All the Wrong Stuff

[Guest guest]

That is what Enrique says in a panic attack. I do not know what to do about

this.

He complains that no one cares or sympathizes with him. " Why, " he screams at me,

" Can't you treat me the way you do Putter? "

Ah. Well, Putter does not scream that I am torturing him, Putter does not ask

" Why are you doing this to me, " after you have just spent an hour trying to

help. Putter does not say, " No noise, no noise, " whenver any one else makes any

kind of sound.

And Putter does not weigh over two hundred pounds. Putter is just less scary in

a tantrum.

It is particularly bad with . Here is an example. Enrique and

like these two Toonami shows on Cartoon Network, I cannot remember the

names as they are kind of weird.

Anyway, goes in to tell Enrique that the first show is coming on. And

Enrique SCREAMS at him because Enrique is involved in a Magic The Gathering game

online and can't quit without conceding (and he would rather die than concede).

is slightly miffed that Enrique yelled at him for doing him a favor

and he complains. Enrique is upset that doesn't recognize that he

wasn't yelling at him; he was just upset that he might miss part of the show and

was yelling in general.

wants to point out that he hates being yelled at. Enrique shouts, " No

MORE! STOP! " and covers his ears. This has the effect of making talk

more and try to explain more. At this point, is getting pretty angry

too. Enrique hates explanations. He cuts short. hates

being interrupted, and he is also very aware that Enrique ALWAYS finishes his

sentences ( " What would you do, " I once asked Enrique, " If the house were burning

down and we had to get out, and you were in the middle of a sentence? " Enrique

thinks a moment and then says, " Finish it out on the front lawn? " ) So we have a

huge fight now that can go on for hours.

I try to get to leave so that I can get Enrique calmer. They both

make each other worse and generally Enrique is the more out of control.

does not want to go, however. Usually he is the more reasonable of

the two, and I can persuade him out the door.. " Why, " screams Enrique, " Don't

you punish him for torturing me. "

This kind of remark is almost guaranteed to bring back into the room.

" Torture you? " he screams, " I just told you the show was starting, " " No MORE, NO

MORE! " yells Enrique covering his ears.

Yuck, yuck, yuck.

From Enrique's point of view this is what is going on. The noise or whatever is

bringing him close to shutdown and he shouts urgently for people to stop it so

that he can get calmed. Since he has no bad intentions towards anyone (really!

He doesn't!) he does not understand why people do not realize what is going on

and help him. He thinks it should be simple enough just to have everyone be

quiet until he has gathered his resources and calmed himself.

I am the only family member who will stop talking when he asks. I think I am

the only family member who understands what is going on.

But I do not always do this because his method of asking is so aggravating. And

he follows me the whole time he is upset, screaming at me to help him. I don't

really have any ideas on how to help him. But if I do not answer immediately,

he screams that I am ignoring him and if I do answer he cuts me off, saying that

he has heard that before and he already knows it and he hates hearing things he

already knows.

I am not perfect and, if I have had a bad day, or am in a bad mood for whatever

reason, this kind of stuff can make me MAD! Then he yells at me and asks " Oh,

WHY did you do this to me? " as if I have spent the day plotting against him. As

if I WANT him in this two or three hours long state.

We have talked and talked about how he could ask for help in a way that did not

make people angry at him.

He says that the quieter methods don't get any results. If he isn't out of

control, no one pays him any mind, except me. This, unfortunately, is probably

true. Siblings are not interested in tiptoeing through their lives to benefit

their AS brother who isn't even nice to them half the time. So the stress or

tension or sensory overload or whatever the heck it is just builds up until

finally he is out of control in a very convincing way, and extremely rude to his

siblings who then get mad at him and make it much harder to deal with.

I do not know how to resolve this dilemma. Enrique feels that his siblings must

change as he cannot. He says he is doing everything he possibly can and that we

have no idea how many times he successfully calms himself down without causing

any problems. I imagine this is true, although I am never completely one hundred

percent convinced that it would be impossible for him to do any more than he

does. After all, we might just as well give up if that is the case. I keep

hoping that he can learn some strategy or technique that will work for him. Or

that we can find some drug.

Any ideas?

Salli

[Guest guest]

Salli,

I have a (much) milder version of this going on at my house a big

chunk of the time, so have some thoughts that may or may not

apply...feel free to ignore any and all:

1. 's comments reminded me of something that happened with

Elaine the other day. She was angry at over something or

other (common) and slammed the bedroom door rather sharply...causing

him to jump in alarm and burst into tears. I pointed out to her that

she really couldn't be slamming doors, because it hurts ' ears,

and that he was crying--we're talking genuine tears rolling down the

cheeks here. Her response?

" He ALWAYS cries, Mom. He cries because he's spoiled. "

Hm. Not my interpretation. He cries because he has severe auditory

defensiveness and slamming a door beside his head causes real live

pain. But " spoiled brat " is how *she* sees it. He " gets away with

everything " ...and she must follow rules. This is a source of intense

resentment for her, because she doesn't understand his disability and

can't bear to learn anything about it (frightens her and makes her

sad). She is also terrified that at some point in her life, she will

have to take care of him...that he will continue to ruin her life.

Siblings of kids with sensory processing differences live with a kind

of stress that is unlike any other, and I think that as parents our

job is trying to teach them their place in all of this, and that we

do recognize that all the craziness that goes with a spectrum sib is

just as tough on them as it is on the disabled child.

There is also a concern in my mind that most certainly is

aware that she resents him, and has no tools to deal with it...so he

pesters her, either trying to make friends or to make sense of what

her actions and tone are telling him. It's a cycle that goes on and

on...just as you describe in your note. The main problem is that

they are all children...and we are asking them to deal with

situations that most adults don't have adequate strategies for. And

as few strategies as our NT kids have, our disabled kids have even

fewer. It's lovely, isn't it?

2. One thing that really jumps out at me in your note is Enrique's

frantic pleas for silence...has he ever been treated for auditory

defensiveness? I'm thinking magnesium and calcium supplements....and

auditory therapy (like Vital Sounds program). If you can get the

defensiveness down, he should be able to cope much better. Would he

buy into trying any of these things? Could he tolerate wearing

headphones for 20 to 30 min twice a day if he knew it might help his

hearing be less sensitive? If there is an OT or SLP in your area

trained in this, I would make it top priority...could make a huge

difference.

3. Theory of mind (Enrique feeling that everyone MUST understand

what he is thinking simply because he is thinking it) is a big

problem here, too...dunno what you do about that. Is

willing to learn enough about it to get to the point where he can

begin to talk to Enrique calmly when things like this happen? I'm

not saying he can---Mark can't do it. But the sad fact is that

Enrique is probably right...he can't do better than he is.

4. The snowball (avalanche?) effect of one kid setting off another

is such a huge problem...we go through stages where it is almost

unbearable. I deal with it by putting people in separate rooms, and

by coming down on those who refuse to abide by my instructions to go

to neutral corners. This is mainly a stitch in time issue, in my

mind...giving people tools to stay level before things get ugly (not

always successful...not by a long stretch). I keep playdoh for

to squeeze, paper for to rip up, and soup for Elaine...when

things start to fall apart, everyone gets their coping tools. I also

use music to diffuse tension...technically aimed at , of

course, but the fact is that when it comes on, everyone gets calmer.

I don't know if you have the time or not, but it was genuinely worth

the effort to go through the process of figuring out who is a tactile

organizer, who needs sound, who needs movement, and so on...this is

the ALERT stuff. I can explain to you how to do this if you are

interested...

5. I use time ' respite worker is here to take the three older

kids out, one at a time, for some intense MOM time...an activity of

their choice where they have my undivided attention. I think it

really helps, because it tells them that even though demands

an unfair share of my attention, they are important, too.

6. There is also the double whammy of these kids being

teens...studies have shown recently that teenagers require

significantly more time to process emotional cues than either

children or adults...it's a time of intense neural reorganization,

and something has to give...so all of them, NT or not, are trying to

deal with each other during a time when none of them have the ability

to recognize cues from each other that would let them know that the

other person is upset in time to modify their actions and avoid a

confrontation.

Fun, huh?

Raena

[Guest guest]

>

> Any ideas?

>

Good gawd. I am enrique, minus the feeling tortured by the other person.

I cannot HEAR explanations when I am upset. To explain, or try to explain

to me means that you are still talking when I just need you to SHUT UP. It

hurts my head and stirs my brain up.

I can't tell you what to do with Enrique when he's like that, but I CAN tell

you what it feels like when someone tries to explain or elucidate when you

are already in a tizzy: you already KNOW what they meant; you KNOW what

they did; and you KNOW what they are trying to say. But right now your

brain is really busy just trying to pick a track to go down - finish the

game, do what you'd rather not and turn off the game, go watch the show you

want to see, or try and find the words to say 'please wait' or 'you watch in

the other room I want to finish what I'm doing' or, 'will you tape it for me

so I can finish this round. " But you can't pick a track, because the other

person keeps interrupting you, which only gets you more confused and more

angry!

The best thing could have done in that situation after getting

yelled at the first time would be to say " fine. your choice, " and then

leave and watch someplace else.

Probably no help at all,

Jacquie

[Guest guest]

oh how i wish i had some ideas! this is pretty much how james and kailey are

with each other a big percentage of the time, but they're BOTH enrique :-|

~~~~~~~~~~~~~~~~~~~~~~~~~~~

What is today, but yesterday's tomorrow - Mr. Krabs

~~~~~~~~~~~~~~~~~~~~~~~~~~~

gina, 31, ny

single mom to -

kailey, 8, autism, hyperlexia, depression, anxiety, OCD, DSI

trevor, 3, multiple developmental delays, no " official " dx yet

parker jade, due 7-25-03 :-D

[Guest guest]

Hi Raena,

You wrote that has severe auditory defensiveness, that certain

sounds actually cause him pain. seems to have that as well--he

tells me certain noises " hurts " his ears. Can you tell me what you have

done to help ? I'd like to help too, but I'm not sure what

route to take at this point. And I know you'll explain it in a user

friendly way.

Thank you!

Maggie

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

I wish I had some ideas for you :-(

Is he taking any meds now at all? There must be something he hasn't tried

yet that could help him, if you can get him to take them. How long since

the psych has tried something for him or adjusted a dose?

Sue

[Guest guest]

Ok, I have a thought. I don't know if this is too NT for Enrique, but he

seems very together when he isn't upset so ... Maybe sometime when he is in

a calm quiet mood he could learn a little about meditation. Meditation is

not so much about learning to clear all your thoughts, as it is learning to

concentrate on one thought by blocking chaotic mental activity. There are a

zillion books out there and like all things, it is a skill, practice makes

perfect, and you do get better at it. I frequently have trouble with my

thoughts racing all the time, and meditaiton has helped me gain control of

this and allowed me to stop the mental frenzy when it starts. Frantic

thinking is just an old habit that I no longer indulge anymore, but I never

knew at the time that it was something I could control.

Like I said, there are a million books out there with a million different

techniques, and this might appeal to the Aspie mind, you can " try them all. "

Or maybe when he is upset, you could try sitting with him somewhere quiet to

meditate together, so he gets the quiet he needs and knows that you are

there for him at the same time. There are also guided meditation tapes that

might be useful.

Just a thought,

[Guest guest]

Alas, I am afraid I can understand all to well, but if I hand an

effective solution surely I would be in the middle of trying it out

here. My vote is for meds and therapy, but I don't suppose he is

truly willing to do either. Ick.

[Guest guest]

>

> You wrote that has severe auditory defensiveness, that

> certain sounds actually cause him pain. seems to have that

> as well--he tells me certain noises " hurts " his ears. Can you tell

> me what you have done to help ? I'd like to help too,

> but I'm not sure what route to take at this point. And I know

> you'll explain it in a user friendly way. >

Well, one of the best things we did for his auditory processing was a

program called " Therapeutic Listening " ...it's basically an SI program

that aims to improve sensory organization by taking advantage of the

neurological link between the auditory and vestibular systems...it

consists of music that has been modified so that certain frequencies

of sound are enhanced, others downplayed--which activates the small

muscles in the inner ear (which are often hypotonic in kids with DSI,

and therefore not functioning as well) and causes the child to pay

closer attention to the sounds coming in...the theory is that this

improves the child's ability to understand sounds. As the child

improves, different music/nature sounds are added to the mix to

broaden the child's exposure to various frequencies. Since defensive

behaviors are often the result of the child's inability to understand

sensory information (we fear what we don't understand), this will

(theoretically) bring down the overall defensive response.

Another thing that has been documented to help people with auditory

defensiveness is magnesium supplementation. is calmer when

taking magnesium. Can't remember the exact mechanism, but it has to

do with metabolism of neurotransmitters, I think...possibly because

magnesium is needed for adequate calcium metabolism...can find it if

you are interested.

It's important to take down the sensory load on defensive kids as

much as possible...which in this case means making sure that the

dishwasher, washing machine, radio, etc, are not all going full blast

simultaneously...and that the child is forewarned ( " Vaccuum cleaner;

big noise " ) when sounds that may be difficult to deal with are

coming. The less info I have to contend with, the better my chance

of understanding what I am taking in...information overload always

puts a person in defensive mode, and it will impact the person's most

vulnerable system--in ' case, that's auditory.

I spend a lot of time identifying sounds for , recognizing that

he doesn't have the ability to generalize information, so " everyday "

sounds that should be ignored by now are still a problem for him.

For example, the noise coming out of the air vent during hot weather

is different from the noise coming out of that same vent during cold

weather, and he can't make that connection (hot weather means air

conditioner will kick on instead of heater), so he is constantly

surprised by it....he will now come to me, look anxiously back and

forth between me and the offending vent, and wait for an

explanation. Simple as " that's the air conditioner...it sounds

different, but it's okay " calms him down.

puts a sound with a specific situation...so the air vent in

the living room during the day is a totally different beast than the

one in the bedroom at night. He also has trouble with visual

identification of things when lighting changes...I think he memorizes

the configuration of the parts of an object, so when the angle or

brightness changes that, he can't tell it's the same thing. This

makes it hard for him to " expect " the same sound from the same

object. Again, identifying...take out the fear factor, and you

reduce the defensive reaction.

We are so used to quickly assessing information and categorizing it

that we don't even notice many things that are very hard for kids

with sensitive hearing. My older son recently pointed out to me that

hot water sounds different coming out of the tap than cold does.

Who'da thunk such a small thing could bother a child? But it

does...and we have to honor their sensory experience as just as valid

as ours. Much of dealing successfully with any type of defensiveness

is trust, IMO.

Does that help?

Raena

[Guest guest]

Thank you for all the great information, Raena. I will bring up the

listening program to 's OT. About magnesium supplements, how much

should a child take every day? weighs 57 lbs. Again, I thank you

for such a clear, comprehensive answer to my questions. Are you free

Monday morning at 9:45 am to come to 's IEP meeting?

Maggie

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

>>>>>>>>

I do not know how to resolve this dilemma. Enrique feels that his siblings

must change as he cannot.

<<<<<<<<

The only suggestion I have at this point, and I feel Enrique is old enough,

is that he has to accept that people will not change for him. Not his

siblings, and especially not the outside world.

He MUST continue to learn to calm himself down. Could the two of you create

a space that is his, and his alone, where he can go to regroup? I wouldnt'

think it would have to be an entire room, just a place where he can have or

do something that he associates with calmness. Siblings would be forbidden

to enter this place.

That's all I have at the moment.

I'm sorry Salli, it sounds VERY aggravating.

Penny

[Guest guest]

Dear Raena:

This was such a brilliant and comforting response that you posted (you and

Jacquie H. were the two I most hoped to hear from; you because so much of

what goes on when Enrique does " all the wrong stuff " is sensory based and

Jacquie because, well, she apparently IS Enrique, but all grown up and

reasonably well-adjusted and if I could just get Enrique to see that it is

possible even for him....).

I wrote a lengthy response to your message which the computer ate before I

could press " Send. " Boo, hiss. And Enrique consoled me by saying, " Don't

you ever save? " No. I seldom do. I rely on the speed of my typing to just

do it all over, but I was so discouraged by losing that response and also a

long message that I typed yesterday when I first thought of trying to catch

up that I haven't posted much at all. But today I am saving madly! (And

Hallelujah to that cuz just as I was finishing this message, the computer

zapped it again. I should listen to Enrique more....)

I read your response to both Enrique and . and I went in

to the computer room and shut the door and I tried to explain to Enrique to

him. When he is not mad, he does kind of get it, but, well, you know the

rest...

> I have a (much) milder version of this going on at my house a big

> chunk of the time, so have some thoughts that may or may not

> apply...feel free to ignore any and all:

As IF!

>

> 1. 's comments reminded me of something that happened with

> Elaine the other day. Her response?

>

> " He ALWAYS cries, Mom. He cries because he's spoiled. "

>

> Hm. Not my interpretation. He cries because he has severe auditory

> defensiveness and slamming a door beside his head causes real live

> pain. But " spoiled brat " is how *she* sees it. He " gets away with

> everything " ...and she must follow rules. This is a source of intense

> resentment for her,

Oh, yes, so true. " Why " says , angrily, " Do I have to behave

better than him? I am younger than he is. Why does he have to be such a

baby? " My response is, of course, that people who CAN behave better

probably should. He simply cannot believe that Enrique can't do better than

he does. He would just like politeness, actually. And so would I, but...

because she doesn't understand his disability and

> can't bear to learn anything about it (frightens her and makes her

> sad). She is also terrified that at some point in her life, she will

> have to take care of him...that he will continue to ruin her life.

>

I don't think has thought about that possibility. I think he

believes that both Putter and Enrique will be self-supporting and

independent. I very much hope so too, but I am aware that this is NOT a

given. Sigh. I realize that it probably is with , barring a miracle,

but uncertainty is painful too.

> Siblings of kids with sensory processing differences live with a kind

> of stress that is unlike any other, and I think that as parents our

> job is trying to teach them their place in all of this, and that we

> do recognize that all the craziness that goes with a spectrum sib is

> just as tough on them as it is on the disabled child.

SO appreciated your writing this.

>

> There is also a concern in my mind that most certainly is

> aware that she resents him, and has no tools to deal with it...so he

> pesters her, either trying to make friends or to make sense of what

> her actions and tone are telling him.

Yes, Enrique says everyone hates him but me. Putter is quite firm about

shutting doors and running away from him when he is in a state, and Enrique

HATES it. He threw a box of kleenex at Putter the other day because when

Enrique was screaming, Putter slammed the door to the room that Putter was

playing in. He hates to think that Putter is afraid of him (and so he threw

kleenex at him so that Putter would feel safer, yeah, right....) A box of

kleenex is not terribly dangerous but we have had throwing incidents that

were in this house and YOU WOULD THINK HE COULD REMEMBER THAT!

It's a cycle that goes on and

> on...just as you describe in your note. The main problem is that

> they are all children...and we are asking them to deal with

> situations that most adults don't have adequate strategies for.

And appreciated this part too. He's just a kid. If he could keep

away from Enrique in a state, I would be satisfied.

And

> as few strategies as our NT kids have, our disabled kids have even

> fewer. It's lovely, isn't it?

Ah, and THIS is what we talked about a bit at this point. He listened. I

can't say he was convinced. But he didn't argue.

>

> 2. One thing that really jumps out at me in your note is Enrique's

> frantic pleas for silence...has he ever been treated for auditory

> defensiveness? I'm thinking magnesium and calcium supplements....and

> auditory therapy (like Vital Sounds program). If you can get the

> defensiveness down, he should be able to cope much better. Would he

> buy into trying any of these things?

Oh, dear, I wish he would and I will try again, but he hates doing ANYTHING

that might help. Well, frankly, he hates doing anything that takes trouble.

Could he tolerate wearing

> headphones for 20 to 30 min twice a day if he knew it might help his

> hearing be less sensitive? If there is an OT or SLP in your area

> trained in this, I would make it top priority...could make a huge

> difference.

Putter's OT would be marvelous. And she has tried. The school's OT who is

FREE seemed very competent and she tried. But no dice. And yet I cannot

just give up because Enrique has such huge sensory issues and they are

ruining his life in this big noisy family of mine.

>

> 3. Theory of mind (Enrique feeling that everyone MUST understand

> what he is thinking simply because he is thinking it) is a big

> problem here, too...dunno what you do about that.

Me either.

Is

> willing to learn enough about it to get to the point where he can

> begin to talk to Enrique calmly when things like this happen? I'm

> not saying he can---Mark can't do it. But the sad fact is that

> Enrique is probably right...he can't do better than he is.

Well, was happy to hear that Mark can't do it either as he hates

to feel that he is incompetent, but I do not truly know if he can do it or

not. We will keep working on it.

>

> 4. The snowball (avalanche?) effect of one kid setting off another

> is such a huge problem...we go through stages where it is almost

> unbearable. I deal with it by putting people in separate rooms, and

> by coming down on those who refuse to abide by my instructions to go

> to neutral corners. This is mainly a stitch in time issue, in my

> mind...giving people tools to stay level before things get ugly (not

> always successful...not by a long stretch).

Yes, this is much what I do too, and, no, it isn't successful all the time.

But sometimes it prevents bloodshed...

>

> I don't know if you have the time or not, but it was genuinely worth

> the effort to go through the process of figuring out who is a tactile

> organizer, who needs sound, who needs movement, and so on...this is

> the ALERT stuff.

I don't know if I have time or not, but it sounds like something I should

do. Putter brought home a flyer in his backpack offering a summer program

that I could sign him up for that was based on ALERT. It was expensive and

I think it conflicts with Putter's school and Enrique needs it more, oh,

well.

I can explain to you how to do this if you are

> interested...

Yes, I am.

>

> 5. I use time ' respite worker is here to take the three older

> kids out, one at a time, for some intense MOM time...an activity of

> their choice where they have my undivided attention. I think it

> really helps, because it tells them that even though demands

> an unfair share of my attention, they are important, too.

This is pretty hard for me to do, though Enrique and do have

opportunities when the others are in school. Sophie probably gets it the

least but she gets a lot of one on one time from Lou, whether or not that is

healthy I don't know, but usually I am just grateful that he gives her all

that time.

>

> 6. There is also the double whammy of these kids being

> teens...studies have shown recently that teenagers require

> significantly more time to process emotional cues than either

> children or adults...it's a time of intense neural reorganization,

> and something has to give...so all of them, NT or not, are trying to

> deal with each other during a time when none of them have the ability

> to recognize cues from each other that would let them know that the

> other person is upset in time to modify their actions and avoid a

> confrontation.

Oh, this is great. Well, I guess it is better to be informed.

>

> Fun, huh?

>

Oh, yes, but thanks so much, Raena.

Salli

>

>

>

>

>

>

>

>

>

>

[Guest guest]

>

> The only suggestion I have at this point, and I feel Enrique is old

enough,

> is that he has to accept that people will not change for him. Not his

> siblings, and especially not the outside world.

>

Actually the outside world will probably be BETTER than his siblings. But

he doesn't want contact with the outside world.

I've tried to safe space stuff. It's not, as they say in the Pokemon game

he is currently playing, very effective. He also must have me go with him

and then we talk, hysterically at first and later calmer and things improve.

Salli

[Guest guest]

Calgon?

I sympathize, because Dillon tortures Boone then gets himself worked up as

well. I wish I had some suggestions.

Sissi

[Guest guest]

Calgon?

I sympathize, because Dillon tortures Boone then gets himself worked up as

well. I wish I had some suggestions.

Sissi