Re: Thank you all so much!

February 21, 2006

Were is this place? In the Mall? Those lights are bright (possible sensitivity) and hot-heat is a known trigger for seizures. If it's in the Mall the crowds will FREAK them out. Especially when they are not tall enough to see over people. And to top it off he probably was wearing something "NICE" that has starch in it. So there is another messed up sensory thing? Poor baby! lol It is extremely hard for an Autistic Spectrum child to look ANYBODY in the eyes. There are a few idea's about this but I honestly don't think any of them are worth a pile of beans. I have heard vit A is good for this but as with everything else- what works for one autistic child, won't with another (EVEN identical twins like mine!) Is it a long ride or do you pass something that could be upsetting to him? Have you tried offering him a reward? My kids love Mc's. Tell him if he doesn't have a meltdown you can stop at McD's on the way home. Its

worth a try? Best of luck, Deb C summerrain02790 <summerrain02790@...> wrote: Thank you for all your posts. I feel relieved that I can go somewhere and talk about this. It has been so hard the last nine years thinking that it was just me... I am going to talk with his doctor for another referal. I just hate to put my son through more testing. It was difficult the first time around. I really didn't want to tell him what it was for because he would think that he was strange and different. He does tend to take things to heart and dwell on them. And he wouldn't have the understanding at this moment, oh, I could tell him all the technical sides of it and he could repeat it all but he wouldn't get it. I do have a question, do your children cry and have a melt down when forced to

look at people they are not comfortable with?Yesterday, I went to get their pictures taken. Not an easy task when you have four kids. Well, Cody has a difficult time smiling when asked too. Its very stiff and more like a frown. And the lady very nicely had to keep redirecting him to look at her and he just couldn't. He started to cry and said i can't smile, i can't smile, i can't smile. I had to take him out because he was so upset. As long as it is quick, he can handle getting his picture taken but in a group photo he has a major melt down... Anyone else?Thanks, Tiara Deb C.

February 21, 2006

Hi Tiara,

>Well, Cody has a difficult time smiling when

> asked too. Its very stiff and more like a frown. And the lady very

> nicely had to keep redirecting him to look at her and he just

> couldn't. He started to cry and said i can't smile, i can't smile, i

> can't smile.

My son can't smile to order either (and he's 18 now). I think it's not being

able to relate to showing an emotion which he isn't feeling at the time, and

not knowing which muscles to use.

So it's one of those things which you learn not to make a fuss about. You

know he's doing his best and that should be more than good enough.

in England

February 21, 2006

Rowell wrote:

> Hi Tiara,

>

>> Well, Cody has a difficult time smiling when asked too. Its very

>> stiff and more like a frown. And the lady very nicely had to keep

>> redirecting him to look at her and he just couldn't. He started to

>> cry and said i can't smile, i can't smile, i can't smile.

>

Louie's never been able to " smile on command, " and he turns 26 next

week. In fact, the only way we've ever been able to get him to smile is

to sing the Meyer bologna song! He thinks it's hilarious...it's

the pause with the drawn out note before the last line that gets him.

But photogs tend to look at ya funny when you sing that to a man, so

we let Louie look however he wants to in a photo. And generally, unless

we catch him in a candid moment, he doesn't smile for pictures.

What's the big deal with serious photos? I mean, geeze! Next time,

just let the photog know that your son prefers not to smile.

Annie, who loves ya annie@...

--

“Ever since I can remember, I’ve had memories.”--Colin Mochre

February 21, 2006

Most photos of my son show him either frowning or with a big " fake " grin.

My father-in-law is a very keen photographer who insists on getting the

photo perfect - no matter how long it takes. He soon gave up on Ben, but

not before he had gotten very frustrated with him for not smiling or staying

still.

Riley

-------Original Message-------

From: Rowell

Date: 02/21/06 20:31:24

Hi Tiara,

>Well, Cody has a difficult time smiling when

> asked too. Its very stiff and more like a frown. And the lady very

> nicely had to keep redirecting him to look at her and he just

> couldn't. He started to cry and said i can't smile, i can't smile, i

> can't smile.

My son can't smile to order either (and he's 18 now). I think it's not being

able to relate to showing an emotion which he isn't feeling at the time, and

not knowing which muscles to use.

So it's one of those things which you learn not to make a fuss about. You

know he's doing his best and that should be more than good enough.

in England

February 22, 2006

has a hard smiling also, always looks like he has a gun stuck in his back. That is why I'm going to take his graduation photos, that way I can take few now and some later and take the time to get posedthe way I want. Mike McPeekAnnie <annie@...> wrote: Rowell wrote: > Hi Tiara, > >> Well, Cody has a difficult time smiling when asked too. Its very >> stiff and more like a frown. And the lady very nicely had to keep >>

redirecting him to look at her and he just couldn't. He started to >> cry and said i can't smile, i can't smile, i can't smile. >Louie's never been able to "smile on command," and he turns 26 nextweek. In fact, the only way we've ever been able to get him to smile is to sing the Meyer bologna song! He thinks it's hilarious...it's the pause with the drawn out note before the last line that gets him. But photogs tend to look at ya funny when you sing that to a man, so we let Louie look however he wants to in a photo. And generally, unless we catch him in a candid moment, he doesn't smile for pictures.What's the big deal with serious photos? I mean, geeze! Next time, just let the photog know that your son prefers not to smile. :)Annie, who loves ya annie@...-- “Ever since I can remember, I’ve had memories.”--Colin Mochre

March 25, 2008

Isabella- My love, thoughts and prayers are with you my friend.Dont

you worry about posting to us girl- you better be resting while you

can before going back home to those lil fellows of yours.lol Just

let Astrid be your avid poster till you get home.

Many hugs-Tonia

>

> Dear all,

>

> Thank you all so very very very much! The messages I received

these last few days and weeks on and off the board really are

overwhelming!

>

> I am so overwhelmed by the love and support I get from you all and

I cannot put into words how good it feels. I am honestly touched by

the sweet words I read.

>

> As I get so many posts now, it is not possible to answer them

personally, but please everyone, regard this post as a personal post

to you, telling you how gratefull I am.

>

> Many of you have asked me to keep you posted on my surgery and

progress. Unfortunately my husband isn't into languages (we are from

Holland so we speak Dutch), neither is he into computers...

>

> But Astrid will stay in touch with Romeo by phone and she will

post my updates here on the board.

>

> The hospital does have an internet cafe free for use by patients,

so I was thinking about how to get there, this as my dear sweet

Romeo refuses to bring me there (well, can't blame him, he will

drive to hospital every day for 1,5h and back again for 1,5h

wouldn't be worth it if I'm sitting behind a computer while he's

visiting me, eh?). But...... I found out that the ward I am on has

volunteers to do such things... So, as soon as I am up to it you bet

I'll be posting here on the board myself!

>

> Today was my last working day before going in. Tomorrow is

screening day. At the moment I really feel so strong, positive and

confident! I am counting the days now...

>

> Thanks again!

>

> Love,

> Isabella

>

_____________________________________________________________________

_______________

> Never miss a thing. Make your home page.

> http://www./r/hs

>

March 2, 2009

Hi Christi, your post gave me goose bumps, I am very glad you are happy with

everyone, we all do our best. Thanks for the post, blessings, Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's

Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

From: cfroncz <cfroncz@...>

Subject: [ ] Thank you all so much!

Date: Sunday, March 1, 2009, 7:44 PM

I had never used a message board until last week. I sent in a

message

concerning my brother and his new CML diagnosis at the age of 34. I

would never have imagined that you all would have welcomed me as you

did, shared so much information, and given me such amazing feedback!

I have literally been smiling since the first response I received. I

have shared this group with my brother and he is going to join. Along

with him, my mother is also overwhelmed by your kindness and concern.

She will also be here to share and learn and vent and celebrate this

community and the bond you all share. Thank you so much Lottie,

Bobby, Zavie, Aloha Sharon, China, Terry, and all of you who shared.

You have honestly made my heart lighter and you have impacted my

entire family. You have given us faith and made us feel that we do

have somewhere to go, my brother does have others to share with and

who understand. I will be keeping in touch. And you will see us on

here soon. I keep you all in my prayers. God Bless. Christi

March 2, 2009

Hi Christi: I am so glad you found our group to be supportive and caring.

Thats what its all about. Your brother should find a lot of help as well as

Faith that everything is going to be fine. You can get on there whenever you

feel like you need a friend. There is always a answer with in a few hours

depending on time of day. God Bless all of You

Suzzie 10 year survivor

From: cfroncz <cfroncz@...>

Subject: [ ] Thank you all so much!

Date: Sunday, March 1, 2009, 7:44 PM

I had never used a message board until last week. I sent in a message