Re: cognitive behaviour therapy

[Guest guest]

Colleen,

From a web site - It seemed best to post the formal definition, not my

interpretation. This from http://www.cognitivetherapy.com/basics.html

" Just what is CBT? How does it work?

Cognitive behavior therapy* combines two very effective kinds of

psychotherapy ‹ cognitive therapy and behavior therapy.

Behavior therapy helps you weaken the connections between troublesome

situations and your habitual reactions to them. Reactions such as fear,

depression or rage, and self-defeating or self-damaging behavior. It also

teaches you how to calm your mind and body, so you can feel better, think

more clearly, and make better decisions.

Cognitive therapy teaches you how certain thinking patterns are causing your

symptoms ‹ by giving you a distorted picture of what's going on in your

life, and making you feel anxious, depressed or angry for no good reason, or

provoking you into ill-chosen actions. "

My opinion not knowing a and not being a mental health provider, just an

observer of human behavior and an asker of a lot of questions, so take with

a grain of salt.

I would be afraid of cognitive behavioral therapy for by itself - not

because it is a poor form of therapy, actually it is very successful therapy

for many people, but because I do not think it takes into account the subtle

neurodevelopmental skills that form the basis for learning, socialization,

behavior and so on. That is where the neuropsychologist or HANDLE or

Perkins or ______ comes in.

If you feel sure has all of the neuro-developmental skills to

successfully do what is asked of her, then this could be the perfect

approach. If there are areas of difficulty for her, I would want to find a

way to understand those areas of difficulty before jumping into therapy as

the only solution.

Cognitive behavioral therapists can be a lifeline for parents though in

teaching us skills that help us parent the child while the child gains the

neurodevelopmental skills - as long as the therapist does not imply that if

you were only a better parent she would not have these learning, social,

behavioral or whatever issues. It is not 's fault and it is not your

fault! They are simply tools that help us parent a child who is wired a bit

different and who is not responding to our " typical " parenting strategies.

It feels odd writing this, because my boss and Dylan's Godfather does

cognitive behavioral therapy and I know it works regardless of the

underlying cause. I am just at a place in life where I think there are

other factors that come to play here and I hesitate to put too much

responsibility for changing whatever the problem is on the child - when we

already know their skills are weak - instead I ask, how can we enhance their

strengths, while we build up their weaknesses? How can we shape the

environment to support them in the most functional way? How can we minimize

extraneous stressors so their energy can be focused on the task at hand? And

so on.

I do not know if any of this is useful to you - I just sense that things are

very rough right now and I hurt to think of being blamed by others as

if whatever the issue is, is simply a choice to be made by .

Kim

> Hi Kim,

> I just wanted to know anything about it. My daughter's psych talked to us

> about it in conversation. It may be something we use with her in the future.

> Right now we are doing a lot of talking and I am seeing a downward spiral in

> my daughter and I am falling to pieces. So, I'm not really sure what I need

> to know.

>

> Sorry to be so vague. I am overwhelmed and it has been a long time since I

> was in this place. I have a high functioning child and thought I was over a

> lot. Little did I know....

>

> Colleen

>

>

[Guest guest]

Colleen,

From a web site - It seemed best to post the formal definition, not my

interpretation. This from http://www.cognitivetherapy.com/basics.html

" Just what is CBT? How does it work?

Cognitive behavior therapy* combines two very effective kinds of

psychotherapy ‹ cognitive therapy and behavior therapy.

Behavior therapy helps you weaken the connections between troublesome

situations and your habitual reactions to them. Reactions such as fear,

depression or rage, and self-defeating or self-damaging behavior. It also

teaches you how to calm your mind and body, so you can feel better, think

more clearly, and make better decisions.

Cognitive therapy teaches you how certain thinking patterns are causing your

symptoms ‹ by giving you a distorted picture of what's going on in your

life, and making you feel anxious, depressed or angry for no good reason, or

provoking you into ill-chosen actions. "

My opinion not knowing a and not being a mental health provider, just an

observer of human behavior and an asker of a lot of questions, so take with

a grain of salt.

I would be afraid of cognitive behavioral therapy for by itself - not

because it is a poor form of therapy, actually it is very successful therapy

for many people, but because I do not think it takes into account the subtle

neurodevelopmental skills that form the basis for learning, socialization,

behavior and so on. That is where the neuropsychologist or HANDLE or

Perkins or ______ comes in.

If you feel sure has all of the neuro-developmental skills to

successfully do what is asked of her, then this could be the perfect

approach. If there are areas of difficulty for her, I would want to find a

way to understand those areas of difficulty before jumping into therapy as

the only solution.

Cognitive behavioral therapists can be a lifeline for parents though in

teaching us skills that help us parent the child while the child gains the

neurodevelopmental skills - as long as the therapist does not imply that if

you were only a better parent she would not have these learning, social,

behavioral or whatever issues. It is not 's fault and it is not your

fault! They are simply tools that help us parent a child who is wired a bit

different and who is not responding to our " typical " parenting strategies.

It feels odd writing this, because my boss and Dylan's Godfather does

cognitive behavioral therapy and I know it works regardless of the

underlying cause. I am just at a place in life where I think there are

other factors that come to play here and I hesitate to put too much

responsibility for changing whatever the problem is on the child - when we

already know their skills are weak - instead I ask, how can we enhance their

strengths, while we build up their weaknesses? How can we shape the

environment to support them in the most functional way? How can we minimize

extraneous stressors so their energy can be focused on the task at hand? And

so on.

I do not know if any of this is useful to you - I just sense that things are

very rough right now and I hurt to think of being blamed by others as

if whatever the issue is, is simply a choice to be made by .

Kim

> Hi Kim,

> I just wanted to know anything about it. My daughter's psych talked to us

> about it in conversation. It may be something we use with her in the future.

> Right now we are doing a lot of talking and I am seeing a downward spiral in

> my daughter and I am falling to pieces. So, I'm not really sure what I need

> to know.

>

> Sorry to be so vague. I am overwhelmed and it has been a long time since I

> was in this place. I have a high functioning child and thought I was over a

> lot. Little did I know....

>

> Colleen

>

>

[Guest guest]

Colleen,

From a web site - It seemed best to post the formal definition, not my

interpretation. This from http://www.cognitivetherapy.com/basics.html

" Just what is CBT? How does it work?

Cognitive behavior therapy* combines two very effective kinds of

psychotherapy ‹ cognitive therapy and behavior therapy.

Behavior therapy helps you weaken the connections between troublesome

situations and your habitual reactions to them. Reactions such as fear,

depression or rage, and self-defeating or self-damaging behavior. It also

teaches you how to calm your mind and body, so you can feel better, think

more clearly, and make better decisions.

Cognitive therapy teaches you how certain thinking patterns are causing your

symptoms ‹ by giving you a distorted picture of what's going on in your

life, and making you feel anxious, depressed or angry for no good reason, or

provoking you into ill-chosen actions. "

My opinion not knowing a and not being a mental health provider, just an

observer of human behavior and an asker of a lot of questions, so take with

a grain of salt.

I would be afraid of cognitive behavioral therapy for by itself - not

because it is a poor form of therapy, actually it is very successful therapy

for many people, but because I do not think it takes into account the subtle

neurodevelopmental skills that form the basis for learning, socialization,

behavior and so on. That is where the neuropsychologist or HANDLE or

Perkins or ______ comes in.

If you feel sure has all of the neuro-developmental skills to

successfully do what is asked of her, then this could be the perfect

approach. If there are areas of difficulty for her, I would want to find a

way to understand those areas of difficulty before jumping into therapy as

the only solution.

Cognitive behavioral therapists can be a lifeline for parents though in

teaching us skills that help us parent the child while the child gains the

neurodevelopmental skills - as long as the therapist does not imply that if

you were only a better parent she would not have these learning, social,

behavioral or whatever issues. It is not 's fault and it is not your

fault! They are simply tools that help us parent a child who is wired a bit

different and who is not responding to our " typical " parenting strategies.

It feels odd writing this, because my boss and Dylan's Godfather does

cognitive behavioral therapy and I know it works regardless of the

underlying cause. I am just at a place in life where I think there are

other factors that come to play here and I hesitate to put too much

responsibility for changing whatever the problem is on the child - when we

already know their skills are weak - instead I ask, how can we enhance their

strengths, while we build up their weaknesses? How can we shape the

environment to support them in the most functional way? How can we minimize

extraneous stressors so their energy can be focused on the task at hand? And

so on.

I do not know if any of this is useful to you - I just sense that things are

very rough right now and I hurt to think of being blamed by others as

if whatever the issue is, is simply a choice to be made by .

Kim

> Hi Kim,

> I just wanted to know anything about it. My daughter's psych talked to us

> about it in conversation. It may be something we use with her in the future.

> Right now we are doing a lot of talking and I am seeing a downward spiral in

> my daughter and I am falling to pieces. So, I'm not really sure what I need

> to know.

>

> Sorry to be so vague. I am overwhelmed and it has been a long time since I

> was in this place. I have a high functioning child and thought I was over a

> lot. Little did I know....

>

> Colleen

>

>

[Guest guest]

Going back to something simple for a sec.

I had a small group of girls, about 5 years older than , who I hired to

'babysit' her, take her to the mall, to the movies, out for pizza, or just to

hang out. I'd leave, whether I needed to go out or not. loved

hanging out with them. She didn't think about the fact that they were being

paid.

(and the money helped the girls to stay motivated in patience.) Obviously

there was no peer pressure.

She could get away with being occassionally demanding, but fortunately was

much more motivated to do what they were doing, act like they were acting, etc.

Di loved it.

I think it helped her alot. It provided a model. We started at Aubrie's

age.

We parents of adults have been discussing whether independent living

situations with other CHARGE children is a good idea. It certainly simplifies

the

aspect of " support personnel " ,

but going back to " form and function " , and modeling (patterning) I don't

think its beneficial.

in Ma.

Mom to , 20 yrs old (CHARGE), 22 yrs. and partner to Alan (12

years now)

[Guest guest]

Colleen-

Just a cyber hug to say " I hear ya " . Even when our kids are " high

functioning " or " mild CHARGE " , the issues can be huge and difficult. When

the medical issues seem under control, and we get communication going, we

are not out of the woods. We'll all find the answers together. Hang in

there.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

cognitive behaviour therapy

Hi Kim,

I just wanted to know anything about it. My daughter's psych talked to us

about it in conversation. It may be something we use with her in the

future. Right now we are doing a lot of talking and I am seeing a downward

spiral in my daughter and I am falling to pieces. So, I'm not really sure

what I need to know.

Sorry to be so vague. I am overwhelmed and it has been a long time since I

was in this place. I have a high functioning child and thought I was over a

lot. Little did I know....

Colleen

[Guest guest]

Colleen-

Kim said it! " how can we enhance their

strengths, while we build up their weaknesses? How can we shape the

environment to support them in the most functional way? How can we minimize

extraneous stressors so their energy can be focused on the task at hand? And

so on. " This was my understanding after our consult with the dr. I feel

validated that we are seeing Aubrie clearly, we are assessing the situation

clearly, but we don't know how to address it. In the meantime, we can at

least take comfort in the fact that it's not anything we are doing nor is it

anything she can control. The problems are coming from within her at a

level beyond her control. So for now, we can support her as best we can

while respecting and understanding that she has stresses we and she can't

eliminate. For example, when she is at the end of her rope with whatever,

we know that pushing won't help. We know we need to be comforting and

supportive as she gets herself together. And we can do that without blame

towards her for getting to that state or towards us for not stopping it or

fixing it. If we see it coming, we can do small things to help prevent it

-- like allowing her to compose herself with rocking, humming, whatever. We

know she has the skills to get herself together. Someday, we'd like to help

her find other ways to cope before she gets to that level.

In my marital counseling with DJ, we are doing CBT. As Kim said, it does

have value and can be very helpful. But I don't know that our girls are to

a point where it can help. The local neuropsych tried an approach that I

think fits with CBT. We labeled the topics that Aubrie gets stuck on as

" yellow topics " so we could talk about them with her. She has the cognitive

understanding that she needs to save those yellow topics for outside the

classroom etc. But even when she understands, she can't stop herself.

That's very different from me understanding that I have misplaced anger and

then thinking it through and changing my reaction. I can do that because my

issue comes from a way of thinking not from something as deep as Aubrie's

need to obsess. It would be like someone with clinical depression being

taught to change their thinking to positive. At that level of depression,

no amount of thinking and wanting to change can make it happen. After

medication to help with the chemical basis of depression, then the person

can work to change their thoughts. I think CBT can be helpful for our girls

because they have the communication and understanding to participate in

it... but it has to be later on down the road when we have the issues to a

point when they have some control. Right now, they have little or no

control over these things.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Michele,

I am crying as I read this. How you describe how the understanding

alleviates the blame so that you can get to the place of enhancing her

function - that is my passion totally! Helping people " grasp " that

understanding so they can enhance the child's function rather than blame

(although subtly) the child, parent, teacher, self or whoever is what drives

my desire to understand at a deeper level. I feel it is the " answer " to all

the questions we ask here, learning, social, communication, toileting,

sleep, obsessions.... I feel it is all linked and I am so happy that you

have found someone to help you find solutions about what you already know

about your daughter. As parents we don't need the tests to tell us the

problem, we need the tests so other people can understand what she has

control of and what she doesn't. The problem is once we give people the

report - they don't necessarily " buy into it " and continue to push or demand

more than the child is capable of giving. My passion is to help people

understand the reports or recommendations at their own gut level so they

then adapt their behavior in a way that enhances Aubrie's function without

even knowing that they are doing it!

And on your 2nd paragraph - again so very well said. The trick is using CBT

as they are capable, but being careful to not " blame " then if that is not

enough.

Kim

> Colleen-

> Kim said it! " how can we enhance their

> strengths, while we build up their weaknesses? How can we shape the

> environment to support them in the most functional way? How can we minimize

> extraneous stressors so their energy can be focused on the task at hand? And

> so on. " This was my understanding after our consult with the dr. I feel

> validated that we are seeing Aubrie clearly, we are assessing the situation

> clearly, but we don't know how to address it. In the meantime, we can at

> least take comfort in the fact that it's not anything we are doing nor is it

> anything she can control. The problems are coming from within her at a

> level beyond her control. So for now, we can support her as best we can

> while respecting and understanding that she has stresses we and she can't

> eliminate. For example, when she is at the end of her rope with whatever,

> we know that pushing won't help. We know we need to be comforting and

> supportive as she gets herself together. And we can do that without blame

> towards her for getting to that state or towards us for not stopping it or

> fixing it. If we see it coming, we can do small things to help prevent it

> -- like allowing her to compose herself with rocking, humming, whatever. We

> know she has the skills to get herself together. Someday, we'd like to help

> her find other ways to cope before she gets to that level.

>

> In my marital counseling with DJ, we are doing CBT. As Kim said, it does

> have value and can be very helpful. But I don't know that our girls are to

> a point where it can help. The local neuropsych tried an approach that I

> think fits with CBT. We labeled the topics that Aubrie gets stuck on as

> " yellow topics " so we could talk about them with her. She has the cognitive

> understanding that she needs to save those yellow topics for outside the

> classroom etc. But even when she understands, she can't stop herself.

> That's very different from me understanding that I have misplaced anger and

> then thinking it through and changing my reaction. I can do that because my

> issue comes from a way of thinking not from something as deep as Aubrie's

> need to obsess. It would be like someone with clinical depression being

> taught to change their thinking to positive. At that level of depression,

> no amount of thinking and wanting to change can make it happen. After

> medication to help with the chemical basis of depression, then the person

> can work to change their thoughts. I think CBT can be helpful for our girls

> because they have the communication and understanding to participate in

> it... but it has to be later on down the road when we have the issues to a

> point when they have some control. Right now, they have little or no

> control over these things.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Kim-

You are perfectly equipped to bring that gut-level understanding. You are

gifted in bringing the knowledge to a level that regular people can get. So

keep learning and reaching out. You are making a difference for all of us

here and for all those you work with. These realizations are huge for me in

helping Aubrie become all she can be. Without the understanding, she'd have

no where to go. At our support group meeting last night, other parents were

talking about their kids with autism and similar disorders. I think often

even parents don't really get it. You have to step outside of yourself and

let go of your own guilt and ownership to truly understand a child --

especially a child who is so outside of our natural realm of understanding.

I'm rambling... enough...

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

I'm with you on this one. But I do struggle back and forth. We're still at

the point of thinking of it in terms of education. I absolutely believe

that Aubrie needs to stay in the regular classroom. However, I can see the

benefit of a smaller class size, individual instruction time, etc in the

spec ed classroom. But she simply has to maintain the relationships with

her typical peers. They are what drives her to achieve more -- like night

time pottying etc. I also think she needs to have other people with

disabilities in her life. Don't we all want friends who really get it? We

all have friends who are other parents of kids with disabilities. We all

have women friends who get that. We all have married friends who get that.

If we are diabetic, we enjoy knowing someone else who is diabetic and gets

that. But I wouldn't want to live in a world of only married females with

diabetes! I know Aubrie gets comfort in the camaraderie of knowing others

like her, but that doesn't mean she's best of with only having that in her

life.

My mom and I were debating the issue of community living v. group homes,

institutions, etc. Most people --even parents -- will think that a group

home where the " kids " go to the movies every Fri is so great. Gosh, they

get out in the community, they go to movies, how great is that, right? But

then think about living independently and going to the movies any night you

want, to any movie you choose, with any friends you choose -- and some of

those friends may not even have disabilities! Now that's independence and

freedom and that's what I want for Aubrie. Off of your topic a bit, but

it's on my brain so it fit in with my thought circle...

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

I'm with you on this one. But I do struggle back and forth. We're still at

the point of thinking of it in terms of education. I absolutely believe

that Aubrie needs to stay in the regular classroom. However, I can see the

benefit of a smaller class size, individual instruction time, etc in the

spec ed classroom. But she simply has to maintain the relationships with

her typical peers. They are what drives her to achieve more -- like night

time pottying etc. I also think she needs to have other people with

disabilities in her life. Don't we all want friends who really get it? We

all have friends who are other parents of kids with disabilities. We all

have women friends who get that. We all have married friends who get that.

If we are diabetic, we enjoy knowing someone else who is diabetic and gets

that. But I wouldn't want to live in a world of only married females with

diabetes! I know Aubrie gets comfort in the camaraderie of knowing others

like her, but that doesn't mean she's best of with only having that in her

life.

My mom and I were debating the issue of community living v. group homes,

institutions, etc. Most people --even parents -- will think that a group

home where the " kids " go to the movies every Fri is so great. Gosh, they

get out in the community, they go to movies, how great is that, right? But

then think about living independently and going to the movies any night you

want, to any movie you choose, with any friends you choose -- and some of

those friends may not even have disabilities! Now that's independence and

freedom and that's what I want for Aubrie. Off of your topic a bit, but

it's on my brain so it fit in with my thought circle...

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

I'm with you on this one. But I do struggle back and forth. We're still at

the point of thinking of it in terms of education. I absolutely believe

that Aubrie needs to stay in the regular classroom. However, I can see the

benefit of a smaller class size, individual instruction time, etc in the

spec ed classroom. But she simply has to maintain the relationships with

her typical peers. They are what drives her to achieve more -- like night

time pottying etc. I also think she needs to have other people with

disabilities in her life. Don't we all want friends who really get it? We

all have friends who are other parents of kids with disabilities. We all

have women friends who get that. We all have married friends who get that.

If we are diabetic, we enjoy knowing someone else who is diabetic and gets

that. But I wouldn't want to live in a world of only married females with

diabetes! I know Aubrie gets comfort in the camaraderie of knowing others

like her, but that doesn't mean she's best of with only having that in her

life.

My mom and I were debating the issue of community living v. group homes,

institutions, etc. Most people --even parents -- will think that a group

home where the " kids " go to the movies every Fri is so great. Gosh, they

get out in the community, they go to movies, how great is that, right? But

then think about living independently and going to the movies any night you

want, to any movie you choose, with any friends you choose -- and some of

those friends may not even have disabilities! Now that's independence and

freedom and that's what I want for Aubrie. Off of your topic a bit, but

it's on my brain so it fit in with my thought circle...

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Michele,

You are so right on the independence part! It is what Roy and I spent our

time dreaming about at Blacksmith Canyon last weekend, not so much the

place, but the opportunities for Dylan. Going to a mall for social time

with your house staff and housemates and not being in relationship with

anyone else at the mall, and not having choice about if you even like to go

to the mall is not social in my opinion.

Kim

> I'm with you on this one. But I do struggle back and forth. We're still at

> the point of thinking of it in terms of education. I absolutely believe

> that Aubrie needs to stay in the regular classroom. However, I can see the

> benefit of a smaller class size, individual instruction time, etc in the

> spec ed classroom. But she simply has to maintain the relationships with

> her typical peers. They are what drives her to achieve more -- like night

> time pottying etc. I also think she needs to have other people with

> disabilities in her life. Don't we all want friends who really get it? We

> all have friends who are other parents of kids with disabilities. We all

> have women friends who get that. We all have married friends who get that.

> If we are diabetic, we enjoy knowing someone else who is diabetic and gets

> that. But I wouldn't want to live in a world of only married females with

> diabetes! I know Aubrie gets comfort in the camaraderie of knowing others

> like her, but that doesn't mean she's best of with only having that in her

> life.

>

> My mom and I were debating the issue of community living v. group homes,

> institutions, etc. Most people --even parents -- will think that a group

> home where the " kids " go to the movies every Fri is so great. Gosh, they

> get out in the community, they go to movies, how great is that, right? But

> then think about living independently and going to the movies any night you

> want, to any movie you choose, with any friends you choose -- and some of

> those friends may not even have disabilities! Now that's independence and

> freedom and that's what I want for Aubrie. Off of your topic a bit, but

> it's on my brain so it fit in with my thought circle...

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Michele,

You are so right on the independence part! It is what Roy and I spent our

time dreaming about at Blacksmith Canyon last weekend, not so much the

place, but the opportunities for Dylan. Going to a mall for social time

with your house staff and housemates and not being in relationship with

anyone else at the mall, and not having choice about if you even like to go

to the mall is not social in my opinion.

Kim

> I'm with you on this one. But I do struggle back and forth. We're still at

> the point of thinking of it in terms of education. I absolutely believe

> that Aubrie needs to stay in the regular classroom. However, I can see the

> benefit of a smaller class size, individual instruction time, etc in the

> spec ed classroom. But she simply has to maintain the relationships with

> her typical peers. They are what drives her to achieve more -- like night

> time pottying etc. I also think she needs to have other people with

> disabilities in her life. Don't we all want friends who really get it? We

> all have friends who are other parents of kids with disabilities. We all

> have women friends who get that. We all have married friends who get that.

> If we are diabetic, we enjoy knowing someone else who is diabetic and gets

> that. But I wouldn't want to live in a world of only married females with

> diabetes! I know Aubrie gets comfort in the camaraderie of knowing others

> like her, but that doesn't mean she's best of with only having that in her

> life.

>

> My mom and I were debating the issue of community living v. group homes,

> institutions, etc. Most people --even parents -- will think that a group

> home where the " kids " go to the movies every Fri is so great. Gosh, they

> get out in the community, they go to movies, how great is that, right? But

> then think about living independently and going to the movies any night you

> want, to any movie you choose, with any friends you choose -- and some of

> those friends may not even have disabilities! Now that's independence and

> freedom and that's what I want for Aubrie. Off of your topic a bit, but

> it's on my brain so it fit in with my thought circle...

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Michele,

You are so right on the independence part! It is what Roy and I spent our

time dreaming about at Blacksmith Canyon last weekend, not so much the

place, but the opportunities for Dylan. Going to a mall for social time

with your house staff and housemates and not being in relationship with

anyone else at the mall, and not having choice about if you even like to go

to the mall is not social in my opinion.

Kim

> I'm with you on this one. But I do struggle back and forth. We're still at

> the point of thinking of it in terms of education. I absolutely believe

> that Aubrie needs to stay in the regular classroom. However, I can see the

> benefit of a smaller class size, individual instruction time, etc in the

> spec ed classroom. But she simply has to maintain the relationships with

> her typical peers. They are what drives her to achieve more -- like night

> time pottying etc. I also think she needs to have other people with

> disabilities in her life. Don't we all want friends who really get it? We

> all have friends who are other parents of kids with disabilities. We all

> have women friends who get that. We all have married friends who get that.

> If we are diabetic, we enjoy knowing someone else who is diabetic and gets

> that. But I wouldn't want to live in a world of only married females with

> diabetes! I know Aubrie gets comfort in the camaraderie of knowing others

> like her, but that doesn't mean she's best of with only having that in her

> life.

>

> My mom and I were debating the issue of community living v. group homes,

> institutions, etc. Most people --even parents -- will think that a group

> home where the " kids " go to the movies every Fri is so great. Gosh, they

> get out in the community, they go to movies, how great is that, right? But

> then think about living independently and going to the movies any night you

> want, to any movie you choose, with any friends you choose -- and some of

> those friends may not even have disabilities! Now that's independence and

> freedom and that's what I want for Aubrie. Off of your topic a bit, but

> it's on my brain so it fit in with my thought circle...

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Yes. It is fascinating to me to be in these discussions with all of my new

work colleagues. We are fighting against a whole world of folks who are

invested in things as they are done now -- the administrators of the group

homes, CILAs, etc, the union workers there, the parents of the people living

there... all of them need to believe that what they are doing is the best

thing. And it may have been the best option once. It may be doing some

good for some people. It's certainly better than some alternatives. But

there is so much more. I think of it as when we first had IDEA and parents

were just thankful their kids were in the school. Nevermind if they were

really getting an education. Now we are just thankful people are in the

community -- nevermind if it's got any real meaning or value. I have a real

problem when people think a situation is good enough because the person with

disabilities doesn't know any different. You know, if they're happy going

on Fridays with a set group to a prechosen movie, then isn't that great?

Why give them more options if they don't know the difference? How humane is

that? Now-- I don't mean to open a whole kettle of fish. I'm not saying

all group homes etc need to be closed. I just want to see greater options

available. In IL, funds are only available if you live in an institutional

setting - those funds are not available to support you if you choose to live

at home (whether it's your own home or a family member's home). Just as in

school we need the whole spectrum from full inclusion to residential schools

for the deaf, we need the full spectrum of living options for adults from

full dependency to full independency. I am just beginning on this trek so I

apologize in advance in I've said anything to offend anyone. My opinions

and understandings are still forming.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Yes. It is fascinating to me to be in these discussions with all of my new

work colleagues. We are fighting against a whole world of folks who are

invested in things as they are done now -- the administrators of the group

homes, CILAs, etc, the union workers there, the parents of the people living

there... all of them need to believe that what they are doing is the best

thing. And it may have been the best option once. It may be doing some

good for some people. It's certainly better than some alternatives. But

there is so much more. I think of it as when we first had IDEA and parents

were just thankful their kids were in the school. Nevermind if they were

really getting an education. Now we are just thankful people are in the

community -- nevermind if it's got any real meaning or value. I have a real

problem when people think a situation is good enough because the person with

disabilities doesn't know any different. You know, if they're happy going

on Fridays with a set group to a prechosen movie, then isn't that great?

Why give them more options if they don't know the difference? How humane is

that? Now-- I don't mean to open a whole kettle of fish. I'm not saying

all group homes etc need to be closed. I just want to see greater options

available. In IL, funds are only available if you live in an institutional

setting - those funds are not available to support you if you choose to live

at home (whether it's your own home or a family member's home). Just as in

school we need the whole spectrum from full inclusion to residential schools

for the deaf, we need the full spectrum of living options for adults from

full dependency to full independency. I am just beginning on this trek so I

apologize in advance in I've said anything to offend anyone. My opinions

and understandings are still forming.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Yes. It is fascinating to me to be in these discussions with all of my new

work colleagues. We are fighting against a whole world of folks who are

invested in things as they are done now -- the administrators of the group

homes, CILAs, etc, the union workers there, the parents of the people living

there... all of them need to believe that what they are doing is the best

thing. And it may have been the best option once. It may be doing some

good for some people. It's certainly better than some alternatives. But

there is so much more. I think of it as when we first had IDEA and parents

were just thankful their kids were in the school. Nevermind if they were

really getting an education. Now we are just thankful people are in the

community -- nevermind if it's got any real meaning or value. I have a real

problem when people think a situation is good enough because the person with

disabilities doesn't know any different. You know, if they're happy going

on Fridays with a set group to a prechosen movie, then isn't that great?

Why give them more options if they don't know the difference? How humane is

that? Now-- I don't mean to open a whole kettle of fish. I'm not saying

all group homes etc need to be closed. I just want to see greater options

available. In IL, funds are only available if you live in an institutional

setting - those funds are not available to support you if you choose to live

at home (whether it's your own home or a family member's home). Just as in

school we need the whole spectrum from full inclusion to residential schools

for the deaf, we need the full spectrum of living options for adults from

full dependency to full independency. I am just beginning on this trek so I

apologize in advance in I've said anything to offend anyone. My opinions

and understandings are still forming.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Colleen,

I work part-time as a mental helath counselor and as such use a fair amount

of cognitive behavioral therapy with clients. Kim and summed it up

great and I agree that unless has a fairly high level of communication

skills and you feel like her behavior is within her control, it may not be

helpful. Play therapy is another form of counseling done by therapists who work

with

kids and this may be more helpful. I missed your original post so I'm not sure

what your current needs are. My husband is actually a play therapist and

could answer questions about that if you like. Our son, Bryce has his share of

behavioral issues but I'm convinced they are neuroligical in origin and not

something that would be helped AT THIS POINT by cognitive behavioral therapy. I

do

hope he will mature to a place of being able to recognize his own behavioral

and neurological challenges and be able to think through how to help himself

but I see that as pretty far down the road. (He will be 9 next week, but

developmentally is about 7.) We try to concentrate more on the things that will

help

him neurologically like Handle, sleep, and daily exercise.

Just 2 cents from a CBT therapist...which is really a fancy word for

counselor.

Deedee Ungetheim

[Guest guest]

micherlle no one rambles to muvch in here LOL

>

> Colleen,

> I work part-time as a mental helath counselor and as such use a fair

> amount

> of cognitive behavioral therapy with clients. Kim and summed it

> up

> great and I agree that unless has a fairly high level of

> communication

> skills and you feel like her behavior is within her control, it may not be

> helpful. Play therapy is another form of counseling done by therapists who

> work with

> kids and this may be more helpful. I missed your original post so I'm not

> sure

> what your current needs are. My husband is actually a play therapist and

> could answer questions about that if you like. Our son, Bryce has his

> share of

> behavioral issues but I'm convinced they are neuroligical in origin and

> not

> something that would be helped AT THIS POINT by cognitive behavioral

> therapy. I do

> hope he will mature to a place of being able to recognize his own

> behavioral

> and neurological challenges and be able to think through how to help

> himself

> but I see that as pretty far down the road. (He will be 9 next week, but

> developmentally is about 7.) We try to concentrate more on the things that

> will help

> him neurologically like Handle, sleep, and daily exercise.

> Just 2 cents from a CBT therapist...which is really a fancy word for

> counselor.

>

> Deedee Ungetheim

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

micherlle no one rambles to muvch in here LOL

>

> Colleen,

> I work part-time as a mental helath counselor and as such use a fair

> amount

> of cognitive behavioral therapy with clients. Kim and summed it

> up

> great and I agree that unless has a fairly high level of

> communication

> skills and you feel like her behavior is within her control, it may not be

> helpful. Play therapy is another form of counseling done by therapists who

> work with

> kids and this may be more helpful. I missed your original post so I'm not

> sure

> what your current needs are. My husband is actually a play therapist and

> could answer questions about that if you like. Our son, Bryce has his

> share of

> behavioral issues but I'm convinced they are neuroligical in origin and

> not

> something that would be helped AT THIS POINT by cognitive behavioral

> therapy. I do

> hope he will mature to a place of being able to recognize his own

> behavioral

> and neurological challenges and be able to think through how to help

> himself

> but I see that as pretty far down the road. (He will be 9 next week, but

> developmentally is about 7.) We try to concentrate more on the things that

> will help

> him neurologically like Handle, sleep, and daily exercise.

> Just 2 cents from a CBT therapist...which is really a fancy word for

> counselor.

>

> Deedee Ungetheim

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

micherlle no one rambles to muvch in here LOL

>

> Colleen,

> I work part-time as a mental helath counselor and as such use a fair

> amount

> of cognitive behavioral therapy with clients. Kim and summed it

> up

> great and I agree that unless has a fairly high level of

> communication

> skills and you feel like her behavior is within her control, it may not be

> helpful. Play therapy is another form of counseling done by therapists who

> work with

> kids and this may be more helpful. I missed your original post so I'm not

> sure

> what your current needs are. My husband is actually a play therapist and

> could answer questions about that if you like. Our son, Bryce has his

> share of

> behavioral issues but I'm convinced they are neuroligical in origin and

> not

> something that would be helped AT THIS POINT by cognitive behavioral

> therapy. I do

> hope he will mature to a place of being able to recognize his own

> behavioral

> and neurological challenges and be able to think through how to help

> himself

> but I see that as pretty far down the road. (He will be 9 next week, but

> developmentally is about 7.) We try to concentrate more on the things that

> will help

> him neurologically like Handle, sleep, and daily exercise.

> Just 2 cents from a CBT therapist...which is really a fancy word for

> counselor.

>

> Deedee Ungetheim

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Kim and all,

Although I am hundreds of messages behind, I am so reluctant to

unsubscribe again, as I learn so much from you...the parents and also

young adults with CHARGE...

Thanks to you all for your enormous inspiration to hang in there and

continue to learn as much as possible...

Sharon from West Oz

>Kim-

>You are perfectly equipped to bring that gut-level understanding. You are

>gifted in bringing the knowledge to a level that regular people can get. So

>keep learning and reaching out. You are making a difference for all of us

>here and for all those you work with. These realizations are huge for me in

>helping Aubrie become all she can be. Without the understanding, she'd have

>no where to go. At our support group meeting last night, other parents were

>talking about their kids with autism and similar disorders. I think often

>even parents don't really get it. You have to step outside of yourself and

>let go of your own guilt and ownership to truly understand a child --

>especially a child who is so outside of our natural realm of understanding.

>I'm rambling... enough...

>

>Michele W

>mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

>CHARGE SYNDROME LISTSERV PHOTO PAGE:

>http://www.imagestation.com/album/?id=2117043995

>

>Membership of this email support groups does not constitute

>membership in the CHARGE Syndrome Foundation or CHARGE Syndrome

>Canada.

>For information about the CHARGE Syndrome

>Foundation or to become a member (and get the newsletter),

>please contact marion@... or visit

>the web site at http://www.chargesyndrome.org

>(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

>8th International

>CHARGE Syndrome Conference, July, 2007. Information will be

>available at www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Kim and all,

Although I am hundreds of messages behind, I am so reluctant to

unsubscribe again, as I learn so much from you...the parents and also

young adults with CHARGE...

Thanks to you all for your enormous inspiration to hang in there and

continue to learn as much as possible...

Sharon from West Oz

>Kim-

>You are perfectly equipped to bring that gut-level understanding. You are

>gifted in bringing the knowledge to a level that regular people can get. So

>keep learning and reaching out. You are making a difference for all of us

>here and for all those you work with. These realizations are huge for me in

>helping Aubrie become all she can be. Without the understanding, she'd have

>no where to go. At our support group meeting last night, other parents were

>talking about their kids with autism and similar disorders. I think often

>even parents don't really get it. You have to step outside of yourself and

>let go of your own guilt and ownership to truly understand a child --

>especially a child who is so outside of our natural realm of understanding.

>I'm rambling... enough...

>

>Michele W

>mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

>CHARGE SYNDROME LISTSERV PHOTO PAGE:

>http://www.imagestation.com/album/?id=2117043995

>

>Membership of this email support groups does not constitute

>membership in the CHARGE Syndrome Foundation or CHARGE Syndrome

>Canada.

>For information about the CHARGE Syndrome

>Foundation or to become a member (and get the newsletter),

>please contact marion@... or visit

>the web site at http://www.chargesyndrome.org

>(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

>8th International

>CHARGE Syndrome Conference, July, 2007. Information will be

>available at www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Kim and all,

Although I am hundreds of messages behind, I am so reluctant to

unsubscribe again, as I learn so much from you...the parents and also

young adults with CHARGE...

Thanks to you all for your enormous inspiration to hang in there and

continue to learn as much as possible...

Sharon from West Oz

>Kim-

>You are perfectly equipped to bring that gut-level understanding. You are

>gifted in bringing the knowledge to a level that regular people can get. So

>keep learning and reaching out. You are making a difference for all of us

>here and for all those you work with. These realizations are huge for me in

>helping Aubrie become all she can be. Without the understanding, she'd have

>no where to go. At our support group meeting last night, other parents were

>talking about their kids with autism and similar disorders. I think often

>even parents don't really get it. You have to step outside of yourself and

>let go of your own guilt and ownership to truly understand a child --

>especially a child who is so outside of our natural realm of understanding.

>I'm rambling... enough...

>

>Michele W

>mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

>CHARGE SYNDROME LISTSERV PHOTO PAGE:

>http://www.imagestation.com/album/?id=2117043995

>

>Membership of this email support groups does not constitute

>membership in the CHARGE Syndrome Foundation or CHARGE Syndrome

>Canada.

>For information about the CHARGE Syndrome

>Foundation or to become a member (and get the newsletter),

>please contact marion@... or visit

>the web site at http://www.chargesyndrome.org

>(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

>8th International

>CHARGE Syndrome Conference, July, 2007. Information will be

>available at www.chargesyndrome.org or by calling 1-.

>