Re: Re: behaviors in CHARGE

[Guest guest]

,

I am sorry that you had such a hard day. I am sometimes fearful of the

same things for my daughter Katelyn. She also has some bad outbursts when

she doesn't get things her way. I try to always have a plan B for all long

waits. I hate the reaction of others. I hate when it happens when my

husband is there,because he doesn't handle it well. I am still hopeful that

she will start to sign to me more and that the communication barrier will be

broken and her frustration will decrease. She will be 11 on Friday. I

cannot believe that I have survived this long!?

Hang in there. I understand.

Re: Re: behaviors in CHARGE

> Hello,

> I have a WHOLE new twist on behavior. My son Mark will be 18 this

> month and when he acts out it is real scary for me now. He is as big as I

am

> and stronger. We had a Dr's appointment today at 8am we had to wait an

hour.

> I literally just PRAYED that he wouldn't act up. Usually my husband goes

with

> me but we are running out of vacation days for this kind of stuff. It is

VERY

> STRESSFUL. He made it through the appointment ok. Then I was concerned he

> would get upset if we went right to school instead of the USUAL Mcs

> after a Dr appointment. (HE knows basic signing) I pulled in the drive

> through and he got upset hitting his head and pointing for me to get back

on

> the road. I did, because I was so frustrated. He did fine going into

school.

> I had signed earlier that we would get Mcs after school so I am

hoping

> he is thinking that and will be GOOD all day. His bus ride now is much

longer

> too. I tell you it NEVER ENDS!! We have begun the guardianship papers and

all

> that UGH, I'm tired,

>

>

>

[Guest guest]

<P> ,

<P>I can relate. Kim gets to go to Krystal after Dr.

appts. Last week however we were running out of time

and it was only 9:30 am so I told her we would go

after we both got out of school. Luckily that made her

happy and I had no problems getting her to go into

school. Behaviors usually aren't bad until I say no to

Krystal, Taco Bell, etc. Then all you now what breaks

lose. Take care.

<P>Lydia mom to chrgr Kim 15, Alia 15, 17,

20

<P> & nbsp;

<P> & nbsp; <B><I>joe stevermer

& lt;jts@... & gt;</I></B> wrote:

<BLOCKQUOTE style= " BORDER-LEFT: #1010ff 2px solid;

MARGIN-LEFT: 5px; PADDING-LEFT:

5px " ><TT>,<BR> & nbsp; I am sorry that you had such

a hard day. & nbsp; I am sometimes fearful of

the<BR>same things for my daughter Katelyn. & nbsp; She

also has some bad outbursts when<BR>she doesn't get

things her way. & nbsp; I & nbsp; try to always have a

plan B for all long<BR>waits. & nbsp; I hate the

reaction of others. & nbsp; I hate when it happens when

my<BR>husband is there,because he doesn't handle it

well. & nbsp; I am still hopeful that<BR>she will start

to sign to me more and that the communication barrier

will be<BR>broken and her frustration will

decrease. & nbsp; She will be 11 on Friday. & nbsp;

I<BR>cannot believe that I have survived this

long!?<BR>Hang in there. & nbsp; I

understand.<BR><BR> Re:

Re: behaviors in CHARGE<BR><BR><BR> & gt;

Hello,<BR> & gt; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;

I have a WHOLE new twist on behavior. My son Mark will

be 18 this<BR> & gt; month and when he acts out it is

real scary for me now. He is as big as I<BR>am<BR> & gt;

and stronger. We had a Dr's appointment today at 8am

we had to wait an<BR>hour.<BR> & gt; I literally just

PRAYED that he wouldn't act up. Usually my husband

goes<BR>with<BR> & gt; me but we are running out of

vacation days for this kind of stuff. It

is<BR>VERY<BR> & gt; STRESSFUL. He made it through the

appointment ok. Then I was concerned he<BR> & gt; would

get upset if we went right to school instead of the

USUAL Mcs<BR> & gt; after a Dr appointment. (HE

knows basic signing) I pulled in the drive<BR> & gt;

through and he got upset hitting his head and pointing

for me to get back<BR>on<BR> & gt; the road. I did,

because I was so frustrated. He did fine going

into<BR>school.<BR> & gt; I had signed earlier that we

would get Mcs after school so I

am<BR>hoping<BR> & gt; he is thinking that and will be

GOOD all day. His bus ride now is

much<BR>longer<BR> & gt; too. I tell you it NEVER ENDS!!

We have begun the guardianship papers

and<BR>all<BR> & gt; that UGH, I'm

tired, & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;

<BR> & gt;<BR> & gt;<BR> & gt; [Non-text portions of

this message have been

removed]<BR> & gt;<BR> & gt;<BR> & gt;<BR> & gt; Membership of

this email support groups does not constitute

membership in<BR>the CHARGE Syndrome

Foundation.<BR> & gt; For information about the CHARGE

Syndrome<BR> & gt; Foundation or to become a member (and

get the newsletter)<BR> & gt; please contact

marion@... or visit<BR> & gt; the CHARGE

Syndrome Foundation web page<BR> & gt; at <A

href= " http://www.chargesyndrome.org/ " >http://www.chargesyndrome.org</A><BR> & gt;

6th International CHARGE Syndrome Conference,

Cleveland, Ohio,<BR> & gt; July 25-27, 2003. Information

will be available at our website<BR> & gt;

www.chargesyndrome.org or by calling

1-.<BR> & gt;<BR> & gt;<BR> & gt; Your use of

Yahoo! Groups is subject to <A

href= " http://docs.yahoo.com/info/terms/ " >http://docs.yahoo.com/info/terms/</A><B\

R> & gt;<BR><BR></TT><BR><!--

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marion@... or visit <BR>the CHARGE

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href= " http://www.chargesyndrome.org/ " >http://www.chargesyndrome.org</A><BR>6th

International CHARGE Syndrome Conference, Cleveland,

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