Re: Parental stress during treatmment

August 10, 2006

Ellen,

I feel for you, my son when he gets stressed and in public places will say

things over and over and tap on me over and over and it absolutely gets to

every last nerve. Its like his whole behavior is not him and he does things

that no one else would do. When we went to Disney, my son loved it, but

really struggled with the crowds, open spaces, etc. For 7 days total, he

would bang his head on my arm, and say “burpee, burpee” over and over. I had

bruises all over my arms and in total tears by the end of the week. It was

like nothing I ever felt and my nerve system was at its peak. Nothing I did

would make it go away either. I was with friends and they kept saying “can’t

you do something about that?” Nothing I tried to do to get him to stop would

work. It was so hard because I was dealing with two issue, 1) the banging

and repeated noises but 2) the public humiliation and feelings of failure

that I couldn’t control it. I just wanted both of us to get out of the

situation as fast as we could and hide in the safetly of our home.

My second thought is I hear you say she is like failing, can the people

there help you figure this out? For me I am constantly feeling like I have

to protect myself and my son from public humiliations. I am constantly

stressed as to what to do to try and make him more “normal with others”.

When we started going to the psych I found myself doing that with him also

until I stopped and realized I don’t need to hide these weird behaviors but

pray he shows them the worse with the doctor so maybe he can figure it out.

I hope that the doctors there are understanding your grief and will come up

with some solutions.

No you are not a wimp, you are going through some major stuff with the hope

of help, fear that it isn’t working, shame of daughters behavior not being

like the other kids, etc. Hang in there and hope these doctors can help

teach you both how to handle stresses.

DP

_____

From:

[mailto: ] On Behalf Of musicgirl9395

Sent: Thursday, August 10, 2006 1:44 AM

Subject: Parental stress during treatmment

Hi,

The 3rd day at wasn't as good as the second. But I am still

hoping she will get with the system. She isn't doing all that she is

suppose to be doing yet. I am not sure why. Maybe it is her ADD, or

maybe it is just avoidance of the whole thing. SHe is scared, I

know. I come home from the program, so emotionally exhausted. The

program is 3 hours and it is a long drive each way. In the car, she

swears at me and taps me a lot. It is pretty awful. Does that sound

stressful? I am wondering if I am just a wimp. Tomorrow we are

meeting with a doctor there. I do feel well taken care of there.

Even a nurse came up to me today and she knew all about my daughter

already. I hope my daughter starts doing what she is suppose to do,

and I hope I can adjust to the routine. I definitely need to take

some time for myself. Just felt like venting. Thanks for

listening. Ellen

August 10, 2006

we are heading to Disney next Fri - asked doc for a note - disney

allows special accomodations such as waiting in a separate place - not

skipping lines etc but could be very helpful - OCD is running rampid

right now and I'm trying a 10 day antibiotic due to high titers always

- trying not to do any exposure etc to see if she's truly a PANDAS kid

but letting it run wild is really scary - but I won't know till I try -

we had done a bit of exposure the other night and I really hate it but

the affects are great and quick too - didn't feel it during though

but of course then I realized this whole antibiotic thing and feel bad

I made her fight one night and then now I'm doing nothing to see if

this works?? -I hate the confusion - matter of fact - I HATE OCD!

Eileen :-)

Quoting Adele Mahan <adelem@...>:

> Ellen,

>

> I feel for you, my son when he gets stressed and in public places will say

> things over and over and tap on me over and over and it absolutely gets to

> every last nerve. Its like his whole behavior is not him and he does things

> that no one else would do. When we went to Disney, my son loved it, but

> really struggled with the crowds, open spaces, etc. For 7 days total, he

> would bang his head on my arm, and say “burpee, burpee” over and over. I had

> bruises all over my arms and in total tears by the end of the week. It was

> like nothing I ever felt and my nerve system was at its peak. Nothing I did

> would make it go away either. I was with friends and they kept saying “can’t

> you do something about that?” Nothing I tried to do to get him to stop would

> work. It was so hard because I was dealing with two issue, 1) the banging

> and repeated noises but 2) the public humiliation and feelings of failure

> that I couldn’t control it. I just wanted both of us to get out of the

> situation as fast as we could and hide in the safetly of our home.

>

> My second thought is I hear you say she is like failing, can the people

> there help you figure this out? For me I am constantly feeling like I have

> to protect myself and my son from public humiliations. I am constantly

> stressed as to what to do to try and make him more “normal with others”.

> When we started going to the psych I found myself doing that with him also

> until I stopped and realized I don’t need to hide these weird behaviors but

> pray he shows them the worse with the doctor so maybe he can figure it out.

> I hope that the doctors there are understanding your grief and will come up

> with some solutions.

>

> No you are not a wimp, you are going through some major stuff with the hope

> of help, fear that it isn’t working, shame of daughters behavior not being

> like the other kids, etc. Hang in there and hope these doctors can help

> teach you both how to handle stresses.

>

> DP

>

> _____

>

> From:

> [mailto: ] On Behalf Of musicgirl9395

> Sent: Thursday, August 10, 2006 1:44 AM

>

> Subject: Parental stress during treatmment

>

> Hi,

> The 3rd day at wasn't as good as the second. But I am still

> hoping she will get with the system. She isn't doing all that she is

> suppose to be doing yet. I am not sure why. Maybe it is her ADD, or

> maybe it is just avoidance of the whole thing. SHe is scared, I

> know. I come home from the program, so emotionally exhausted. The

> program is 3 hours and it is a long drive each way. In the car, she

> swears at me and taps me a lot. It is pretty awful. Does that sound

> stressful? I am wondering if I am just a wimp. Tomorrow we are

> meeting with a doctor there. I do feel well taken care of there.

> Even a nurse came up to me today and she knew all about my daughter

> already. I hope my daughter starts doing what she is suppose to do,

> and I hope I can adjust to the routine. I definitely need to take

> some time for myself. Just felt like venting. Thanks for

> listening. Ellen

>

August 10, 2006

In a message dated 8/10/2006 11:28:14 A.M. Eastern Standard Time,

autumn71A@... writes:

disney

allows special accomodations such as waiting in a separate place - not

skipping lines

Eileen

Disney also offers 'reservations' for rides (not sure if it's all rides, or

just the big ones), but that might help you out a few times at least. You

can go in advance to, say, Haunted Mansion & get a reservation ticket for a

specific time to go on the ride - then you go do other things, come back at

your

specified time and just basically walk right on the ride - or the wait is

only a few people in front of you while the regular line could be an hour or

longer wait.

This is something they started after the last time I was at any Disney

park.... but my friends go all the time & say this feature is great. Like I

said,

at least it might help a few times. You can only use it on one ride at a

time though.

Have fun.... we're going for 4 days in August as well.

LT

August 10, 2006

Stress, yes, so much stress. I often think it is worse around friends than

strangers. I hate being embarrassed. I think if he were in a wheelchair would I

be embarrassed? One friend often comments, " sounds like he is trying to get

attention " . It's like she hasn't heard me the last 5 months talk about a real

diagnosis and everything we have gone through. She is also worried her daughter

will " catch it " because she is seeing him act that way and might imitate him to

" get attention " . Yes, her kids are attention seeking, they need to be. She also

asked that I tell him not to talk about his OCD with her daughter for the same

reason. Needless to say, we are not around them often anymore. I think people

just don't understand. Strangers stare when he has meltdowns in the store and

I've heard comments like " someone needs a good spanking " . I was upset and turned

and said " what did you say? " in a crazed, hysterical voice. It stopped my son's

meltdown and freaked the guy out a little, hey, two birds one stone. I just try

and remain calm, and then freak out later in private with a good cry.

J

Parental stress during treatmment