Re: Help!

[Guest guest]

veggietater89, I'm sorry you are struggling but please know you are

not alone. I also have a hard time with some family members

understanding my 4S. I've decided that some people will just never

get it. You said that you aren't the type of person to spill your

guts to family or friends. Is that because you don't think they will

listen or for fear that they won't care? I know what that is like.

However, if you don't normally spill your guts, maybe if you do they

will realize something is really wrong? Are you currently seeing a

doctor for this? If not, you may want to try that route. If you can

get a medical professional to back you up it could help. I would

suggest you go out on a limb and sit down with your family and really

have a heart to heart with them. Show them this website and tell

them how it makes you feel. Try to compare how hearing a trigger for

you is like something they hate multiplied by 10! Ask them to please

help you with this. I hope things will work out with you... all you

can do is try right? I don't have anyone to talk to about this

either except my mom but she's a thousand miles away. Just remember

we are all here for you even if your family and friends aren't. Stay

strong!

>

> I don't know if this is the sort of thing you can post on here, but

I'm feeling very down and its

> mainly 4s's fault. I don't have anyone to talk to about it because

its just not serious to them

> and I'm not the type of person to spill my guts to friends or

family. Its created many more

> problems for me and I don't know what to do anymore How can I

make my family take me

> seriously and understand that 4s is basically a demon from hell?!?!

>

> i cant STAND school or public places or even listening to my sister

talk!

>

> if you would, please share how you got family or friends to

understand my situation and how

> serious it really is!

>

>

> thanks!

>

[Guest guest]

Hi, This is exactly the sort of thing you can post on here... glad you did.I guess compared to some families, mine have not been too bad. ... just averagely lacking in understanding, their nasty comments were usually only when they were stressed about something themselves. In some ways, I'm think because I felt ashamed and embarrassed about 4S it has mad me an easy target or scapegoat for other family issues (however little) - so I never talked about it.Anyway, when I found this group, I suddenly got really clear that this isn't something that I had made up. Because I've seen so many shrinks about this, I used to think that may be deep down I wanted to have this. Or needed to have it. I'm completely over that. Now I am not ashamed, may be still a bit embarrassed, but I think the people around me can tell that I've moved on and are treating me a bit differently.I've mentioned this group to one friends and all my family, and I mentioned the NIH interest which I feel adds "credibility". With my family, we have had our first brief chat about it which didn't arise during an argument. This was a normal chat that wasn't in the heat of my (or their) rage, anger, annoyance or while I'm trying to get away from their eating sounds. (walking out the door).My partner is absolutely relieved that I have started talking normally about it. It's not a no go zone anymore. He actually asked me to tell the group that, because he though other partners might feel the same. I still hate talking about this to anyone, but my mum said 'well what can I do to help?'. So I said, that the biggest help she could do was - not to pick at food while I'm around,- to try to eat more quietly (with her mouth shut :-) for example, and - not to linger over her food, because I use my own eating to mask the sound of others.- and if she was feel particularly kind and friendly, she could also put the background music on when I'm around, rather than making some huge point that I should do it.And she did... I know she'll forget, but, that's OK, I'll remind her.I know every one has different things they need from the people around them, so good luck with yours. I really know how you feel. I've lived with this for 36 years, but I think I'm learning that talking about it might be a good thing. (even though I hate talking it's not as bad as enduring the noises). I don't know if this is the sort of thing you can post on here, but I'm feeling very down and its mainly 4s's fault. I don't have anyone to talk to about it because its just not serious to them and I'm not the type of person to spill my guts to friends or family. Its created many more problems for me and I don't know what to do anymore How can I make my family take me seriously and understand that 4s is basically a demon from hell?!?!i cant STAND school or public places or even listening to my sister talk!if you would, please share how you got family or friends to understand my situation and how serious it really is!thanks!

[Guest guest]

I have it too.My family is aloof,I don't talk to them-they don't talk

to me actually.I am not sure what to say in that regard.I am on

disability so I can stay home-isolate.I ran out of my doctors office

last friday because of this.I have to get blood work done and dread

going back.I can sympathize with you.For me medications atleast made

it worse.I am looking on the internet for natural help-vitamins and

what not,but buying them is is slow because I am poor.Most milk

products seem to make it worse.Make a list.

Take care.

Jay

[Guest guest]

I showed my folks Dr. 's website. That's all it took for my parents

to understand and pay half the cost for the white noise generators.

They don't do s--t to modulate their voices, but they understand it's a real

problem now.

= M-F.

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

>I don't know if this is the sort of thing you can post on here, but I'm

>feeling very down and its

> mainly 4s's fault. I don't have anyone to talk to about it because its

> just not serious to them

> and I'm not the type of person to spill my guts to friends or family. Its

> created many more

> problems for me and I don't know what to do anymore How can I make my

> family take me

> seriously and understand that 4s is basically a demon from hell?!?!

>

> i cant STAND school or public places or even listening to my sister talk!

>

> if you would, please share how you got family or friends to understand my

> situation and how

> serious it really is!

>

>

> thanks!

[Guest guest]

I empathize with you. I struggle with the same kind of things you

described and asked about each day too.

When I go out into public places, I always wear headphones and take my

MP3 player with me. I either listen to Brown Noise or comfortable music

with the volume turned all they way up to drown out all the trigger

sounds. If I have to drive, I turn the radio to a spot on the dial that

is all static and turn that up loud in the car. This is the only way I

can survive public places without getting immensely depressed, upset and

hurt from my sound sensitivity.

It has taken me over 20 years to get my family to acknowledge that I am

struggling with sound sensitivity. At times although they act like I'm

making it all up and do things that make my condition and sanity worse.

I too have a hard time with many types of voices. The only way I have

found to deal with this is to learn to be quiet and not engage in too

much conversation and become like a Hermit, lock myself away in my room

and talk through the door, as that helps muffle the sound of their voices.

I also tend to do activities alone by myself. This makes me sad that I

have to do that in order to survive with this sound sensitivity which is

why I hope someday a solution for all of us who suffer will be found. To

enable us to interact with our society in a more peaceful and calm way.

I attempted to go to college twice in my life. At some point my sound

sensitivity gets so overwhelming that it affects my ability to function

in my classes. I end up spending the time at school angry because all I

do is bear the pain of sound sensitivity which makes it so hard to

learn, keep up with my classes and be able to graduate!

I tried going to the Disability office to get help, and they told me

what I have is not considered a disability so they would not help me!? I

even tried the free health clinic on campus, but again they had no clue

as to what I was talking about and could not help me. One student was

hard of hearing and he got a lot of help in class and that really pissed

me off!

The therapist I've been seeing lately, says it is okay to do the things

you need to in order to take care of yourself especially for your

sanity. That is the most important thing you can do before you try to

help others, is to care for yourself first. For us who suffer from this

hellish condition, we have to do things that not everyone else may

understand (like having to wear headphones out in public all the time

listening to Brown Noise etc.).

She helped me realize that you don't have to explain your situation to

anyone. If they ask just tell them it is because of a:

MEDICAL CONDITION

Most people understand those two words better than trying to explain

" 4S " " Hyperacusis " or " Sound Sensitivity " . That would be a nugget of

advice I have for you and everyone else in this group.

Hang in there, I know it can be painful, but remember to do what you

need to do to in order to keep your sanity, even if no one else

understands. It is their loss if they don't care enough to want to

understand and help you do that.

-Randall

[Guest guest]

Thank you all for the ideas. I'm considering showing my family the website and

this yahoo group. Or just sending it to them in an email because I don't want to

hear them breathing down my neck when I'm sitting at the computer. I've

'casually' told my mom about it and all she did was laugh. I'm sure it wasn't

laughing like it was funny, just like, this is ridiculous laugh. You know? Well,

she never said anything about it again. And I have told my sister once, and she

ACTS like she might care, but then, when I ask her to stop clapping or talking

she does it more because she KNOWS IT ANNOYS ME!!!

I will let you all know how it goes if I tell them.

>

> Subject: Re: help!

> To: Soundsensitivity

> Date: Monday, November 17, 2008, 11:06 PM

> veggietater89, I'm sorry you are struggling but please

> know you are

> not alone. I also have a hard time with some family

> members

> understanding my 4S. I've decided that some people

> will just never

> get it. You said that you aren't the type of person to

> spill your

> guts to family or friends. Is that because you don't

> think they will

> listen or for fear that they won't care? I know what

> that is like.

> However, if you don't normally spill your guts, maybe

> if you do they

> will realize something is really wrong? Are you currently

> seeing a

> doctor for this? If not, you may want to try that route.

> If you can

> get a medical professional to back you up it could help. I

> would

> suggest you go out on a limb and sit down with your family

> and really

> have a heart to heart with them. Show them this website

> and tell

> them how it makes you feel. Try to compare how hearing a

> trigger for

> you is like something they hate multiplied by 10! Ask them

> to please

> help you with this. I hope things will work out with

> you... all you

> can do is try right? I don't have anyone to talk to

> about this

> either except my mom but she's a thousand miles away.

> Just remember

> we are all here for you even if your family and friends

> aren't. Stay

> strong!

>

>

> >

> > I don't know if this is the sort of thing you can

> post on here, but

> I'm feeling very down and its

> > mainly 4s's fault. I don't have anyone to talk

> to about it because

> its just not serious to them

> > and I'm not the type of person to spill my guts to

> friends or

> family. Its created many more

> > problems for me and I don't know what to do

> anymore How can I

> make my family take me

> > seriously and understand that 4s is basically a demon

> from hell?!?!

> >

> > i cant STAND school or public places or even listening

> to my sister

> talk!

> >

> > if you would, please share how you got family or

> friends to

> understand my situation and how

> > serious it really is!

> >

> >

> > thanks!

> >

[Guest guest]

Tatum,I understand so much what you are going through. When I was a kid I would crawl out of my skin from my family's noises and my mother would tell be to stop being such a brat. My sister would egg me on making sounds just to get me in trouble. I was torture..But how lucky are you that you found this group. Up until very recently I thought I was alone and no one could understand what I was going through. My son who is now 15 has 4s too (it started over the past year) and since I understand his problem I help him by giving ear plugs to wear during meals, or letting him take his food into another room if he needs to. He always brings his ipod with him on car rides and I encourage him to express his what he is feeling on healthy words (he will say something like "my 4s is being triggered by your

chewing sounds" instead of "STOP CHEWING SO LOUD" (which is what we all feel like yelling right?).Anyway I encourage you to show your family this website and this posting. I would be happy to speak with your parents if you felt in would help so I can explain the problem from both sides - being a kid with 4s and having a kid with 4s. And keep posting your feeling he on this website - we all understand how you feel and can help you through a tough day.Best,Amy

> From: Darlene <gizziecookie@ yahoo.com>

> Subject: Re: help!

> To: Soundsensitivity@ yahoogroups. com

> Date: Monday, November 17, 2008, 11:06 PM

> veggietater89, I'm sorry you are struggling but please

> know you are

> not alone. I also have a hard time with some family

> members

> understanding my 4S. I've decided that some people

> will just never

> get it. You said that you aren't the type of person to

> spill your

> guts to family or friends. Is that because you don't

> think they will

> listen or for fear that they won't care? I know what

> that is like.

> However, if you don't normally spill your guts, maybe

> if you do they

> will realize something is really wrong? Are you currently

> seeing a

> doctor for this? If not, you may want to try that route.

> If you can

> get a medical professional to back you up it could help. I

> would

> suggest you go out on a limb and sit down with your family

> and really

> have a heart to heart with them. Show them this website

> and tell

> them how it makes you feel. Try to compare how hearing a

> trigger for

> you is like something they hate multiplied by 10! Ask them

> to please

> help you with this. I hope things will work out with

> you... all you

> can do is try right? I don't have anyone to talk to

> about this

> either except my mom but she's a thousand miles away.

> Just remember

> we are all here for you even if your family and friends

> aren't. Stay

> strong!

>

>

> >

> > I don't know if this is the sort of thing you can

> post on here, but

> I'm feeling very down and its

> > mainly 4s's fault. I don't have anyone to talk

> to about it because

> its just not serious to them

> > and I'm not the type of person to spill my guts to

> friends or

> family. Its created many more

> > problems for me and I don't know what to do

> anymore How can I

> make my family take me

> > seriously and understand that 4s is basically a demon

> from hell?!?!

> >

> > i cant STAND school or public places or even listening

> to my sister

> talk!

> >

> > if you would, please share how you got family or

> friends to

> understand my situation and how

> > serious it really is!

> >

> >

> > thanks!

> >

[Guest guest]

Thanks Amy

It makes me happy that you do actually care about your son and encourage him to

be as comfortable as possible. I hope my parents will be the same way. I think

they may be interested in speaking to you once I tell them because they will be

in the same situation as you and they won't know what to do. They need to let me

leave rooms and not question my ipod all the time. I'm not sure when I will tell

them. I'm planning on sending an email to them in the morning when I go to

school so they can read it and think about it.

>

>

>

> > From: Darlene <gizziecookie@ yahoo.com>

>

> > Subject: Re: help!

>

> > To: Soundsensitivity@ yahoogroups. com

>

> > Date: Monday, November 17, 2008, 11:06 PM

>

> > veggietater89, I'm sorry you are struggling but

> please

>

> > know you are

>

> > not alone. I also have a hard time with some family

>

> > members

>

> > understanding my 4S. I've decided that some

> people

>

> > will just never

>

> > get it. You said that you aren't the type of

> person to

>

> > spill your

>

> > guts to family or friends. Is that because you

> don't

>

> > think they will

>

> > listen or for fear that they won't care? I know

> what

>

> > that is like.

>

> > However, if you don't normally spill your guts,

> maybe

>

> > if you do they

>

> > will realize something is really wrong? Are you

> currently

>

> > seeing a

>

> > doctor for this? If not, you may want to try that

> route.

>

> > If you can

>

> > get a medical professional to back you up it could

> help. I

>

> > would

>

> > suggest you go out on a limb and sit down with your

> family

>

> > and really

>

> > have a heart to heart with them. Show them this

> website

>

> > and tell

>

> > them how it makes you feel. Try to compare how

> hearing a

>

> > trigger for

>

> > you is like something they hate multiplied by 10! Ask

> them

>

> > to please

>

> > help you with this. I hope things will work out with

>

> > you... all you

>

> > can do is try right? I don't have anyone to talk

> to

>

> > about this

>

> > either except my mom but she's a thousand miles

> away.

>

> > Just remember

>

> > we are all here for you even if your family and

> friends

>

> > aren't. Stay

>

> > strong!

>

> >

>

> >

>

> > >

>

> > > I don't know if this is the sort of thing you

> can

>

> > post on here, but

>

> > I'm feeling very down and its

>

> > > mainly 4s's fault. I don't have anyone to

> talk

>

> > to about it because

>

> > its just not serious to them

>

> > > and I'm not the type of person to spill my

> guts to

>

> > friends or

>

> > family. Its created many more

>

> > > problems for me and I don't know what to do

>

> > anymore How can I

>

> > make my family take me

>

> > > seriously and understand that 4s is basically a

> demon

>

> > from hell?!?!

>

> > >

>

> > > i cant STAND school or public places or even

> listening

>

> > to my sister

>

> > talk!

>

> > >

>

> > > if you would, please share how you got family or

>

> > friends to

>

> > understand my situation and how

>

> > > serious it really is!

>

> > >

>

> > >

>

> > > thanks!

>

> > >

[Guest guest]

This is actually against the law. They cannot put you into a cookie-cutter program. They have to make decisions on an individual child's situation.

Hilda

After spring break I always ask when ESY is scheduled this summer and my son always manages to qualify and they create an addendum to his IEP. ESY is typically a half day program 4 days a week (sometimes mornings and sometimes afternoons). There are specific dates for ESY and it is not typically the entire summer. A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

[Guest guest]

My son's IEP always indicates NO for ESY until after spring break. Each school my son has attended collects data after the holiday break and again after spring break. He always has a hard time getting back into the routine with more "hiccups" throughout his days after any break from the school routine.

If the school is not collecting data, you many need to document your son's behaviors in the days and weeks following a school break.

After spring break I always ask when ESY is scheduled this summer and my son always manages to qualify and they create an addendum to his IEP. ESY is typically a half day program 4 days a week (sometimes mornings and sometimes afternoons). There are specific dates for ESY and it is not typically the entire summer.

We set goals specifically for ESY that focus more on social skills or any problem areas and less on academics. I convince my son he's going to "camp" and he's not going to school to do school-work. They play games and work on other skills like having reciprocal conversations with peers.

I hope this helps.

Maggie

To: Texas-Autism-Advocacy Sent: Thursday, February 19, 2009 1:44:52 PMSubject: Help!

Dear Listmates:I was reviewing the most recent Ard document and for ESY they checked"No." I asked them to change it. They have refused. Now they saythey want to do a needs assessment for ESY, but there is no one in ourdistrict qualified to determine whether how much and what scope os ESYa child with autism needs.They only want to offer four days a week for four hours a day. Theyhave no teacher as yeat, and they have no program to meet my son's needs.I would not trust them to do this needs assessment. Any one out thereknow anyone in Dallas who would be qualified to determine this?Also, I refuse to sign until they change the box regarding ESY.Now what?They have always predetermined this as well as predetermining ouragreement to each section of the ARD document. Whether we agree ornot should not be checked off until we do so in the meeting or afterwords.Please

advise.Haven

[Guest guest]

We are all about FAPE... as a matter of fact.. it's part of our name. Let me

know what you need to get done for your son's ESY and we'll see if we can change

that for him and the other kids.. ESY is so important because regression occurs

with our kids without it.. get in touch... we want to help.

E. , Sr.

http://www.getafape.org

Exec. Dir. , Co-founder

Peace4kids@...

II's father

>

> Once again this year I am advocating for appropriate ESY services for my son

with autism.

>

> Last year, as always, they started out by insisting that he did not need ESY.

Then they proposed a situation not a program that all other parents declined as

ESY is ALWAYS presented to parents in a " take it or leave it " manner. I was

even told this, " We told you what it ws. You either want it or you don't "

>

> In brief, last year they offered to send my high-functioning child with autism

(eight years old) 25 miles further away to a self-contained room with non-age

appropriate students (19 and 20 year old MR males).

>

> My son also has life threatening health issues. None of the workers had ever

used an epipen or actually performed CPR on a real person. In the event of a

crises, It could actually take up to 30 minutes for an ambulance to arrive.

Then he would be transported to a tiny care facility and then probably care

flight would be called, but by then of course, my son would all ready be dead.

>

> Long story short, I continued to advocate for my son, and the district paid

for placement in a private setting. My son flourished in the private school.

>

> In October of '08, I urged the new principal to begin now to develop

appropriate ESY services for my son so that we did not wind up in dis agreement

again. They did nothing.

>

> They came to the original ARD in the spring with the same statement that my

son did not need ESY. I requested retesting to assess the progress of his goals

and skills. While the testing showed some progress in some areas, there are

critical areas in which little or no progress has been made. Then they said

that he did qualify for ESY.

>

> They said they had decided to put him in with the third grade students who

failed the TAKS. The teacher would divide her time between my son and the other

kids. My son would have no aide. There was no explanation as to how and in

what manner my child would be taught.

>

> I disagreed. My son has lost two percentage points in social skills since we

had him tested last year.

>

> He is about to be ten years old. The only area in which he is now one grade

level below his peers is in spelling (photographic memory).

> In all the other areas, he is two to three years behind.

>

> In two critical areas regarding reading skills, he tested at BELOW the

kindergarten level.

>

> Then the district said they would add a general education teacher as his aid

and she would work with our son one on one for the whole lengvth of ESY, which

by the way is the same every year no matter what: four hours a day, four days a

week, four weeks during the summer. No child is ever deemed to need more.

>

> I disagreed. There was no speech or OT. The district assumed we should

provide for that. Recent testing showed discrepancies in these areas to be

" clinically significant. "

>

> Their program did not address his need for social skills intervention, another

area of deficit that is clinically significant.

>

> Then they said that they would pay for an additional two weeks in the YMCA

enrichment program designed for NT kids. This would allow him interaction with

NT kids, but of what benefit is unclear. They made no offer to provide an aid

for this. Then they would provide an aide but at our expense. Then they said

they would send the special education teacher up to the Y to integrate IEP goals

for only two days of the two weeks.

>

> They have been pressuring me to sign. I have not signed and after much

consideration, I have determined their program does not meet the unique needs of

my son. His issues with auditory processing disorder were not address. The

five W's have not been clearly outlined.

>

> I wrote the principal and told her that I could not sign because at this time

I disagree, and that would be what I would have to sign that I disagree. Now,

once again, time is running out.

>

> I need parental input. I know many of you have been through similar

circumstances. If the district had shown an interest in meeting with me early

in the year and developing an appropriate program, I would have been more than

happy to sign off, but I cannot in good conscience sign off on a sub-standard

program that is inappropriate.

>

> My son is falling further and further behind his peers -- not due to a lack of

intellect, but due to a six year failure to provide FAPE.

> Where do we go from here?

>

> Please email us directly at hdelay@...

>

> Thank you all!

>

> Shygirl

>