Re: behavior at school

September 5, 2006

I admire the way you dealt with this Kim. I am glad that it looks like

the school will have a clearer understanding as a result. There is

still no reason why the school needed to have a meeting without you

there. That is plain silly. Such a lack of trust in the parents. But

you were right to not fight that battle right now. There are more

important ones. Our " team " for meets with us once a month all

year, and has since Kindergarten. It helps a great deal with

communication and making sure we are all on the same page. It's good

they are offering something like that.

Tim

S. Hartshorne, Ph.D.

Professor of Psychology

Central Michigan University

Mount Pleasant, MI 48859

phone

fax

tim.hartshorne@...

September 5, 2006

Kim-

You are amazing. I hope the meeting goes as you expect and that things go

well for Dylan this year.

Michele W

September 5, 2006

I keep holding onto the faith that it has to lead to good...... Kim

>

> Kim-

>

> You are amazing. I hope the meeting goes as you expect and that things go

> well for Dylan this year.

>

> Michele W

>

September 5, 2006

Thanks Tim

It is hard to play the game, to keep emotions in check, to act with

hopes for positive change when every fiber in my mother's body says my

child is suddenly not in a safe place - how fast that change happened.

But it is when parent emotion reaches the top that we lose the game,

that we lose credibility. I had my angry vents and my threats with

friends, not the school.

>

> I admire the way you dealt with this Kim. I am glad that it looks like

> the school will have a clearer understanding as a result. There is

> still no reason why the school needed to have a meeting without you

> there. That is plain silly. Such a lack of trust in the parents. But

> you were right to not fight that battle right now. There are more

> important ones. Our " team " for meets with us once a month all

> year, and has since Kindergarten. It helps a great deal with

> communication and making sure we are all on the same page. It's good

> they are offering something like that.

>

> Tim

>

> S. Hartshorne, Ph.D.

>

> Professor of Psychology

>

> Central Michigan University

>

> Mount Pleasant, MI 48859

>

> phone

>

> fax

>

> tim.hartshorne@...

>

September 5, 2006

kim, glad things are better with dylan--where is tyler moving? is this a good

move for everyone involved?

" behavior " at school

Hello Everyone,

Dylan's school started the beginning of August. He has the same

teacher as last year and the same intervener he has had for many

years. (This teacher really has been great for Dylan in many, many

ways.)

Last week I got a letter saying " a couple of weeks ago " the teacher

had contacted the principal about Dylan's behavior causing a risk to

his safety or the safety of the staff.

They then formed a " safety team " which consisted of the teacher, the

intervener, Doe, and the deafblind specialist on campus who know

Dylan, although Doe is the only one who " knows " CHARGE taking time to

go to the CHARGE conference in Miami, to hear Brown in Phoenix,

ASKING ME and LISTENING TO DYLAN! Then the team had the asssitant

principal and the counselor who not only don't know Dylan, they don't

know deafblindness or CHARGE. This team was to meet on Friday to " see

where everyone was at with this " and then there would be a meeting

that we (Roy and I) would be invited to.

Needless to say it was an intense week. Doe has been a wreck too,

because she knows it is just Dylan being Dylan. He is no different

than he has always been.

It seems what happened is the classroom teacher was working one on one

with Dylan and he got " wild " . She began to have the thought which I

am sure we have all had of, " Oh my God, what are we going to do as he

gets bigger and bigger. " The problem began when she chose to first

bring it up to the principal instead of to me. There is much I could

have done to help problem solve whatever situations were of concern.

But once safety of a student is brought up it is a legal concern and

down that path we go.

I did get to speak with the teacher this week, gave her the American

Journal of Medical Genetics volume with 4 articles highlighted to

start and to give her some history of Dylan's states. She then took

me to meet the counselor who had been called in and who is a DREAM -

Thank you Lord! Apparently during this 2 weeks she has been on a

massive learn about CHARGE venture and has been talking with the

numerous other people on Dylan's team who do know Dylan,

deafblindness, and varying degrees of CHARGE knowledge, gathering

articles from our Defablind Project who, due to my influence over the

years, has some understanding that not all CHARGE articles are current

or relevant - we have learned a lot in the past 30 years. She then

listened to me for a long time and all my concerns about the

uselessness of a behavior plan for Dylan.

(She even asked what I saw for Dylan's future and if I thought his IEP

goals were appropriate to achieve that.) She got that we - the adults

- need the behavior plan. What are we going to do in response to

Dylan being Dylan rather than trying to take away functional

adaptations that Dylan needs.

One example is sometimes he leans on his intervener too much and won't

walk independently or if he is independent he goes wild. I was able

to explain why he needs this additional support. That concern is no

more, Dylan will be allowed the supports he needs.

On his state changes she was able to get that we may see one behavior

but there may be 20 different antecedents that precipitate it and we

may only be able to " see " 5 of them. We can't have a straight plan

that says if this, then this, because it is not always the same. The

rest of the team needs to learn more about Dylan, about CHARGE, about

deafblindess, and about his HANDLE program - the approach that gives

me a reference point to at least begin to understand why he is doing

what he is doing from a neurodevelopmental perspective and gives me a

repertoire of activities to choose from that will help Dylan

reorganize or regulate his system, so he can again be engaged. HANDLE

is an approach, not a treatment or therapy; it is dynamic and fluid as

is Dylan.

I can't say if you see this, then do this, because sometimes Dylan's

body tells me no that is not what we need this time. So I try

something else. I am so grateful this counselor is a person was

willing to learn something new, rather than just do what she has

always done.

Because of my comfort with the counselor, intervener and teacher

following these talks, I allowed the meeting to happen without me. I

do not have the formal report from it yet, but do know that the more

typical CHARGE adaptations will no longer be of concern - in fact the

team is willing to learn more about them, so they can use that

understanding to impact his programming, such as why he needs to lie

on his back to sign, why he needs horizontal breaks and so on... The

safety concerns are valid, if he goes into a " frantic " state then he

is likely to head butt or he could slip and fall or whatever. So the

energy of follow up meetings with Roy and I there, will be to problem

solve OUR responses to these states, to problem solve certain

environments that seem to be a concern, such as the bathroom.

In addition Dylan's IEP allows for 4 staffings a year to keep us all

on the same page and to learn from what Dylan has taught us the

preceding quarter, so we can adapt our approach for the next quarter.

Because of all this, we are actually getting one set up. The teacher

is willing, have not yet talked with the deafblind specialist about

it, but I am hopeful that I will be able to do a staff training on

Dylan bringing together the multiple viewpoints I have of looking at

his function - from the view of parent, nurse, intervener trainer,

behavior specialist, and the other knowledge I have gained about

CHARGE, deafblindness, and HANDLE - how that all comes together to

influence our response to Dylan. If we have this foundation, then how

much more effective will the follow up staffings be. I don't want the

staffings only called, because there is a problem.

I have also been asked to come in and do a training on Dylan's HANDLE

activities, so more than Doe knows how and when to use them.

Through all of this the teacher and the counselor now " get " what Doe's

job as an intervener is like, and why it is so crucial that he does

have a 1:1 person with him, even when he appears to be fine and she

doesn't appear to be doing anything. She is constantly working to

help Dylan be engaged for learning; that engagement can be lost in a

second and can be so hard to get back. She knows when to step in and

when to step back, when to do with Dylan, when he can do himself, when

to push him to learn something new and when pushing him will backfire

- they are getting that this is no easy job. We have the CORE

training for our next group of Intervener's the end of September, I am

hoping they will come.

So as much as not being notified for 2 weeks was a BAD way to start,

it seems it will lead to many good things. I am so glad, because ASDB

has been a VERY good place for Dylan to be and I know if we were in

the local school we would be lucky to have one person " get it " whereas

on campus we have MANY. The whole situation shows though that when

one person doesn't get it or gets stuck on their perspective is the

" right " perspective, then the whole thing can rapidly be destroyed.

One thing I was very clear of (after my years of getting Tyler through

public school) is if all this had led to a strict behavior plan where

Dylan had to perform in such and such a way or else.... I would have

pulled him from school. This realization made me very sad, because I

know Dylan needs the reosurces that ASDB has to offer, he needs the

other kids and so on, but a behavior plan like that would have put

Dylan at risk and I simply couldn't allow it. And at long last,

perhaps I can be a true part of Dylan's team, not just at IEP time,

but all the time. I can't teach educators how to teach, but I do have

a lot to offer in helping problem solve situations to make them work

for Dylan. What a relief the path is leaning towards learning and

growth instead of control.

Oh and for all you who follow behavior, would any of you be surprised

that Dylan had a sinus infection in the 2 weeks when I had not yet

been notified and the school was seeing a need for more support

walking, and more wild?????

--

Kim

Mom to Dylan 10 CHaRGE, Kayla 15, Tyler 18 (moving out in one week)

and wife to Roy who makes all things possible in our lives.

September 6, 2006

Hi ,

Tyler is moving out on the 11th, yes it is a good move for all of us.

He is 18 and ready for his own place, working 2 jobs to pay for it, is

happy and easy going, and dare I say responsible without jinxing the

phase.... His apartment is only about 15 minutes away, not all the

way to Begium like the 18 yer old up the street - thank goodness.

>

> kim, glad things are better with dylan--where is tyler moving? is this a

> good move for everyone involved?

>

> " behavior " at school

>

> Hello Everyone,

>

> Dylan's school started the beginning of August. He has the same

> teacher as last year and the same intervener he has had for many

> years. (This teacher really has been great for Dylan in many, many

> ways.)

>

> Last week I got a letter saying " a couple of weeks ago " the teacher

> had contacted the principal about Dylan's behavior causing a risk to

> his safety or the safety of the staff.

> They then formed a " safety team " which consisted of the teacher, the

> intervener, Doe, and the deafblind specialist on campus who know

> Dylan, although Doe is the only one who " knows " CHARGE taking time to

> go to the CHARGE conference in Miami, to hear Brown in Phoenix,

> ASKING ME and LISTENING TO DYLAN! Then the team had the asssitant

> principal and the counselor who not only don't know Dylan, they don't

> know deafblindness or CHARGE. This team was to meet on Friday to " see

> where everyone was at with this " and then there would be a meeting

> that we (Roy and I) would be invited to.

>

> Needless to say it was an intense week. Doe has been a wreck too,

> because she knows it is just Dylan being Dylan. He is no different

> than he has always been.

>

> It seems what happened is the classroom teacher was working one on one

> with Dylan and he got " wild " . She began to have the thought which I

> am sure we have all had of, " Oh my God, what are we going to do as he

> gets bigger and bigger. " The problem began when she chose to first

> bring it up to the principal instead of to me. There is much I could

> have done to help problem solve whatever situations were of concern.

> But once safety of a student is brought up it is a legal concern and

> down that path we go.

>

> I did get to speak with the teacher this week, gave her the American

> Journal of Medical Genetics volume with 4 articles highlighted to

> start and to give her some history of Dylan's states. She then took

> me to meet the counselor who had been called in and who is a DREAM -

> Thank you Lord! Apparently during this 2 weeks she has been on a

> massive learn about CHARGE venture and has been talking with the

> numerous other people on Dylan's team who do know Dylan,

> deafblindness, and varying degrees of CHARGE knowledge, gathering

> articles from our Defablind Project who, due to my influence over the

> years, has some understanding that not all CHARGE articles are current

> or relevant - we have learned a lot in the past 30 years. She then

> listened to me for a long time and all my concerns about the

> uselessness of a behavior plan for Dylan.

> (She even asked what I saw for Dylan's future and if I thought his IEP

> goals were appropriate to achieve that.) She got that we - the adults

> - need the behavior plan. What are we going to do in response to

> Dylan being Dylan rather than trying to take away functional

> adaptations that Dylan needs.

>

> One example is sometimes he leans on his intervener too much and won't

> walk independently or if he is independent he goes wild. I was able

> to explain why he needs this additional support. That concern is no

> more, Dylan will be allowed the supports he needs.

>

> On his state changes she was able to get that we may see one behavior

> but there may be 20 different antecedents that precipitate it and we

> may only be able to " see " 5 of them. We can't have a straight plan

> that says if this, then this, because it is not always the same. The

> rest of the team needs to learn more about Dylan, about CHARGE, about

> deafblindess, and about his HANDLE program - the approach that gives

> me a reference point to at least begin to understand why he is doing

> what he is doing from a neurodevelopmental perspective and gives me a

> repertoire of activities to choose from that will help Dylan

> reorganize or regulate his system, so he can again be engaged. HANDLE

> is an approach, not a treatment or therapy; it is dynamic and fluid as

> is Dylan.

> I can't say if you see this, then do this, because sometimes Dylan's

> body tells me no that is not what we need this time. So I try

> something else. I am so grateful this counselor is a person was

> willing to learn something new, rather than just do what she has

> always done.

>

> Because of my comfort with the counselor, intervener and teacher

> following these talks, I allowed the meeting to happen without me. I

> do not have the formal report from it yet, but do know that the more

> typical CHARGE adaptations will no longer be of concern - in fact the

> team is willing to learn more about them, so they can use that

> understanding to impact his programming, such as why he needs to lie

> on his back to sign, why he needs horizontal breaks and so on... The

> safety concerns are valid, if he goes into a " frantic " state then he

> is likely to head butt or he could slip and fall or whatever. So the

> energy of follow up meetings with Roy and I there, will be to problem

> solve OUR responses to these states, to problem solve certain

> environments that seem to be a concern, such as the bathroom.

>

> In addition Dylan's IEP allows for 4 staffings a year to keep us all

> on the same page and to learn from what Dylan has taught us the

> preceding quarter, so we can adapt our approach for the next quarter.

> Because of all this, we are actually getting one set up. The teacher

> is willing, have not yet talked with the deafblind specialist about

> it, but I am hopeful that I will be able to do a staff training on

> Dylan bringing together the multiple viewpoints I have of looking at

> his function - from the view of parent, nurse, intervener trainer,

> behavior specialist, and the other knowledge I have gained about

> CHARGE, deafblindness, and HANDLE - how that all comes together to

> influence our response to Dylan. If we have this foundation, then how

> much more effective will the follow up staffings be. I don't want the

> staffings only called, because there is a problem.

>

> I have also been asked to come in and do a training on Dylan's HANDLE

> activities, so more than Doe knows how and when to use them.

>

> Through all of this the teacher and the counselor now " get " what Doe's

> job as an intervener is like, and why it is so crucial that he does

> have a 1:1 person with him, even when he appears to be fine and she

> doesn't appear to be doing anything. She is constantly working to

> help Dylan be engaged for learning; that engagement can be lost in a

> second and can be so hard to get back. She knows when to step in and

> when to step back, when to do with Dylan, when he can do himself, when

> to push him to learn something new and when pushing him will backfire

> - they are getting that this is no easy job. We have the CORE

> training for our next group of Intervener's the end of September, I am

> hoping they will come.

>

> So as much as not being notified for 2 weeks was a BAD way to start,

> it seems it will lead to many good things. I am so glad, because ASDB

> has been a VERY good place for Dylan to be and I know if we were in

> the local school we would be lucky to have one person " get it " whereas

> on campus we have MANY. The whole situation shows though that when

> one person doesn't get it or gets stuck on their perspective is the

> " right " perspective, then the whole thing can rapidly be destroyed.

>

> One thing I was very clear of (after my years of getting Tyler through

> public school) is if all this had led to a strict behavior plan where

> Dylan had to perform in such and such a way or else.... I would have

> pulled him from school. This realization made me very sad, because I

> know Dylan needs the reosurces that ASDB has to offer, he needs the

> other kids and so on, but a behavior plan like that would have put

> Dylan at risk and I simply couldn't allow it. And at long last,

> perhaps I can be a true part of Dylan's team, not just at IEP time,

> but all the time. I can't teach educators how to teach, but I do have

> a lot to offer in helping problem solve situations to make them work

> for Dylan. What a relief the path is leaning towards learning and

> growth instead of control.

>

> Oh and for all you who follow behavior, would any of you be surprised

> that Dylan had a sinus infection in the 2 weeks when I had not yet

> been notified and the school was seeing a need for more support

> walking, and more wild?????

> --

> Kim

> Mom to Dylan 10 CHaRGE, Kayla 15, Tyler 18 (moving out in one week)

> and wife to Roy who makes all things possible in our lives.

>

September 6, 2006

glad it is a good move and he is taking responsibility --you've obviously done a

great job raising him!!