone could get some information or talk to her

about self-stimulatory behaviours in people who have sensory deficits to

help her understand the normalcy of it in that population and the reasons

why they engage in those behaviours. Tim Hartshorne might have some good

ideas on how to best explain that, what are some good papers on it, etc.

Please let us know how this goes, I am interested to hear,

PS - the poster for the conference is all done and I LOVE the picture you

sent me for it! Thanks again.

--

Weir

Personal Web Site:

http://chargesyndrome.info

The Adventures of Kennedy Blog:

http://chargesyndrome.blogspot.com

Secretary, CHARGE Syndrome Foundation Inc:

http://www.chargesyndrome.org

Email:

lisa@...

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

June 22, 2007

, thanks for this information and the assessment scale, which was

great to do, the self stimulation was the only one to get full marks,

which I knew already, but it was really interesting to do and it does

make me feel better knowing that she is not doing it to just annoy

me, even though sometimes she does. The raspberries that she blows

while she is flapping sometimes drive me insane and I wish I could

just flap my hands to escape because I feel overstimulated too. I

know that she actually needs to do this and I wouldn't like to take

it away from her, I really don't want it to affect her school work or

the way her friends think of her and for the most selfish reason, I

would love to have a day when I can go out with her and not feel

stared at, my face burns sometimes and I can hear people speculating,

it doesn't really bother me anymore and I don't even want to change

her... it is just hard, you know? oh, what am I thinking, ofcourse

you know, you are the only people who actually understand... sorry.

Anyway, thank you so much for all your responses, it is so good to

feel that I am not alone and when I read your emails, I actually feel

quite guilty that I am even making an issue of it. Thanks again.

I would so enjoy meeting all your kids, I wish I was coming to the

conference. I hope you all have a good time.

with love,

>

> Here are my thoughts:

> it may be something she is doing because she needs that sensory

input. If

> you look at behavior in terms of what motivates it (to escape,

tangible

> rewards, sensory, or attention), you can fill out a motivation

assessment

> scale and you would likely find that those type of behaviors would

be

> motivated by a sensory need. Here is the assessment scale link if

you're

> interested:

http://www.udel.edu/cds/pbs/downloads/pbs_motivationassess.doc .

> If she needs to do it for sensory reasons, then she should be

allowed to do

> it, however, they could start working on a behavior plan whereby

she learns

> to recognize when flapping starts, and maybe stand up and go to

another area

> to do it or learn to do something else (squeeze a ball, sit on a

special

> wedge that you can rock back and forth on, etc). For certain

things with

> Kennedy (hair twisting), I just put my hands together and twiddle

my thumbs

> and she immediately stops and puts her hands together and twiddles

her

> thumbs, for example. The goal is for her to recognize she is doing

it

> (twisting her hair - which makes some of it snap off at times so we

don't

> want her doing it all the time) and do the alternate behavior

> (thumb-twiddling). Lately, I can just touch my hair or point to it

and

> she will start to put her hands together and twiddle until the

feeling of

> needing to twist hair passes (it's short). That is the best

reccommendation

> I can give with regard to hand-flapping. She seems to certainly

have the

> cognitive capacity to undertake this type of re-

learning/recognition of the

> behaviors.

>

> In closing, the only thing I see as a " problem " in your email is

that it

> scares her teacher. Maybe someone could get some information or

talk to her

> about self-stimulatory behaviours in people who have sensory

deficits to

> help her understand the normalcy of it in that population and the

reasons

> why they engage in those behaviours. Tim Hartshorne might have

some good

> ideas on how to best explain that, what are some good papers on it,

etc.

>

> Please let us know how this goes, I am interested to hear,

>

> PS - the poster for the conference is all done and I LOVE the

picture you

> sent me for it! Thanks again.

>

> --

> Weir

>

> Personal Web Site:

> http://chargesyndrome.info

>

> The Adventures of Kennedy Blog:

> http://chargesyndrome.blogspot.com

>

> Secretary, CHARGE Syndrome Foundation Inc:

> http://www.chargesyndrome.org

>

> Email:

> lisa@...

>

> " It is far better to grasp the universe as it really is than to

persist in

> delusion, however satisfying and reassuring. " --Carl Sagan

>

June 23, 2007

,

I don't have a lot to add to the wonderful advice you have already recieved.

But, I did want to say that perhaps during the group times that are so exciting

for her, maybe she can have some small " fidget toys " to have in her hands for a

bit of feedback. The tiny bumpy balls ( I can't call up the name right now),

metal jacks, small rubber balls, things would feel good to her and which would

be small enough to not call great attention to them but give her enough feedback

(along with an explanation of why she is being allowed them) to remind her that

they are to help with the flapping.

pam