Re: behaviors

December 16, 2005

Dear Debbie,

Wow- was just a peanut when she went thru her tantrums. She never

lashed out at me-but I swear I think she blamed me back then for what she was

going thru-of course, I was the closest to her, so the natural target, but also

it was always me taking her for all those painful procedures, holding her

down, etc. She used to call me Mother Towne-it just came out of the blue one

day, and she wanted to go live with the nurses, or the neighbors, anybody

else!-a real confidence booster for me-talk about a guilt trip. did not

test anywhere near that high on her IQ tests, but learning about how she

learns (info she takes in via seeing much more valuable than that recvd by

hearing), small classrooms-3 kids max. and repeat,repeat,repeat.and now Perkins

school feels she is intellectually capable of attending a 4 yr college. I just

think it would be too much for her as a " total person " taking all of her into

consideration. is quietly rebellious. Once when she was about 4-and

ignoring me totally, I put her in her crib for time-out. As I turned to peek in

the door, I saw her standing up at the end of the bed, kinda crying, and

heard her say " Oh God.........NOW what am I going to do " That's my girl-always

relying on herself, whether thats good or bad at any given moment.

You have a very valid concern, that is getting older and bigger, and

hanging on to these old response patterns-he sounds more like my son, ,

who is 2 yrs older than Di.

Dave found pot and other drugs in Jr. High. By high school he was smoking

pot every day,and I believe dabbling in other things. He was the one who was

violent, and refused to comply. That went on for all 4 yrs. of H.S having to

have the police here-him breaking things-putting holes in walls.stealing from

me-on and on. Somehow, his frontal lobes managed to develop in spite of the

drugs, at least to the point that he is not violent any longer. But U couldn't

pay me to go back to that, It was hell.and very little worked. mind you-in

between those bouts of insanity, Dave is a loving, considerate person. He

just really lost it when his father moved out when he was 10. ah well, I'd say

U must find something to break 's response mode. I was never able to

get any Dr. to put Dave on any drugs until he stopped using marijuana, and

refused to stop.. and he would not see Dr. Glaser..

So, on to Ur question. Dr. Glaser is an M.D. he is an internist, and has

also studied pediatric medicine. (I could look up his credentials). He has

always had Hospital affiliations, and a private practice. What makes him

different, is that he practices transcendental meditation as well.. The

simplest way to learn about that is to pick up a copy of one of Dr. Deepak

Chopra's

books. He also learned TM from maharishi mahesh yogi-the guy the Beatles

hung out with in the early 70's. He also has a web site-I'll find it for you.

TM teaches that through a simple process of sitting quietly for 20 minutes

in the morning and 20 minutes at night with a mantra (a word with no meaning) U

can quiet the mind to greater and greater periods of silence, and that when

we bring the mind to more silence, our intent becomes stronger, stress is

reduced, that body,mind, and spirit benefit from the experience of silence, and

that instead of operating on the surface of life, we go deeper into

ourselves, and closer to the source of ourselves. We experience more joy, life

becomes more effortless, we live more in tune with Nature, and the natural

order

of the universe, which, in turn, reflects itself into and through our own

lives. My personal experience says that this is true. My personal downfall is

that I am very self-willed. I found my whole experience with meditation to

be a revelation-to be peaceful and joyful. I believe that improved in

the manner I reported because Dr. Glaser's countenance is immersed in this

silence-is in tune with the same organization of nature that keeps the stars

and

the planets traveling in order

and furthermore that if the natural order works out there, it will work for

me too. Then there is a really neat thing called synchronicity, which Dr.

Chopra explains.U'll know if it seems right to U. If it does, I can tell U how

to persue it. Dr. Chopra left the organization that Maharishi established

and started his clinic in San Diego with Dr. Simington, with author Wayne(?)

Dwyer and others-but U would not have to go to San Diego to see someone, or to

learn more.None of these doctors suggest suspending regular medical

treatment. It just never came up the day I took to see him, and it

turned out

to be not necessary for that particular problem.

I also have seen other parents talking about risperdal. (could be

respiradal) U might want to ask them, and a doctor about that particular

medication,

and if it will help . Believe me, U are not making any mistakes-there

is no right or wrong absolute. U tried somethings that could have worked,

moved on to others if they didn't. That's being a great mother-and don't U

forget

it. Peace, for .

December 16, 2005

-

I am so intrigued with your experiences. When I have time to mull it over,

visit some websites, etc, I may have more questions for you. Part of it has

to do with CHARGE, but I also have a 14-yr-old son who shuns all of the

alternative stuff that I try. With the teen years on the horizon, your

experiences with both of your kids may be helpful. So much of what you said

is profound and wonderful. Thanks for joining in and sharing on this topic.

Have you read " A Million Little Pieces " ? If not, I think you'd appreciate

it. It's a man's story of addiction and rehab. He finds truth that speaks

to him in the Tao (I think that's the right one...). I'm not quite done

with the book yet, but so far it is fascinating. I'd like my son to read it

if it just didn't have so many adult words and topics in it. But then, if

teens are to be protected from making adult choices too soon, do we need to

give them more adult info?? I don't know - that's one of my current

struggles.

Michele W

December 17, 2005

have you got the dalai lams book the art of happiness mums got the one your

reading shes got lots of books on this sort of xstuff shes very interested

init hugs ellen

>

> -

> I am so intrigued with your experiences. When I have time to mull it

> over,

> visit some websites, etc, I may have more questions for you. Part of it

> has

> to do with CHARGE, but I also have a 14-yr-old son who shuns all of the

> alternative stuff that I try. With the teen years on the horizon, your

> experiences with both of your kids may be helpful. So much of what you

> said

> is profound and wonderful. Thanks for joining in and sharing on this

> topic.

>

> Have you read " A Million Little Pieces " ? If not, I think you'd appreciate

> it. It's a man's story of addiction and rehab. He finds truth that

> speaks

> to him in the Tao (I think that's the right one...). I'm not quite done

> with the book yet, but so far it is fascinating. I'd like my son to read

> it

> if it just didn't have so many adult words and topics in it. But then, if

> teens are to be protected from making adult choices too soon, do we need

> to

> give them more adult info?? I don't know - that's one of my current

> struggles.

>

> Michele W

>

> 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 - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

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

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

>

December 17, 2005

Ellen -

Thanks for the tip. I'll add it to my reading list!

Michele W

Re: behaviors

have you got the dalai lams book the art of happiness mums got the one your

reading shes got lots of books on this sort of xstuff shes very interested

init hugs ellen

December 17, 2005

Michele, you've raised a very important point. , after enduring all

of our legal battles over endless years for 's education, one day

exploded. She yelled that I was (then) in my 40's, but she was only in her

teens. I was old enough to learn that people lied, that school officials

couldn't be trusted, but she said that she shouldn't have learned the

lesson at her age. She was oh so correct --- and to my horror, I just hadn't

realized her angst.

I think we have to watch very closely what we put our kids through. I

remember when we were told that would die before she was 6

months old (ha!), one of the hardest things I did was to get Andy,

, and me to our U's psych center. Andy was talking and talking,

E. was sitting on the floor --- and something made one of the psychs ask

A. if he didn't think E. heard what he was saying ---- and this about a man

who is usually TOTALLY in tune with his older daughter. I learned then

that I had to be careful - to be honest but also to shield just a bit.

Unfortunately, I think this realization came too late to spare E.

unnecessary pain. If I'm way off topic, I apologize. It's been a long day,

and we get tomorrow. Martha

December 17, 2005

Martha-

Interesting to think about how all of this effects all of our kids - the

ones with CHARGE and the siblings. Both get a healthy dose of reality way

too soon. One gets way too much attention than is healthy. The other

doesn't get enough attention. There is so little we can do to minimize the

effects. We certainly can't eliminate them. I sometimes ache for

when I think of how his life has changed since his sister's birth. It would

have been so different without CHARGE. Not necessarily better, cuz who

knows for sure, but different...

Good luck with . Is this coming home for good now or will she be

returning to her current residence after the holiday?

Michele W

December 18, 2005

Michele and Martha,

This whole sibling thing is always on my mind. Elly is only 3 but I do

wonder about the effects on her of having a sister with CHARGE. I know for

sure she has experienced way more than her peers have as a result. Some of

it is good (eg growing up bilingual can only be good), some I do wonder

about. I wonder how many 3 year olds have witnessed their sister being held

down to have medical examinations? As much as we try to avoid this, the

attempts to balance out their not feeling left out and being involved can

sometimes be a fine line. With all the best will in the

world, involving the two in joint activities on an equal basis is so hard

and one inevitably ends up getting the lion's share of

attention. Although Elly is currently very good at getting attention

(positive or negative), I also know that she is also too good at playing on

her own. I wrestle with this constantly and hope to one day find a balance

(am I being delusional here)? We are using a variety of strategies to try

to redress the balance but they are no substitute for shared and equal

attention. And then of course there is the sibling relationship. Oh my

God, I don't even want to go into the neurosis this induces im me!

Can't even remember what touched me to start responding to this thread as I

am way too tired after too many CHARGE induced sleepless nights so will just

share for now that I am right there with you guys.

Flo

December 18, 2005

A note of reassurance.

I agree that Tyler and Kayla's lives are different, because of Dylan, but

from my vantage point I think the positives far outweigh the disadvantages.

Kayla is a typical middle, but she is between two brothers each with their

own special needs. But she is the most easy-going, helpful, cooperative

person around. As much as she demanded less time, it was easier to make her

feel special and loved without being coddled. The self-determined, like to

learn new things, and be competent certainly helped. It has also helped

that as she enters high school, we have let her know that it is her turn,

and when making family decisions (where there is choice involved) that her

needs come out on top. I guess my reassurance is that the amount of time

and type of interaction that each child needs is different in all families,

and it all works out in the end.

I do think it would be harder with just Tyler and Dylan.

Kim

> Michele and Martha,

> This whole sibling thing is always on my mind. Elly is only 3 but I do

> wonder about the effects on her of having a sister with CHARGE. I know for

> sure she has experienced way more than her peers have as a result. Some of

> it is good (eg growing up bilingual can only be good), some I do wonder

> about. I wonder how many 3 year olds have witnessed their sister being held

> down to have medical examinations? As much as we try to avoid this, the

> attempts to balance out their not feeling left out and being involved can

> sometimes be a fine line. With all the best will in the

> world, involving the two in joint activities on an equal basis is so hard

> and one inevitably ends up getting the lion's share of

> attention. Although Elly is currently very good at getting attention

> (positive or negative), I also know that she is also too good at playing on

> her own. I wrestle with this constantly and hope to one day find a balance

> (am I being delusional here)? We are using a variety of strategies to try

> to redress the balance but they are no substitute for shared and equal

> attention. And then of course there is the sibling relationship. Oh my

> God, I don't even want to go into the neurosis this induces im me!

>

> Can't even remember what touched me to start responding to this thread as I

> am way too tired after too many CHARGE induced sleepless nights so will just

> share for now that I am right there with you guys.

>

> Flo

>

December 18, 2005

Kim,

Bless you and I am duly reassured. Sally Prouty has very effectively

reassured me in the past but guess we all go through our cycles of guilt and

temporarily forget what those before us have wisely said. Guess the

" Christmas card factory " in our house has got the better of me as Elly has

been independently " staffing " her own production line while has

needed lots of help and guidance (only one example). Have also been

obsessing with Elly's need/ urge to look after as need and want her

to just be 's sister but may not be taking into account her own need

to help her sister out etc. It's not as if does nothing for her!

She (Elly) tries so hard sometimes I really feel for her, but I suppose I

forget that she is also very competitive with and that these

represent " normal " sibling relationships, ridden with contradictions. How

quickly we forget!

Gees, for a mental health practitioner, I can really exercise my neurotic

side! If my clients only knew what goes on in my mind they would die

laughing!

Flo

>

> A note of reassurance.

>

> I agree that Tyler and Kayla's lives are different, because of Dylan, but

> from my vantage point I think the positives far outweigh the

> disadvantages.

>

> Kayla is a typical middle, but she is between two brothers each with their

> own special needs. But she is the most easy-going, helpful, cooperative

> person around. As much as she demanded less time, it was easier to make

> her

> feel special and loved without being coddled. The self-determined, like

> to

> learn new things, and be competent certainly helped. It has also helped

> that as she enters high school, we have let her know that it is her turn,

> and when making family decisions (where there is choice involved) that her

> needs come out on top. I guess my reassurance is that the amount of time

> and type of interaction that each child needs is different in all

> families,

> and it all works out in the end.

>

> I do think it would be harder with just Tyler and Dylan.

>

> Kim

>

December 18, 2005

my mums bros a physc nurse and he can subject peopel and we often joke round

with tim that he can do grandpa or us or soemone lol if he was to do you now

hed find a very crazy mum but a normal charge mum infact he might find you

exactly like my mum ellen

>

> Kim,

> Bless you and I am duly reassured. Sally Prouty has very effectively

> reassured me in the past but guess we all go through our cycles of guilt

> and

> temporarily forget what those before us have wisely said. Guess the

> " Christmas card factory " in our house has got the better of me as Elly has

> been independently " staffing " her own production line while has

> needed lots of help and guidance (only one example). Have also been

> obsessing with Elly's need/ urge to look after as need and want

> her

> to just be 's sister but may not be taking into account her own

> need

> to help her sister out etc. It's not as if does nothing for her!

> She (Elly) tries so hard sometimes I really feel for her, but I suppose I

> forget that she is also very competitive with and that these

> represent " normal " sibling relationships, ridden with contradictions. How

> quickly we forget!

>

> Gees, for a mental health practitioner, I can really exercise my neurotic

> side! If my clients only knew what goes on in my mind they would die

> laughing!

>

> Flo

>

> >

> > A note of reassurance.

> >

> > I agree that Tyler and Kayla's lives are different, because of Dylan,

> but

> > from my vantage point I think the positives far outweigh the

> > disadvantages.

> >

> > Kayla is a typical middle, but she is between two brothers each with

> their

> > own special needs. But she is the most easy-going, helpful, cooperative

> > person around. As much as she demanded less time, it was easier to make

> > her

> > feel special and loved without being coddled. The self-determined, like

> > to

> > learn new things, and be competent certainly helped. It has also helped

> > that as she enters high school, we have let her know that it is her

> turn,

> > and when making family decisions (where there is choice involved) that

> her

> > needs come out on top. I guess my reassurance is that the amount of

> time

> > and type of interaction that each child needs is different in all

> > families,

> > and it all works out in the end.

> >

> > I do think it would be harder with just Tyler and Dylan.

> >

> > Kim

> >

>

December 18, 2005

Flo,

And as a mental health practitioner, you know some of it is just their

personalities. Maybe Elly is fine being independent and simply needs the

attention of noticing how amazed you are at her doing it herself, while

does need more assistance.

I know my older 2 kids are definitely " parentified " and have relationships

with Dylan that in many ways are more like parent/child than child/child,

because they do caregiving for him, much more than they would otherwise; and

they look on him as a parent would - as the smartest and brightest and

cutest and so on; and they rough house and do movement play with him and

tolerated him directing them when he was that age and they fit in his

" routine " as objects to be moved around rather than playmates; Tyler even

lets him in his room to play his drums. BUT, they do not play as other

brothers and sisters do, because Dylan has not been capable before, and when

they try he did not reciprocate, so it made it hard as children for them to

see why to keep trying. (shoot even at times, I felt trying to get him to

reciprocate was pointless, and I was the most consistent of all of us).

They have figured out their own ways to play that are meaningful to Dylan

and to them. Kayla is far more interactive with Dylan, she is far more

capable of thinking of someone besides herself than Tyler ever was until

just very recently. Kayla has also been my right hand as babysitter since

she was 10. (I paid her as a real job if I was working and she did it as

just being part of the family if I just wanted to do errands alone) Through

middle school, I was very careful to always pay and let her know how much I

appreciated it, and let her feel like she had some choice on if she had to

or not. Now she is in high school, I am even more conscious of her need for

her own social life and time.

On the bad side, they do know that having Dylan did impact our ability to do

things as a family. They know that without him we would have done far more

camping, dirt biking, fishing and things like that which would have been so

good for Tyler in particular. Going over to the neighbors for a barbecue

was hard, and going out of town was exhausting to say the least during the

" autistic-like " years. We hated to split up the family and tried to find

things we could all do. We found that it actually worked better to split

the family sometimes and to do things all together other times.

I think it really does come down to their personalities, your routines and

lifestyle, and what curves life throws at any given time.

From everything I have heard, I think it sounds like you are doing a

fabulous job with your girls.

Kim

> Kim,

> Bless you and I am duly reassured. Sally Prouty has very effectively

> reassured me in the past but guess we all go through our cycles of guilt and

> temporarily forget what those before us have wisely said. Guess the

> " Christmas card factory " in our house has got the better of me as Elly has

> been independently " staffing " her own production line while has

> needed lots of help and guidance (only one example). Have also been

> obsessing with Elly's need/ urge to look after as need and want her

> to just be 's sister but may not be taking into account her own need

> to help her sister out etc. It's not as if does nothing for her!

> She (Elly) tries so hard sometimes I really feel for her, but I suppose I

> forget that she is also very competitive with and that these

> represent " normal " sibling relationships, ridden with contradictions. How

> quickly we forget!

>

> Gees, for a mental health practitioner, I can really exercise my neurotic

> side! If my clients only knew what goes on in my mind they would die

> laughing!

>

> Flo

>

>>

>> A note of reassurance.

>>

>> I agree that Tyler and Kayla's lives are different, because of Dylan, but

>> from my vantage point I think the positives far outweigh the

>> disadvantages.

>>

>> Kayla is a typical middle, but she is between two brothers each with their

>> own special needs. But she is the most easy-going, helpful, cooperative

>> person around. As much as she demanded less time, it was easier to make

>> her

>> feel special and loved without being coddled. The self-determined, like

>> to

>> learn new things, and be competent certainly helped. It has also helped

>> that as she enters high school, we have let her know that it is her turn,

>> and when making family decisions (where there is choice involved) that her

>> needs come out on top. I guess my reassurance is that the amount of time

>> and type of interaction that each child needs is different in all

>> families,

>> and it all works out in the end.

>>

>> I do think it would be harder with just Tyler and Dylan.

>>

>> Kim

>>

>

December 18, 2005

Yes Ellen your mom does sound very special, I would love to meet her one day.

It was wonderful to meet Chip's mom and talk to her in Miami. He was one of the

first adults with CHARGE I ever spoke to, he used to write me letters (the old

fashioned kind to be sent in the mail) and send me pictures. What an

inspiration!

Flo Njeru wrote:

Ellen,

" Crazy mum, normal CHARGE mum " . That just about sums me up I guess. Glad

to be normal in one respect, honoured to be like your mum totally. She

sounds like a great mum from your accounts.

Flo

>

> my mums bros a physc nurse and he can subject peopel and we often joke

> round

> with tim that he can do grandpa or us or soemone lol if he was to do you

> now

> hed find a very crazy mum but a normal charge mum infact he might find you

> exactly like my mum ellen

>

> >

> > Kim,

> > Bless you and I am duly reassured. Sally Prouty has very effectively

> > reassured me in the past but guess we all go through our cycles of guilt

> > and

> > temporarily forget what those before us have wisely said. Guess the

> > " Christmas card factory " in our house has got the better of me as Elly

> has

> > been independently " staffing " her own production line while has

> > needed lots of help and guidance (only one example). Have also been

> > obsessing with Elly's need/ urge to look after as need and want

> > her

> > to just be 's sister but may not be taking into account her own

> > need

> > to help her sister out etc. It's not as if does nothing for

> her!

> > She (Elly) tries so hard sometimes I really feel for her, but I suppose

> I

> > forget that she is also very competitive with and that these

> > represent " normal " sibling relationships, ridden with

> contradictions. How

> > quickly we forget!

> >

> > Gees, for a mental health practitioner, I can really exercise my

> neurotic

> > side! If my clients only knew what goes on in my mind they would die

> > laughing!

> >

> > Flo

> >

> > >

> > > A note of reassurance.

> > >

> > > I agree that Tyler and Kayla's lives are different, because of Dylan,

> > but

> > > from my vantage point I think the positives far outweigh the

> > > disadvantages.

> > >

> > > Kayla is a typical middle, but she is between two brothers each with

> > their

> > > own special needs. But she is the most easy-going, helpful,

> cooperative

> > > person around. As much as she demanded less time, it was easier to

> make

> > > her

> > > feel special and loved without being coddled. The self-determined,

> like

> > > to

> > > learn new things, and be competent certainly helped. It has also

> helped

> > > that as she enters high school, we have let her know that it is her

> > turn,

> > > and when making family decisions (where there is choice involved) that

> > her

> > > needs come out on top. I guess my reassurance is that the amount of

> > time

> > > and type of interaction that each child needs is different in all

> > > families,

> > > and it all works out in the end.

> > >

> > > I do think it would be harder with just Tyler and Dylan.

> > >

> > > Kim

> > >

> >

December 19, 2005

Martha,

I am glad you mentioned that. I speak very honestly about Tyler having CHARGE.

His siblings are younger and is very protective and " mothering " to him at

times, but I like your wording of " shielding. " It just brings to mind

saying, " Tyler can't help it because he has CHARGE. " Is she too young at 6 to

understand stuffing your mouth inappropriately is bad social grace (we have been

working on that for years)? I have never said that he can't help the stuffing,

but I have said it is difficult--she has figured out it is due to him having

CHARGE. I think I am okay on that one, but there is great wisdom in shielding.

Thanks for your input.

Kristy

RE: behaviors