Re: Re: Today I saw something that made me sad...THERE HAS TO BE A CURE

[Guest guest]

, I am the same way. My 5 year old son, who is my world, is my big trigger. He has a stuffy nose, and sniffs and smacks constantly. I hate getting so mad at him. I leave the room and he follows me. My daughter is 3 and she doesn't bother me nearly as much even though she makes most of the same sounds. I can only guess it's because she is younger.

My husband doesn't have what I would classify as 4S, but he does get irritated by similar sounds as me. He has the ability to ignore them most of the time, but when he's really irritable they can get him a little angry. I'm lucky for thast because he understands how I feel to a point. I hate crunching around him even when he says it's fine, but I hate the thought of him hearing my "mouth noises."

Right now I am chewing gum super grossly. I'm popping and snapping it. Why the heck doesn't this bother me??? If somene else was doing it I would want to kill them. So WEIRD!!

I (sort of) know a reporter for The Wall Street Journal. She interviewed me for a piece on fussy babies. She does storieI will email her and tell her about 4S

To: Soundsensitivity Sent: Thu, November 25, 2010 11:31:29 AMSubject: Re: Re: Today I saw something that made me sad...THERE HAS TO BE A CURE

I agree totally! My 7 year old daughter has become a major trigger for me now. I hate it sooooo much. She is my little sweetheart and I don't want to feel any anger towards her. I wonder if there are any prominent people out there that have this. Someone that has major influence on other people. I want help desperately without being made fun of. Is it in our brains? Our ears? Both? We have to find a way for everyone to recognize this problem. Here's to overhead fans on the stove! Happy Thanksgiving everyone!!

To: Soundsensitivity Sent: Thu, November 25, 2010 10:05:42 AMSubject: Re: Today I saw something that made me sad...THERE HAS TO BE A CURE

Reading everyone's post to this topic just gets me so frustrated...Sometimes I get down and accept that there is no cure for this, which is very depressing! There must be a cure!!! We just have to figure it out.... We need to bring attention of this to researchers...I think most of you are from the States (I saw reference to Thanksgiving being today, for us it's in October), but if all of us, from all different countries try to bring this to attention - it will have to start being researched! It's so terrible, so mysterious..how can people NOT be researching it??? We need to bring attention to it, to remove the shame of sufferers, and to start on our way to a solution!> >> > Kay,> > > > I'm so sorry today was tough for you. There have been many days where I just > > wanted to lock myself in a room and cry. 4S is like riding a roller > > coaster...one minute things seem to be normal &  the next it's right back to > > the same old same old. We, like Kathy have recently started making > > accommodations for my little one & it really seems to be helping.  I'm > > learning very quickly don't take it personal and keep the mood light. Tonight > > for example, on a 30 minute ride from my mom's house, just my 4S little one & I, > > I began feeling very nasally and knew I'd better do something quick, because it > > seems that one minor infraction will set off a 4S snow ball! I turned

up her > > favorite hip hop music really loud and to make it more fun, decided I'd dance > > and sing too. Well that didn't go over very well, as my singing apparently set > > her off. She began yelling, "you stupid retard, you shouldn't sing unless > > you're a professional singer." Another trick I'm learning is lighten the mood > > or in other words divert her attention. I began telling her this elaborate > > story about how I really was a professional singer...within seconds I had her > > giggling and back to her normal self. That particular ride was saved, but I > > know there will be many more issues to make it through, but through the grace of > > God and this wonderful group of supportive people, I'll make it through it! > > > > > > > > Keep your head up and know

that you have lots of 4S friends and you are always > > welcome to vent...I think if we didn't have a safe group of people to vent to > > we'd probably bust or just flat out give up. > > > > > > Happy Thanksgiving,> > > >    > > > > > > > > > > > > ________________________________> > From: Kathy Howe <k.howe@>> > To: Soundsensitivity > > Sent: Wed, November 24, 2010 6:45:49 PM> > Subject: RE: Today I saw something that made me sad...THERE > > HAS TO BE A CURE> > > >  > > Kay,> >  > > You sound just like

me. I would look at families doing stuff like eat in a > > restaurant, so happily and care free, and I would get so depressed. I just > > wanted so badly to be normal again!! Thankfully, my daughter has gotten better > > and is able to eat with us again. We turn on the fan over the stove and turn > > the TV on for background noise. We use soft plastic plates, never clanky plates > > that silverware can hit. We stay away from a lot of crunchy foods, and never > > put ice in a glass. If we do, we use straws. She is much better in restaurants > > also. So don't give up, things can get better.> >  > > However, we could never eat in the car with her, which makes for difficult long > > road trips.> >  > > WE NEED RESEARCH!! I know that there are

answers out there. Keep praying, I > > know I am.> >  > > Kathy> >  > > Today I saw something that made me sad...THERE HAS > > >TO BE A CURE> >

>> > >Â > > >It was so simple. I stopped in to Mc's to pick up breakfast on my way to> > >work.> > >There was a family eating there. They were obviously traveling, on there way> > >somewhere for Thanksgiving.> > >> > >It was a Mom, Dad, Daughter and Son. The son looked like a younger version of> > >my son, braces included :-)) They were eating and laughing and talking.> > >> > >I suddenly became overwhelmed with sadness. And it is because we can NEVER do> > >that as a family. My son has not been able to eat with us for almost 4 years,> > >thanks to his 4S. He doesn't even remember being able to eat with us. (He was> > >9 when it became too painful) Then I wonder if he will be able to eat with his> > >own family when he is grown......> > >>

> >I know there are many things that could be much worse but 4S really affects the> > >whole family and it hurts us all. I miss us all being together for dinner.> > >> > >THERE HAS TO BE A CURE !!!!> > >> > >Sorry for the downer, this is the only place I can come that understands why> > >this hurts like it does. I just needed a place to vent and feel like I was> > >among understanding friends.> > >> > >Thanks> > >Kay> > >> > >> >>