RE: Re:Tim's behavior statements

February 10, 2004

Hi Ann and Tim,

As always, I wish to thank you both for your important contributions to

understanding CHARGE.

Ann, I don't see anything wrong with your behavior at all!! It is

stellar. :-)

My perspective on this particular discussion is... that no matter what,

of most importance to me, are the underlying biochemical,

endocrinological, gastrointestinal, hormonal, immunological and

neurological causes of the behaviors that cause some children with

CHARGE to not

be able to access communication, language, socializing, and learning to

the degree to which I know they are capable.

Re: Ann's behavior

You got it here. " >>while I might understand his communication

(purpose) he may not know that I do. So I should respond to it by

examining his ears or something like that to further shape his

communication. "

While the newborn infant may cry, if there is no response or

feedback, is it really " communication " ? In order for the behavior to

be classified as " communication " , there needs to be a process going

on of a)being aware there IS in fact another out there to recieve the

message being aware that the behavior itself will cause an effect

c)being aware of a response, and therefor a reciprocal communicative

process has taken place. Often young children who are deafblind, by

vurtue of inefficient sensory processing, and/or being unable to gain

information from the environment due to sensory loss, don't reach

some of these stages of awareness in each and every behavior or

reflex as it unfolds. If you define " communication " as an

interactive process, which requires more then one individual in order

for the process of " communication " to take place, then behavior is

not always communication. Depending if you respond or not,

communication can happen, but only through the child's awareness of

the follow-up interaction taking place. I think the infants first

cry is probably a neuro response to a state of change and lack of

warmth. If you look at many of the infants early mov't, they are

based on CNS reflex reactions. The rooting reflex is an example...by

grace they have early vision to focus on Mother's breast but it is

not a behavior which gets them attached...its a reflex. I would argue

that the same type of " neuro " responses and adjustments take place in

the process of these particular CHARGE-like challenging " behaviors "

unfolding, and it is usually impossible during this short time to

communicate anything in response, until the CNS system is ready for

more input. OK that was really hard to spell " behaviour " American-

like as we spell it with a " u " . I see your heading: my behaviour is

bad eh?

Ann Gloyn,

Specialist Teacher

Canada

> Hi Ann,

>

> Thanks for your comments. I feel like I am starting to get a

handle on

> some of the behavior stuff, which is encouraging. In terms of

behavior

> as communication. I began with the principle that all behavior has

a

> purpose. This is the position of Adlerians (who follow the theory

of

> Alfred Adler), as I am from that orientation. Once you understand

the

> purpose of a behavior, the behavior makes sense. This is true of a

> hiccup, eye blink, and other physiological responses. You can also

> think of all behavior as a symptom, but my problem with that term is

> that it gets people thinking from a disease orientation, and I want

to

> avoid that. I went to behavior as communication after being

strongly

> influenced by Ed Carr and his colleagues, particularly his book

> Communication-Based Intervention for Problem Behavior (published by

> s). I liked this because it gets people thinking about what

the

> child may be telling us by their behavior. I agree that it may not

be

> conscious, or it might be pre-verbal, but what is it telling us?

When a

> baby cries it may be instinctive, but mothers can often tell that

it is

> a hungry cry, or a sleepy cry, or a discomfort cry, or an attention

cry.

> As mothers differentially respond to cries, the baby begins to shape

> their cry even more so that eventually the distinctions become

sharper

> and communication is established. When crams something sharp

or

> vibrating into his neck, it generally means his ears hurt. In

writing

> this it now occurs to me that while I might understand his

communication

> (purpose) he may not know that I do. So I should respond to it by

> examining his ears or something like that to further shape his

> communication. Does that make sense?

>

> For those of you who responded to my last survey, you will be

getting

> the next one very soon (with luck it will be in tomorrow's mail).

Your

> assistance with the research is deeply appreciated. For those who

were

> not a part of the last study, you will not get one because we have

so

> much data on the other group already. But Kim Blake and Jude

> and I have a ton of studies in mind, and so your turn will come.

>

> Tim Hartshorne (father of )

>

> S. Hartshorne, Ph.D.

> Assistant Vice Provost and Professor of Psychology

> Central Michigan University

> Mount Pleasant, MI 48858

> (989)774-3632 phone

> (989)774-1408 (fax)

> harts1ts@c...

>

February 10, 2004

All I can say is I hope we figure out the source soon. Dylan is heading

into another off cycle and I can only pray that it is short lived and we do

not lose all the ground we have gained over the last few months. I do my

best to rule out possible sources of the change, constipation, food

allergies, structural malalignment, ear infection, eye problems; handle the

symptoms, increase sensory diet, time to be wild in his crib, avoid intense

feedback to the behavior.

I should clarify when I refer to CHARGE behaviors, I do not simply refer to

the physical aggression etc, but more to Dylan's loss of engagement, his

need to spin, throw, kick, and other vigorous input. My concern is that as

he gets older some of the aggressive behaviors occur, although I do not

think he is being mean per se, but is again needing that intense input. I

wonder how I will manage when he is older if something does not change now.

He is 40 lbs and some days I can barely get him ready for school. Most days

he is happy, participates in his daily care, interacts, does great at school

etc. I am so grateful for the on cycles, but wish I felt like I had

something I could do to prevent the off cycles. Until we understand what is

going on physically when these changes occur, we will all continue to deal

with the symptoms only, no matter if we call it communication or not.

Kim

Mom to Dylan 7 CHaRGE, Kayla 13, Tyler 15

> Hi Ann and Tim,

>

> As always, I wish to thank you both for your important contributions to

> understanding CHARGE.

>

> Ann, I don't see anything wrong with your behavior at all!! It is

> stellar. :-)

>

> My perspective on this particular discussion is... that no matter what,

> of most importance to me, are the underlying biochemical,

> endocrinological, gastrointestinal, hormonal, immunological and

> neurological causes of the behaviors that cause some children with

> CHARGE to not

> be able to access communication, language, socializing, and learning to

> the degree to which I know they are capable.

>

> Re: Ann's behavior

>

> You got it here. " >>while I might understand his communication

> (purpose) he may not know that I do. So I should respond to it by

> examining his ears or something like that to further shape his

> communication. "

> While the newborn infant may cry, if there is no response or

> feedback, is it really " communication " ? In order for the behavior to

> be classified as " communication " , there needs to be a process going

> on of a)being aware there IS in fact another out there to recieve the

> message being aware that the behavior itself will cause an effect

> c)being aware of a response, and therefor a reciprocal communicative

> process has taken place. Often young children who are deafblind, by

> vurtue of inefficient sensory processing, and/or being unable to gain

> information from the environment due to sensory loss, don't reach

> some of these stages of awareness in each and every behavior or

> reflex as it unfolds. If you define " communication " as an

> interactive process, which requires more then one individual in order

> for the process of " communication " to take place, then behavior is

> not always communication. Depending if you respond or not,

> communication can happen, but only through the child's awareness of

> the follow-up interaction taking place. I think the infants first

> cry is probably a neuro response to a state of change and lack of

> warmth. If you look at many of the infants early mov't, they are

> based on CNS reflex reactions. The rooting reflex is an example...by

> grace they have early vision to focus on Mother's breast but it is

> not a behavior which gets them attached...its a reflex. I would argue

> that the same type of " neuro " responses and adjustments take place in

> the process of these particular CHARGE-like challenging " behaviors "

> unfolding, and it is usually impossible during this short time to

> communicate anything in response, until the CNS system is ready for

> more input. OK that was really hard to spell " behaviour " American-

> like as we spell it with a " u " . I see your heading: my behaviour is

> bad eh?

> Ann Gloyn,

> Specialist Teacher

> Canada

>

>> Hi Ann,

>>

>> Thanks for your comments. I feel like I am starting to get a

> handle on

>> some of the behavior stuff, which is encouraging. In terms of

> behavior

>> as communication. I began with the principle that all behavior has

> a

>> purpose. This is the position of Adlerians (who follow the theory

> of

>> Alfred Adler), as I am from that orientation. Once you understand

> the

>> purpose of a behavior, the behavior makes sense. This is true of a

>> hiccup, eye blink, and other physiological responses. You can also

>> think of all behavior as a symptom, but my problem with that term is

>> that it gets people thinking from a disease orientation, and I want

> to

>> avoid that. I went to behavior as communication after being

> strongly

>> influenced by Ed Carr and his colleagues, particularly his book

>> Communication-Based Intervention for Problem Behavior (published by

>> s). I liked this because it gets people thinking about what

> the

>> child may be telling us by their behavior. I agree that it may not

> be

>> conscious, or it might be pre-verbal, but what is it telling us?

> When a

>> baby cries it may be instinctive, but mothers can often tell that

> it is

>> a hungry cry, or a sleepy cry, or a discomfort cry, or an attention

> cry.

>> As mothers differentially respond to cries, the baby begins to shape

>> their cry even more so that eventually the distinctions become

> sharper

>> and communication is established. When crams something sharp

> or

>> vibrating into his neck, it generally means his ears hurt. In

> writing

>> this it now occurs to me that while I might understand his

> communication

>> (purpose) he may not know that I do. So I should respond to it by

>> examining his ears or something like that to further shape his

>> communication. Does that make sense?

>>

>> For those of you who responded to my last survey, you will be

> getting

>> the next one very soon (with luck it will be in tomorrow's mail).

> Your

>> assistance with the research is deeply appreciated. For those who

> were

>> not a part of the last study, you will not get one because we have

> so

>> much data on the other group already. But Kim Blake and Jude

>

>> and I have a ton of studies in mind, and so your turn will come.

>>

>> Tim Hartshorne (father of )

>>

>> S. Hartshorne, Ph.D.

>> Assistant Vice Provost and Professor of Psychology

>> Central Michigan University

>> Mount Pleasant, MI 48858

>> (989)774-3632 phone

>> (989)774-1408 (fax)

>> harts1ts@c...

>>

February 10, 2004

Kim wrote:

" Until we understand what is

going on physically when these changes occur, we will all continue

to deal

with the symptoms only, no matter if we call it communication or

not. "

Kim

Mom to Dylan 7 CHaRGE, Kayla 13, Tyler 15

I agree, Kim. Nicely stated.

> Hi Ann and Tim,

>

> As always, I wish to thank you both for your important contributions

to