Re: Really frustrated! - sensory integration issues - dealing with crowds and noises

[Guest guest]

<<We see a behavioral psych who advised us to give him a

consequence for this behavior (e.g., take him home immediately and

put him in his room). I don't agree with this - think it's

expecting too much for him to be able to override the sensory system

in this case. I'm wondering what to do. Do I just give up and quit

trying these environments? >>

Somebody should take that psych someplace very very painful and then punish him

if he tries to leave. That is one of the most horible things I've ever heard.

No you don't need to give up and quit. You can try gradually desensitizing

him...like spend 30 sec in a noisy environment then let him leave right away-

let him know ahead of time he will only be there for a short time. Show him

visually if he can understand time.Then gradually, very gradually increase the

time. You can try headphones or the earphone- noise blocker things they sell at

Home depot for $10. You can try ear plugs. Or you may in fact have to limit your

outings with him at some point. I can't stand noisy places myself and

certainly cannot. It's like sticking her in a vat of boiling water.

There are many sound therapy programs you can try....some are even cheap believe

it or not, where they listen to filtered music every day and gradually are

desensitized to sounds. Doesn't work for all but it's something to consider.

Firing that shrink is something else to consider.

Sherry

[Guest guest]

Hi amy,

I just wanted to tell you I agree with you and not the psych....but I

do think that you need to be sure it isn't behavior. It sounds like

what you described as definitely sensory. Have you tried head

phone...no music just headphones...maybe try to explain to him if it

hurts his ears he can put them on. Also I know my daughter went thru

a few stages when she couldn't tolerate loud music...about age 2 & 3

and then again in Junior High,,,we tried many times to get her too

the dance but she would have none of it and you weren't going to stop

her either..just try ( I know it was that particular auditorium). I

believe different places have different acoustics and since are kids

are super sensitive they just can't help it. Don't give up if you did

quit taking him you may miss some great experiences for him. I guess

we just always need a plan...or an extra person who doesn't mind

sitting out with them. Hang in there!!

Trish

> Hi there. I'm really frustrated and need some advice. My 10 year

> old son with DS has always had issues with loud noises and crowds.

> Sometimes we've been able to do the circus and other performances.

> As he got older it got a little bettter. But the past year it's

> gotten a lot worse. My daughters had a dance recital today and he

> refused to go in the auditorium. The music hadn't even started and

> lights had not gone down yet. We carried him in hoping he's

> acclimate, but he melted down as soon as the lights dimmed. I took

> him out and he watched from the doorway the whole time. He tried

> to go in once on his own, but ran out.

>

> I figured he would get better as he got older. I didn't expect a

> regression. We see a behavioral psych who advised us to give him a

> consequence for this behavior (e.g., take him home immediately and

> put him in his room). I don't agree with this - think it's

> expecting too much for him to be able to override the sensory system

> in this case. I'm wondering what to do. Do I just give up and quit

> trying these environments? My son sees an OT and we're doing

> everything we can to address the sensory, so that piece is in

> place. I'm eager to hear any information, experience or advice

> members of this group might have! thank you!! Amy

>

>

>

>

>

>

>

[Guest guest]

The little guy we have can't stand loud noise either. I felt so bad when

the school decided to test the fire alarms and we had no warning that it was

going to happen. Sudden chaos and loud noises all at once without warning isn't

good at all.

We tried to use the filtering headphones for him as a calming mechanism

but he did not like the headphones themselves nor did he like the music.

When we are in lunch it is very loud at times. It bothers me so I know

it has to bother him. On those days the class will eat their lunch and we will

return to the classroom ahead of time. I know he has to get use to the way real

life is but getting him, or the other children for that matter,terribly upset is

not my goal.

With my own son, he has been introduced to noise the way suggested in

the previous message. With a small amount at a time. At first he couldn't

tolerate it at all and now he can for most of the time if it isn't too long. He

also brings his gameboy to play but has to have that sound down. It seems to

work.

If I rambled I am sorry. I'm exhausted tonight.

---------------------------------

Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Guest guest]

regarding the earphone noise blockers; I forget whay you call them, they're red

(ours are) and they're used for people using loud machinery or like the guys who

direct landing planes??? Anyway these were suggested to me a long time ago on an

autism list so I hopped right over to home depot and bought them for ten measly

dollars! They really cut out alot of noise. Unfortunately jamie refused to wear

earphones until just this past couple of years...now she has them on with music

going constantly. Sooooo I ended up using them LOL. played LOUD Barney

music, rewinding on her cassette player, and her videos at the same time, then

she would get into this eeeehhhhhhhhhhh long annoying moaning noise for hours on

end and even my husband with his unbelievably loud snoring was driving me

nuts(ier). She's have her videos going in one room and dh had a game on in

another and the two of them made me autistic too:-) I put them on to sleep in in

the morning or sometimes when I just can't stand the dang commotion anymore. Of

course you can't sleep on your side with them....but sometimes it's just nice to

lower the volume on everything for awhile. Anyway, even tho they didn't work for

they worked well for me. When we have gone to motels and she has the

videos on dh and I switch off wearing the headphones in order to stay sane.

(sort of)

Sherry

[Guest guest]

Hi Amy,

My son also has issues with noise and crowds. The worse thing I could do is

force him into any situation that causes an anxiety issue. He has had his good

years and bad years. We happened to be in a bad year right now. I cannot get him

into a movie theater and many days a restaurant. He onced loved these

activities. A dance recital would have sent him over the edge. I probably would

not be able to get him out of the house for weeks if I had insisted he attend.

He also takes private dancing lessons and can tolerate the music with his

teacher in that setting. He enjoys it very much. It was a work in progress to

get him to that point with music. The teacher would love to include him in a

recital but we know it's not possible. We are ok with that.He has always gone on

all school field trips in the past and loved every minute of the trips. I can't

even talk about it this year. Next year may be an entirely different year. I

think your psych has no experience with sensory and

anxiety issues. I hope things get better.

Charlyne

Mom to Zeb 13 DS/OCD/ASD?

amyantler wrote:

Hi there. I'm really frustrated and need some advice. My 10 year

old son with DS has always had issues with loud noises and crowds.

Sometimes we've been able to do the circus and other performances.

As he got older it got a little bettter. But the past year it's

gotten a lot worse. My daughters had a dance recital today and he

refused to go in the auditorium. The music hadn't even started and

lights had not gone down yet. We carried him in hoping he's

acclimate, but he melted down as soon as the lights dimmed. I took

him out and he watched from the doorway the whole time. He tried

to go in once on his own, but ran out.

I figured he would get better as he got older. I didn't expect a

regression. We see a behavioral psych who advised us to give him a

consequence for this behavior (e.g., take him home immediately and

put him in his room). I don't agree with this - think it's

expecting too much for him to be able to override the sensory system

in this case. I'm wondering what to do. Do I just give up and quit

trying these environments? My son sees an OT and we're doing

everything we can to address the sensory, so that piece is in

place. I'm eager to hear any information, experience or advice

members of this group might have! thank you!! Amy

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[Guest guest]

Dear Amy:

My son is also 10 and they sound a lot alike! We have always had

problems with loud noises and large scary spaces. It has gotten a

bit better (we can actually go to the movies now, but only when he

says he wants to go - otherwise, it's not worth it. Sometimes he'll

say, " let's go see " Into the Wild " or whatever and no matter what

we're doing we stop and get our shoes on and go to the next movie!

It's so unusual for us to be able to go we take advantage no matter

what's going on! It must look like a fire drill. Quick, Liam wants

to go to the movies! Everybody jump!)

But generally, I have found his behavior to be getting harder to

deal with as he gets older, even though he's coping better with the

loud noisy places sometimes. I think the way he has gotten used to

it as by going places with his camp and his class at school.

Sometimes they have to take him out, sometimes, they just make him

deal with it as long as he's not distracting everyone else in the

joint. However, we were not able to make it happen for him. I

think it takes non-family to deal with some issues, at least for

Liam.

Does your son also have PDD or ASD? Or just sensory integration

issues?

I also think your behaviorist is way wrong on this. The idea of

punishing a kid for something they can't help is mean. It's like

punishing someone for being left-handed.

Where do you live? It sounds like our kids have a lot in common!

What do you think regression is coming from? I wish I could

understand why Liam is getting more difficult, too!

Mom to Liam 10, DS/PDD and Jack, 5

>

> Hi there. I'm really frustrated and need some advice. My 10 year

> old son with DS has always had issues with loud noises and

crowds.

> Sometimes we've been able to do the circus and other

performances.

> As he got older it got a little bettter. But the past year it's

> gotten a lot worse. My daughters had a dance recital today and he

> refused to go in the auditorium. The music hadn't even started

and

> lights had not gone down yet. We carried him in hoping he's

> acclimate, but he melted down as soon as the lights dimmed. I

took

> him out and he watched from the doorway the whole time. He tried

> to go in once on his own, but ran out.

>

> I figured he would get better as he got older. I didn't expect a

> regression. We see a behavioral psych who advised us to give him

a

> consequence for this behavior (e.g., take him home immediately and

> put him in his room). I don't agree with this - think it's

> expecting too much for him to be able to override the sensory

system

> in this case. I'm wondering what to do. Do I just give up and

quit

> trying these environments? My son sees an OT and we're doing

> everything we can to address the sensory, so that piece is in

> place. I'm eager to hear any information, experience or advice

> members of this group might have! thank you!! Amy

>

[Guest guest]

OK I've got a question to pose that we just can't answer. I'm sure there's a

logical explanation- after it is LOL. For someone who has always been

afraid and made anxious by loud noises and loud places why is it that she wants

her music with earphones cranked up to an eardrum splitting level? You can hear

the sound coming out of the earphones...I know this is bad for her but she goes

crazy nagging to have the volume turned up. Perhaps it is because SHE is

actually in control of what she hears, rewinding and all? She can go anywhere

now as long as she's got her earphones and music on which is a great liberation

for us but I just don't get the craving for the loudness.

Sherry

[Guest guest]

Sherry: Tori is the same way, except she won't use earphones. If we speak

loud, or there is a loud noise, or there are too many people and it is loud,

she freaks...however, if it is her music, she wants it blasting. I have no

explanation for it..but I have heard alot of our kids do this. They are

hyper-hypo sensitive to certain sounds.

Liz

Re: Re: Really frustrated! - sensory integration

issues - dealing with crowds and noises

> OK I've got a question to pose that we just can't answer. I'm sure there's

> a logical explanation- after it is LOL. For someone who has always

> been afraid and made anxious by loud noises and loud places why is it that

> she wants her music with earphones cranked up to an eardrum splitting

> level? You can hear the sound coming out of the earphones...I know this is

> bad for her but she goes crazy nagging to have the volume turned up.

> Perhaps it is because SHE is actually in control of what she hears,

> rewinding and all? She can go anywhere now as long as she's got her

> earphones and music on which is a great liberation for us but I just don't

> get the craving for the loudness.

> Sherry

>

>

[Guest guest]

I think it may be the vibration that comes from having the music louder.

Just my guess - probably a sensory thing.

Jayne

Sherry Muhs wrote:

OK I've got a question to pose that we just can't answer. I'm sure there's a

logical explanation- after it is LOL. For someone who has always been

afraid and made anxious by loud noises and loud places why is it that she wants

her music with earphones cranked up to an eardrum splitting level? You can hear

the sound coming out of the earphones...I know this is bad for her but she goes

crazy nagging to have the volume turned up. Perhaps it is because SHE is

actually in control of what she hears, rewinding and all? She can go anywhere

now as long as she's got her earphones and music on which is a great liberation

for us but I just don't get the craving for the loudness.

Sherry

[Guest guest]

Liz and Jayne.....I was thinking about the vibrating effect too, or possibly

Liz, do you think they are just trying to drown out the ambient sounds that they

don't like? seems like such a " typical " teenager with the music on all the

time; she's definitely drowning out Mom when I ask her to do something. It's

funny while she has the music and headphones on she will try and say a word and

it will come out loud....much better than her whispers or mere mouthing during

speech therapy. She likes to wail away sometimes too doing some kind of

mysterious karaoke. She's a nut!

Sherry

[Guest guest]

Sherry: I really couldn't say. Tori listens to music and bangs-whether we

are home or in the car.

Liz

Re: Re: Really frustrated! - sensory integration

issues - dealing with crowds and noises

Liz and Jayne.....I was thinking about the vibrating effect too, or possibly

Liz, do you think they are just trying to drown out the ambient sounds that

they don't like? seems like such a " typical " teenager with the music

on all the time; she's definitely drowning out Mom when I ask her to do

something. It's funny while she has the music and headphones on she will try

and say a word and it will come out loud....much better than her whispers or

mere mouthing during speech therapy. She likes to wail away sometimes too

doing some kind of mysterious karaoke. She's a nut!

Sherry

[Guest guest]

Thought I share from one of my many book collections of Sensory Processing

Disorder, etc.

This has been ONE of the best journey on anything to do with SI has this helped

me to understand 's issues and what a Godsend!

I am a huge fan of learning about SI.

Can y'all relate?

Had an incredible Mother's Day. was able to tolerate so much at our large

family gathering this weekend which was nice to observe best gift of all. There

were moments he would get overwhelmed and then I would find him alone in one of

his cousin's bedroom on top of the bunkbed and then he would join us once he

would become calm.

Everyone was surprised to see what an outcome, impressed to hear of our journey

since its been awhile. Especially at his age as they all wonder how it would be

as he was getting older? I'm shocked they actually were interested on asking

questions, etc. as its never been like this in the past. I could of told them

yep, yep with what the family were sharing of the past, but I actually loved it.

Everyone loved being around him, of course with allowing it, staying

engaged with some family activities and some had even asked if he was under

meds? " is not under any meds " , sometimes I wonder but great to see what

accomplishments for now. I'm also shocked that I was not put down on the Bio-med

alternative or GF/CF diet route as my older siblings are having their share of

health issues, this has awaken their senses of understanding on why I have gone

this route. I was expecting to tell me something like " let him enjoy eating this

or that " but after their observation on the difference, they now support me, are

interested on hearing some more, to keep them updated.

On this list posted from the book, there is so much that we worked on, able to

do so much as I never thought we could do. Hope everyone finds some

answers/solutions for your son/daughter as I have, not that I endorse what I

have posted, just thought I share something as you just never know.

SENSATIONAL KIDS by Lucy Jane , Ph. D.,OTR

RED FLAGS of SENSORY OVER-RESPONSIVITY

Red flags, warning signs -

Three distinct subtypes of SMD have been identified:

Sensory Over-Reponsivity, sensory under-responsivity, & sensor seeking.

My child's sensory responses include being frequently bothered by:

___Fuzzy or furry textures (wool clothing, animal fur, textured blankets)

___Mud or glue on his hands

___Crawling or walking barefoot on a coarse carpet or grass

___Feeling crumbs around his mouth

___Having his hair, fingernails, or toenails cut

___Fragrance from perfume or bath products

___Food textures

___Background noises when he is trying to concentrate

___Noise in a restaurant, mall, or large gymnasium

___Any loud, unexpected sounds, such as sirens, school bells,

an engine backfiring

___Playing on swings and slides

___Bright lights or sunshine

___Being upside down, as when turning a somersault

My child's behaviors frequently include being:

___Aggressive or impulsive when overwhelmed by sensory stimulation

___Irritable, fussy, moody

___Unsociable, avoids group activities and has trouble forming relationships

___Excessively cautious and afraid to try new things

___Upset by transitions and unexpected changes

RED-FLAGS of SENSORY UNDER-RESPONSIVITY

My child has these sensory symptoms:

___Doesn't cry when seriously hurt and isn't bothered by minor injuries

___Doesn't seem to notice when someone touched him

___Dislikes trying new physical activities and rarely initates

them

___Nearly always prefers sedentary activities like computer

time to active physical games

___Was slow or unmotivated to learn to dress and/or

feed himself

___Often seems unaware of what's going on around him,

doesn't hear his name being called

___Often seems unaware of body sensations such as hunger.

hot or cold

___Is or was unaware of the need to use the toilet

___Is not able to use his hands for a task without watching them

___Does not notice noxious smells

___Does not notice food or liquid left on his lips

My child's behaviors frequently include being:

___ Passive, quiet, withdrawn

___ Difficult to engage in conversation or other social interaction

___ Easily lost in his own fantasy world

___ Apathetic and easily exhausted

___ Excessively slow to respond to directions or complete assignments

___ Exhibits no inner drive to get involved in the world

around him; uninterested in exploring games or objects

RED-FLAGS of SENSORY SEEKING:

My child has these sensory symptoms:

___ Is on the move constantly

___ Likes crashing, bashing, bumping, jumping and roughhousing

___ Shows a stron preference for excessive spinnin, swinging or rolling

___ Constantly touches objects; touches and/or intrudes on people

___ Seems unable to stop talking and has trouble taking his

turn in conversations

___ Takes excessive risks during play, e.g., climbs high into

trees, jumps off tall furniture

___ Loves to play music and television at extremely high volume

___ Seeks opportunities to feel vibrations, such as by leaning

against stereo speakers or appliances like the washer

and dryer

___ Frequently fixates visually on objects such as reflections of

the sun in the side-view mirrors of the car

___ Prefers foods with stroung flavors/tastes, e.g., bitter,

sour, spicy

___ Often licks, sucks, or chew on non-food items such as

hair, pencils, clothing

___ Is nearly impossible to take to movies, church, or into

other settings that don't allow him to move around

___ Is unable to sit still in a chair

___ Smells or tastes objects when playing with them

My child's behaviors frequently include being:

___ Described by others as hyperactive

___ Angry or even explosive when he is required to sit still or

stop what he's doing

___ Intense, demanding, hard to calm

___ Prone to create situations others perceive as " bad " or " dangerous "

___ Excessively affectionate physically

This is just piece of what is on the book which also includes SBMD (Senory-based

Motor Disorder

and Red Flags of :

Dyspraxia

Postural disorder

Sensory Discrimination Disorder (SDD)

Just because you've recognized your child in one or more of the checklists above

doesn't mean he/she has SPD. It's possible that a medical condition or a

non-sensory disorder is present. Some children arrive later at the milestones

than others; yours may be one of them.

However, when a pattern of atypical behavior persists and the pattern interfers

with the child's ability to develop and enjoy a normal, active

childhood, questions need to be asked and answers need to be asked and answers

found-the sooner the better, Early diagnosis is one of the keys to effective

intervention in children with SPD.

The road to diagnosis must begin with your child's physician.