Re: Fearful of things new, changed or out of the ordinary

[Guest guest]

hi pam-

first off, i am happy to hear that your daughter agreed to the zoloft. what was

it that you did that made her open up to trying the med? how long has it been

and have you noticed any changes?

i am hoping for you that once the zoloft begins to work, then she won't be as

startled, or fearful about the " new things " . has the therapists you have seen

offered any self-calming exercise? like breathing? i understand this sounds

simple, but it gives times to change focus on the internal. i also understand

that self-calming breathing must be practiced for much time before effectively

used.

i am also wondering about her starting school again and if the school is

offering a transition plan, since she has been uncomfortable at school in the

past. are you able to go and stay with her the first few days?

regards, melody

>

> My daughter is so fearful (almost to panic sometimes) over things

> that are out of the ordinary. If she is at school and sees garbage at recess

this scares her, if sees a person that has some disability that

> she hasn't seen before this may scare her, if she sees a dead animal

> in the street this would scare her greatly. (she is on zoloft).

>

> How do you address this? The many therapists I have worked with even OCD

> experts just focus me back to behavioral methods that keep

> her engaged and not avoidant. They have not suggested

> any ways to have hear cope better with change or novelty.

>

> She needs some way to cope with out of the ordinary things

> for times I am not with her so she is more comfortable

> with her Dad and with being at school.

>

> I would appreciate any ideas you have.

>

> Pam

>

[Guest guest]

Hi Melody, I hope your daughter is having a good summer.

To finally get my daughter over her intense fear of medication I changed

doctors. The new psychiatrist had about 4 sessions with her

where they just talked about her hobbies and then slowly

about medication. When we see the pschiatrist now they talk about

my daughters hobbies mostly.

The other thing I have been working with a behaviorist from the

Yale Parenting and Conduct Clinic CT (on the phone). It is not considered

therapy so we pay out of pocket $75 a week. The

behaviorist I work has been so helpful. One change was to

not give any response to her fearful or demanding statements.

But to give lots of praise and stickers for cooperation. I keep a chart and I

have to mail it to Yale once a week and show them I am

doing as they say. The rewards they say have to be a mix not just money. The

points have to add up to 100 pt (about a week) to

get small prizes total worth about $10, but a mix, some prizes are 30 minutes of

a game with Mom or 30 minutes extra of TV.

For school, Yale is going to work with the school Director.

Yale doesn't want her overwhelmed they want her started

at 1 hour or less but to have her walk in calmly without

any proding or prompting. They want to just shape that

one behavior before they move on. No throwing her into

the deep end of the pool. I feel confident about this strategy but I am not sure

she will have the stamina to manage a full day and

an hour commute each way. But we will take it one step at a time

and see if the zoloft makes any difference with reducing fatigue.

We are only at 25mg some kids need to go as high as 150mg to really

reduce anxiety so I don't know how long it will take. She has only

been on it two weeks so far I don't see any difference at all.

Her doctor already said to increase it again by 10mg. But I would

rather take it slow and not see any negative side effects.

How is your dauhgter?

Pam

> >

> > My daughter is so fearful (almost to panic sometimes) over things

> > that are out of the ordinary. If she is at school and sees garbage at recess

this scares her, if sees a person that has some disability that

> > she hasn't seen before this may scare her, if she sees a dead animal

> > in the street this would scare her greatly. (she is on zoloft).

> >

> > How do you address this? The many therapists I have worked with even OCD

> > experts just focus me back to behavioral methods that keep

> > her engaged and not avoidant. They have not suggested

> > any ways to have hear cope better with change or novelty.

> >

> > She needs some way to cope with out of the ordinary things

> > for times I am not with her so she is more comfortable

> > with her Dad and with being at school.

> >

> > I would appreciate any ideas you have.

> >

> > Pam

> >

>

[Guest guest]

>

> The other thing I have been working with a behaviorist from the

> Yale Parenting and Conduct Clinic CT (on the phone). It is not considered

therapy so we pay out of pocket $75 a week. The

> behaviorist I work has been so helpful. One change was to

> not give any response to her fearful or demanding statements.

> But to give lots of praise and stickers for cooperation. I keep a chart and I

have to mail it to Yale once a week and show them I am

> doing as they say. The rewards they say have to be a mix not just money. The

points have to add up to 100 pt (about a week) to

> get small prizes total worth about $10, but a mix, some prizes are 30 minutes

of a game with Mom or 30 minutes extra of TV.

This sounds so nice. I wish I could afford such a thing. I know, whine, whine.

Seriously though, do you mind sharing some of their advice? This is very

similar to what my son's OT did with us, but he wouldn't work with us long term.

Not really his job, I guess. So, I'm familiar with what you are doing.

What I'm curious about is what they think the 100 pts should get her every week?

Like how much money and how much of your time doing things she wants? Your

daughter is of similar age to my sons, so I figure it would be comparable. How

do you decide what types of things you should give her points for and what

things she should be expected to do " for free " ?

I'm glad you brought this up, because I've been kind of spinning my wheels this

summer, and this reminds me that maybe we go back to this, or something similar,

again. I finally got help for my son for school, but I'm still overwhelmed at

how to help him with his activities of daily life at home that he is so behind

in. It is so hard when it is just you. My husband works against me and neither

one of the kids wants to be " fixed " either, so it is really an uphill battle. I

need to get a good plan together or nothing is ever going to happen.

By the way--to the person who suggested the AM and PM lists on the back of the

medicine cabinet--this is working wonderfully with my NT son (My Asperger son

still needs more hand-holding than this). I also put their chore list on there.

Lists never worked for either of them when they were young, but I think the NT

one is finally ready to use them. As stated in other posts, we're working on

teaching the Asperger one to use lists--it doesn't come naturally to him.

Anyway, it must be so nice to have someone to work with and take part of the

load off your shoulders. I really enjoyed it for the few weeks I had it. I'm

happy for you!

[Guest guest]

hi pam-

thank you. my oldest (NT) daughter is home from college for the summer so makes

things more wonderful and more complicated. my aspie megan has had good times

and bad this summer. we went to the beach for a week, to a place we go every

year, so familiar. it was terrible for her. she was angry and controlling and

threatening. i was never so happy to get back home. i have tried to keep

things easy for her this summer. she has daily chores and must earn screen

time. we were also working on her social skils with the help of a workbook i

purchased thru michelle winners website. there is a section about things that

make you fearful. this is where megan got angry and quit and won't do it

anymore. i am rethinking how to reintroduce it.

since may, i have been working with a homeopath who helped with megan's colitus

when she was an infant. he is a classical homeopath so treats the person not

the symptom. after megans reaction to paxil in march, her immune system seemed

was compromised so my goal was for her to get a boost. the homeopath, believed

he could help with her anxiety too if we find the right remedy. the first

remedy made megan more tense then ever, so we are on the second remedy for 3

weeks now, and seems to be doing nothing for her anxiety--i will ask the

homeopath what is next. i want to give the homeopath time to work but it has

been about two months and the anxiety is still present. i have an rx for prozac

sitting here. with a new school beginning august 13, i am uncertain about

starting more new things.

i am happy to hear you have found some support. i admire your ability to stick

to the rewards system. that takes alot of self discipline on your part and a

good memory. i look forward to hearing how things progress for your daugher and

how school goes for her.

regards, melody

> > >

> > > My daughter is so fearful (almost to panic sometimes) over things

> > > that are out of the ordinary. If she is at school and sees garbage at

recess this scares her, if sees a person that has some disability that

> > > she hasn't seen before this may scare her, if she sees a dead animal

> > > in the street this would scare her greatly. (she is on zoloft).

> > >

> > > How do you address this? The many therapists I have worked with even OCD

> > > experts just focus me back to behavioral methods that keep

> > > her engaged and not avoidant. They have not suggested

> > > any ways to have hear cope better with change or novelty.

> > >

> > > She needs some way to cope with out of the ordinary things

> > > for times I am not with her so she is more comfortable

> > > with her Dad and with being at school.

> > >

> > > I would appreciate any ideas you have.

> > >

> > > Pam

> > >

> >

>

[Guest guest]

I wonder why this stuff is scary to her? Can she tell you what bothers her about it?

Roxanna

"The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke

( ) Fearful of things new, changed or out of the ordinary

My daughter is so fearful (almost to panic sometimes) over things

that are out of the ordinary. If she is at school and sees garbage at recess this scares her, if sees a person that has some disability that

she hasn't seen before this may scare her, if she sees a dead animal

in the street this would scare her greatly. (she is on zoloft).

How do you address this? The many therapists I have worked with even OCD

experts just focus me back to behavioral methods that keep

her engaged and not avoidant. They have not suggested

any ways to have hear cope better with change or novelty.

She needs some way to cope with out of the ordinary things

for times I am not with her so she is more comfortable

with her Dad and with being at school.

I would appreciate any ideas you have.

Pam

An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps!

[Guest guest]

First my introduction...

Hello, I am new here but hopefully I have some good insights because my son is

recently diagnosed with Asperger's syndrome (age 12). Actually I have almost ALL

of the symptoms myself but nobody will diagnose me because I'm an adult...

Now to the subject, which is about learning to cope with the extreme

fear/discomfort...

Although cases are often different (i.e. my son and I don't have much fear of

garbage or soap bubbles), I do have fear of every little routine changing. I

broke down emotionally yesterday because my PDA and watch are both lost so I

have no way to be reminded when time to go somewhere or what I have planned. I

completely missed a mandatory therapy session without a clue until my wife asked

me how " it " went. (Wow I hate that confused feeling when this question pops up

because " it " must be important but I don't know what " it " is!)

I have some good and some tough experiences helping my son learn to cope with

the fear whether it was getting his hands sticky, changing routine, or because

someone moved his object that he hid. For myself, I have always hated when

people tried to help me learn to cope. Yes I really needed to learn, but I sure

resisted and argued. I felt misunderstood. I felt unimportant. I perceived their

efforts to show that the way I felt did not matter to them, or that they did not

believe that I really was suffering. Have you ever felt that your daughter kept

trying to convince you of something that you thought you already understood?

That's a sign that it might be happening. Much of what the experts are hopefully

teaching you is how to communicate. We (any ASD) don't communicate the same way

as others, even if we are smart as Einstein (my hero). That means that if you

have not worked out enough of those FTCs (Failure-Ta-Communicate issues), you

would be unsuccessful at reasoning with her. The solution is age-old. Start with

validating her statements (assuming she wants to talk about it). For example if

my son doesn't want to go to school that day, mom might jump right to the " why

you should want to go to school " . That would skip the first step [validate the

intention and possibly feelings driving it]. I find that the right questions

give him a chance to tell me why, and how he feels. 'Feeling' statements don't

come naturally, esp. for me and my son, so these take a lot of discussion and

practice. It helped me to start looking up words because I didn't remember

enough words that tell how I feel. I think restating will take a lot of

practice, too. I felt sooo frustrated because my mother or my wife would try to

guess what was wrong (and were not even close). I thought it should be obvious

by how I was acting and what I had said already but that doesn't work. In light

of having Asperger's all that time, it makes sense now that the body language or

all non-verbal language just did not work. I needed to say a complete sentence,

and she needed to learn the way I used words in order to restate with other

words what she understood. When the restating becomes fluent (getting

affirmative response from her), and the habit becomes normal, then you find a

new trust opens up. She will feel more comfortable telling you things you had

not thought of, concerning the fears. At this point I should note that many

parents have already worked out communication this far. I don't mean to judge

that anybody has not because you can have this but still see difficulties in

helping your child learn to cope. The biggest point here, though, is that exact

words are ultimately important to me as the aspie (I think 'aspie' is a peculiar

word but I like having shortcut terms Thousands of arguments since my youth

have been only about what exact words were said and what op (other person)

really meant. That is why communication is such a roadblock in learning to cope.

Once you are good at restating and understanding each other, talk about why. Not

" should " nor " shouldn't " nor " what would be better " , just why something is

troublesome. That also validates and helps you show you accept her. The more I

talked and believed op was listening, the more I focused on listening to myself

and saw what I could do differently that would be easier. Basically she will

solve her own problems, but perhaps not without feeling your support and

understanding. It would be HUGE if I could just not feel the anxiety anymore,

but I really don't need to get rid of that. I feel the need for my wife to

understand that. When I feel that she accepts my strong feeling then I move on

and realize that whatever happened is not the end of the world. At that point

the anxiety will be released easier. It will come back again, but now I know

that I can cope with it.

Keep in mind that sometimes diagnoses (or ppl referring to them) rely too much

on a patient's actions and not enough on the reason for the actions. In 'coping'

we learn not to eliminate the reason, but only the action or response (which was

getting in the way of lifestyle). If that seems cryptic then I just mean that it

is OK to have emotions and tendencies and fears. In fact, having Asperger's

myself, I am learning the hard way that I have no way to eliminate anxiety and

fear of myself. I can accept that first, then get on with learning to cope with

it.

I hope I don't offend anyone. I realize because of the different way I

communicate (for example being straight to the point) I have often done so. I

just want to offer help even if ppl might not want to hear it. In this group I

see just the kind of discussions that I have always wanted to be involved in but

seemed nobody around me wanted to talk about it.

Thank You and I wish you happy experiences! (more below about the comment)

[...]

> The Asperger expert I talked to recently is a very hard edge guy that

> has a basic philosophy that if the Asperger kid can't be reasoned with the

parent has to be strict and have the child obey them

> (this PHd doctor has an Asperger son hmmmmm). I went to the Yale

> Behaviorists in CT and they have been helping me with behavior but they don't

care about the bubbles and the soft touch stuff ...I guess they hope medication

will lessen these issues.

May I say that I love your comment about the " PHd doctor " :-)) I had many

issues with those type of doctors. Perhaps they have Asperger's. I think some

" experts " tend to let their own bias get in the way and specifically because

their own child has been diagnosed. In any case, I gave my 2 cents or $2 (or

hopefully $200 at least) on the subject of how to reason with the Asperger's

child. In my case in fact I struggle with it a great deal now, mostly because I

never heard of the syndrome until recently and thought I had to prove to the

world that there was such a disorder. I pushed the notion that I really was

different. Most people seemed to contradict themselves by telling me I'm not

different but proceeding the rest of the time to pick out everything I do

different and try convincing me to change it. I guess one good point is that the

bubbles and touch sensitivity are not " wrong " . They have more to do with

preference so go ahead and validate her concerns. It sounds good the way she

talks about it. If you keep discussing her concerns, in time she can learn to

cope better with the problem that arises when issues fall beyond her control. I

struggle with the difference between what is my responsibility (i.e. rinsing my

own sink) and what is not (i.e. rinsing your sink). That is not to say that she

doesn't have a good reason to rinse the sink after you when she uses it also,

but talking about that can help. As I talk about my frustration with a therapist

and I realize she does accept my sense of importance, then there's nothing left

for me to do but think about whether a " problem " is my responsibility or not

then decide how to react. I practice things like removing myself from the

situation (mentally and/or physically) so that I can let go of my urge to fix

the problem (i.e. rinse the sink for you).

Remember though, children are young and so it takes time [with or without

disorders] to understand social issues like responsibility. The best thing is to

be patient and try to keep communication open while they try to work out their

issues and decide new things important to them and what was not so important.

[Guest guest]

>

> I have some good and some tough experiences helping my son learn to cope with

the fear whether it was getting his hands sticky, changing routine, or because

someone moved his object that he hid. For myself, I have always hated when

people tried to help me learn to cope. Yes I really needed to learn, but I sure

resisted and argued. I felt misunderstood. I felt unimportant. I perceived their

efforts to show that the way I felt did not matter to them, or that they did not

believe that I really was suffering. Have you ever felt that your daughter kept

trying to convince you of something that you thought you already understood?

That's a sign that it might be happening.

Jeff, thanks for sharing this. This was very helpful to me, and it was thought

provoking. I can tell my son feels misunderstood and is offended by things I

say, but I can't figure out why or how to say things differently. I will try to

follow your advice.

> Start with validating her statements ... I find that the right questions give

him a chance to tell me why, and how he feels. 'Feeling' statements don't come

naturally, esp. for me and my son, so these take a lot of discussion and

practice. It helped me to start looking up words because I didn't remember

enough words that tell how I feel. I think restating will take a lot of

practice, too.

This is where I mess up. I can't figure out how to ask questions in a way that

won't offend my son. Do you have some specific examples of situations with your

son and questions you asked that enabled him to talk about his feelings?

> I needed to say a complete sentence, and she needed to learn the way I used

words in order to restate with other words what she understood. When the

restating becomes fluent (getting affirmative response from her), and the habit

becomes normal, then you find a new trust opens up.

How are you trying to get this to happen with your son?

> The biggest point here, though, is that exact words are ultimately important

to me as the aspie ... Once you are good at restating and understanding each

other, talk about why. Not " should " nor " shouldn't " nor " what would be better " ,

just why something is troublesome. That also validates and helps you show you

accept her. The more I talked and believed op was listening, the more I focused

on listening to myself and saw what I could do differently that would be easier.

Basically she will solve her own problems, but perhaps not without feeling your

support and understanding.

This is very insightful--again, thanks for sharing. I will try to keep this in

mind.

[Guest guest]

The touch seems to be sensory. Not sure about the other things like the bubbles left in the sink except that sounds really autistic (imagine that.) Hopefully, the meds will help with her anxiety and she can relax more with these odd things. I don't know that I get the "strictly obey the parents" thing. Isn't that sort of the problem with kids who have a disability? If they could mind their parents flawlessly, they wouldn't have problems. lol. And really, can NT kids do this? Without a whip being used?

My older ds used to have problems - odd problems, such as nobody could sing in the car and heaven forbid the radio guy says the time and it doesn't match the clock on the dashboard! Or if the dial went below half a tank of gas...watch out! He could not handle things on the walls either and for many years, we didn't have things on the walls because he would knock or rip them down, not allowed to have lamps in the house, etc. He had a thing about knives once as a toddler (talk about making me worry) where he just kept taking them and putting them in odd places for no obvious reason. He had to have all his food cold and later, started putting things in the refrigerator (like deodorant, pencils, etc.) My younger ds had fears - afraid of the noise the vac makes (still complains about it), he would run out of the room if certain commercials came on tv as well. He would watch certain shows from upstairs looking down - as if he needed to be a safe distance away. I think the bubble issue might be one of those kinds of things where they get something in their head and can't make it stop or else a sensory challenge is there that we can't identify.

As for not being "real" OCD, I really would not want to argue with a professional expert. lol. But a lot of our kids have overlapping issues which may or may not fit the profile of another dx/disability perfectly on it's own. It is not uncommon at all. A friend has an AS kid that had to wash his hands all the time - very OCD - and yet, he did not find it odd to have to do that. So again, is it real OCD or imagined? <g> And does that matter vs. finding him help for this? When you put autism into the mix, their perception of what is happening is markedly different. So I don't think they would appreciate that what they are doing is that odd compared to someone who can see that what they are doing is really odd.

When we have had to deal with OCD or depression in our ds's here, we have treated them as the actual problem despite the mix that autism puts with it.

Roxanna

"The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke

( ) Fearful of things new, changed or out of the ordinary

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> My daughter is so fearful (almost to panic sometimes) over things

>

> that are out of the ordinary. If she is at school and sees garbage at recess this scares her, if sees a person that has some disability that

>

> she hasn't seen before this may scare her, if she sees a dead animal

>

> in the street this would scare her greatly. (she is on zoloft).

>

>

>

> How do you address this? The many therapists I have worked with even OCD

>

> experts just focus me back to behavioral methods that keep

>

> her engaged and not avoidant. They have not suggested

>

> any ways to have hear cope better with change or novelty.

>

>

>

> She needs some way to cope with out of the ordinary things

>

> for times I am not with her so she is more comfortable

>

> with her Dad and with being at school.

>

>

>

> I would appreciate any ideas you have.

>

>

>

> Pam

>

Hot Deals at Dell on Popular Laptops perfect for Back to School

[Guest guest]

LOL about clocks. I have to make sure all our clocks are close to exactly the

same, impossible on the digital ones though. One day my DH unplugged the clock

in our son's room for some reason, then plugged it back in but did not reset it.

Well, of course this caused a ruckus when I brought him up for bed. I think he

had nightmares about blinking clocks, the first thing out of him mouth in the

morning was about the blinking clock, and then began the ritual of going around

to every clock to make sure it hadn't started blinking.

He now asks people what time their watches say so he can check it against a

clock....It's enough to make me want to take all the clocks out of the house!

TJ

>

>

> The touch seems to be sensory.? Not sure about the other things like the

bubbles left in the sink except that sounds really autistic (imagine that.)?

Hopefully, the meds will help with her anxiety and she can relax more with these

odd things.? I don't know that I get the " strictly obey the parents " thing.?

Isn't that sort of the problem with kids who have a disability?? If they could

mind their parents flawlessly, they wouldn't have problems.? lol.? And really,

can NT kids do this?? Without a whip being used??

>

> My older ds used to have problems - odd problems, such as nobody could sing in

the car and heaven forbid the radio guy says the time and it doesn't match the

clock on the dashboard!? Or if the dial went below half a tank of gas...watch

out!? He could not handle things on the walls either and for many years, we

didn't have things on the walls because he would knock or rip them down, not

allowed to have lamps in the house, etc.? He had a thing about knives once as a

toddler (talk about making me worry) where he just kept taking them and putting

them in odd places for no obvious reason.? He had to have all his food cold and

later, started putting things in the refrigerator (like deodorant, pencils,

etc.)? My younger ds had fears - afraid of the noise the vac makes (still

complains about it), he would run out of the room if certain commercials came on

tv as well.? He would watch certain shows from upstairs looking down - as if he

needed to be a safe distance away.? I think the bubble issue might be one of

those kinds of things where they get something in their head and can't make it

stop or else a sensory challenge is there that we can't identify.?

>

> As for not being " real " OCD, I really would not want to argue with a

professional expert.? lol.? But a lot of our kids have overlapping issues which

may or may not fit the profile of another dx/disability perfectly on it's own.?

It is not uncommon at all.? A friend has an AS kid that had to wash his hands

all the time - very OCD - and yet, he did not find it odd to have to do that.?

So again, is it real OCD or imagined?? <g>? And does that matter vs. finding him

help for this?? When you put autism into the mix, their perception of what is

happening is markedly different.? So I don't think they would appreciate that

what they are doing is that odd compared to someone who can see that what they

are doing is really odd.?

>

> When we have had to deal with OCD or depression in our ds's here, we have

treated them as the actual problem despite the mix that autism puts with it.?

>

>

>

>

>

> ?Roxanna

>

> " The only thing necessary for the triumph of evil is for good men to do

nothing. " E. Burke

>

>

>

>

>

>

>

[Guest guest]

Jeff how do I handle this issue? Anytime my hands are positioned

with my first finger straight and my other fingers bent she

bites me or digs her nails in my hand. She says it looks weird.

Let's see the behaviorist will probably to tell me to tell her

to stop and give her a small punishment for hurting me.

But any punishment in this mood will escalate her.

It happened again today at the grocery store. I was carrying

the groceries and she thougt it looked weird and dug her

fingers in my hand. I told her to stop and this makes her mad

she sys what did I do wrong? When I told her she hit me

so this makes no sense. I didn't talk again except to say

no computer time today. She still has the TV so it didn't

escalate her although she locked me out of the house but I have

the keys.

This aggressive behavior toward me is so odd that

no one wants to be with us. Not even my husband.

Further isolating the two of us more and more.

Medication is being trialed.

Do you have any ideas on this. Can you give me an example

of how you would handle it?

thanks

Pam

t she she fgdShe finds

> [...]

> > The Asperger expert I talked to recently is a very hard edge guy that

> > has a basic philosophy that if the Asperger kid can't be reasoned with the

parent has to be strict and have the child obey them

> > (this PHd doctor has an Asperger son hmmmmm). I went to the Yale

> > Behaviorists in CT and they have been helping me with behavior but they

don't care about the bubbles and the soft touch stuff ...I guess they hope

medication will lessen these issues.

>

>

> May I say that I love your comment about the " PHd doctor " :-)) I had many

issues with those type of doctors. Perhaps they have Asperger's. I think some

" experts " tend to let their own bias get in the way and specifically because

their own child has been diagnosed. In any case, I gave my 2 cents or $2 (or

hopefully $200 at least) on the subject of how to reason with the Asperger's

child. In my case in fact I struggle with it a great deal now, mostly because I

never heard of the syndrome until recently and thought I had to prove to the

world that there was such a disorder. I pushed the notion that I really was

different. Most people seemed to contradict themselves by telling me I'm not

different but proceeding the rest of the time to pick out everything I do

different and try convincing me to change it. I guess one good point is that the

bubbles and touch sensitivity are not " wrong " . They have more to do with

preference so go ahead and validate her concerns. It sounds good the way she

talks about it. If you keep discussing her concerns, in time she can learn to

cope better with the problem that arises when issues fall beyond her control. I

struggle with the difference between what is my responsibility (i.e. rinsing my

own sink) and what is not (i.e. rinsing your sink). That is not to say that she

doesn't have a good reason to rinse the sink after you when she uses it also,

but talking about that can help. As I talk about my frustration with a therapist

and I realize she does accept my sense of importance, then there's nothing left

for me to do but think about whether a " problem " is my responsibility or not

then decide how to react. I practice things like removing myself from the

situation (mentally and/or physically) so that I can let go of my urge to fix

the problem (i.e. rinse the sink for you).

>

> Remember though, children are young and so it takes time [with or without

disorders] to understand social issues like responsibility. The best thing is to

be patient and try to keep communication open while they try to work out their

issues and decide new things important to them and what was not so important.

>

[Guest guest]

>

> It happened again today at the grocery store. I was carrying

> the groceries and she thougt it looked weird and dug her

> fingers in my hand. I told her to stop and this makes her mad

> she sys what did I do wrong? When I told her she hit me

> so this makes no sense. I didn't talk again except to say

> no computer time today.

Pam, I wouldn't punish her if she doesn't understand what she did wrong. If she

is like my son, she thinks you understand it all without being told. He's never

really been able to articulate this odd behavior stuff either.

She probably thinks you know it looks weird just like she does. Hitting you

probably has something to do with that. Since she thinks you know it just like

her, she thinks you're messing with her head when you try to say something

different. What does she say when you tell her it is wrong to bite other

people? Can you discuss the idea of her telling you to move your hand instead

of biting you?

I like Jeff's idea of just trying to get her to express herself and bounce it

back at her. Then discuss why it is a problem without suggesting any solutions

or consequences. If she is like my son, she won't be able to see your point.

If I were to tell my son I don't like being bitten, that people think it is odd,

etc. (if this were one of his behaviors), he would say something to indicate

that this isn't so, that I'm nuts or a liar, and there would be no convincing

him. But maybe it would be different if we could somehow come to some

understanding of their behavior, how they feel, etc. Maybe like Jeff says, they

would be able to move on then. Maybe she just wants to be understood?

I wonder if your hand position is something out of place, like the garbage on

the playground or bubbles lingering in the sink? It is like somehow these

things have an exaggerated, nightmarish effect on her emotions, kind of like the

imagined monster under the bed with little kids. Do you think it could be

something like that?

I'm totally just throwing ideas out here...

One thing that has started happening in the last year or so is that my son has

started saying that he thought weird thoughts when he was little but now he

doesn't. He speaks of himself as being a new person. He says he has embraced

his " inner OCD " and he is thinking about embracing other inner things that he

can't so far. Maybe you will find it encouraging that your daughter will get to

this point too. They do grow up!

[Guest guest]

Jeff, Ruth ..

so she has this triggers:

soap bubbles in the sink

waiting in lines

using my index finger for keyboarding or anything

And then she impulsively hits me or bites me or is we are

waiting she is combing her hands thru my hair aggressively

trying to calm herself but tugging on my hair.

I guess you and Jeff are saying validate that the things

that bother her more and problem solve with her.

Engage her.

I'll try that when she is calmer.

thanks

Pam

> >

> > It happened again today at the grocery store. I was carrying

> > the groceries and she thougt it looked weird and dug her

> > fingers in my hand. I told her to stop and this makes her mad

> > she sys what did I do wrong? When I told her she hit me

> > so this makes no sense. I didn't talk again except to say

> > no computer time today.

>

> Pam, I wouldn't punish her if she doesn't understand what she did wrong. If

she is like my son, she thinks you understand it all without being told. He's

never really been able to articulate this odd behavior stuff either.

>

> She probably thinks you know it looks weird just like she does. Hitting you

probably has something to do with that. Since she thinks you know it just like

her, she thinks you're messing with her head when you try to say something

different. What does she say when you tell her it is wrong to bite other

people? Can you discuss the idea of her telling you to move your hand instead

of biting you?

>

> I like Jeff's idea of just trying to get her to express herself and bounce it

back at her. Then discuss why it is a problem without suggesting any solutions

or consequences. If she is like my son, she won't be able to see your point.

If I were to tell my son I don't like being bitten, that people think it is odd,

etc. (if this were one of his behaviors), he would say something to indicate

that this isn't so, that I'm nuts or a liar, and there would be no convincing

him. But maybe it would be different if we could somehow come to some

understanding of their behavior, how they feel, etc. Maybe like Jeff says, they

would be able to move on then. Maybe she just wants to be understood?

>

> I wonder if your hand position is something out of place, like the garbage on

the playground or bubbles lingering in the sink? It is like somehow these

things have an exaggerated, nightmarish effect on her emotions, kind of like the

imagined monster under the bed with little kids. Do you think it could be

something like that?

>

> I'm totally just throwing ideas out here...

>

> One thing that has started happening in the last year or so is that my son has

started saying that he thought weird thoughts when he was little but now he

doesn't. He speaks of himself as being a new person. He says he has embraced

his " inner OCD " and he is thinking about embracing other inner things that he

can't so far. Maybe you will find it encouraging that your daughter will get to

this point too. They do grow up!

>

[Guest guest]

>

> Jeff, thanks for sharing this. This was very helpful to me, and it was

thought provoking. I can tell my son feels misunderstood and is offended by

things I say, but I can't figure out why or how to say things differently. I

will try to follow your advice.

>

Good, that's optimistic

I realize it will still be difficult, if for no other reason than he will never

actually 'think' the same way you do (barring being cured, of course). So the

thing to remember is that it's a matter of improving communication skills--by

both of you. As the Aspie I practice toning down my obsessive nature by choosing

a different goal that might be more reachable. For example I struggle because my

goal was to convince op to agree with me (not simply saying " I see " because I

don't believe it unless proven by a convincing example). If I realize it I can

make a new conscious goal to try to understand their point of view instead. It

distracts me from the unrealistic goal.

You will notice that this is something he can do rather than you, so your job as

parent can be to help him become aware of this possibility. That is where

communications skills come in. When I was frustrated that my mom or teacher did

not understand me, I simply did not realize that they could not know what I knew

because they were not here with me (experiencing the same thing I was, or being

conscious inside my head). I like that " breakthrough " article discussed earlier

because it helped me understand that more even if only analytically. Now I don't

remember what it was but when I was younger my doctor said something that made

me stop and think. You would want to say something that might provoke him to

stop trying to convince you for a moment, and think about whether he could ask

you something to understand your point of view better. Of course you could not

say that directly or he may be defensive because it would imply he was missing

something. Psychologically, it needs to be a statement revealing yourself so

that it is not offensive toward him. Perhaps the thing that helps me as Aspie is

when someone admits that they are trying to understand me, but they do not have

my experience. Then a pause is helpful. If he has trouble pausing to think,

perhaps it would help if you had something to do for a moment and want to

continue the conversation in a few minutes. I wonder, at the point where he

seems frustrated, how would he respond if you try that? Of course I'm not a

trained counselor so my apologies if you try something I suggest and it turns

into chaos ;-) Remember if something starts to generate too much steam, a quick

apology helps bring you out of trouble. Not necessarily even knowing what was

going wrong, just saying, " I'm sorry if I said something wrong, I don't mean to

offend anyone " .

> > Start with validating her statements ... I find that the right questions

give him a chance to tell me why, and how he feels. 'Feeling' statements don't

come naturally, esp. for me and my son, so these take a lot of discussion and

practice. It helped me to start looking up words because I didn't remember

enough words that tell how I feel. I think restating will take a lot of

practice, too.

>

> This is where I mess up. I can't figure out how to ask questions in a way

that won't offend my son. Do you have some specific examples of situations with

your son and questions you asked that enabled him to talk about his feelings?

>

I prefer phrases like 'feel lost' rather than 'mess up' because I don't think it

really is messing up if you have good intentions as the parent. In parenting it

is not so much what you do, as why you do it. [i feel that a safe rule because

although there are some actions that will always be " the wrong thing to do for

your child " , that actually means there was no good reason to do it so you will

never do it if you have good intentions. Therefore focus on being more aware of

your intentions and you gain power to free yourself of feeling guilty or

thinking you're a failure.

Think of it as a two-way understanding, not only you understanding him. Most of

it I explain earlier. Remember also that a young child would not understand you

as easily in any case (because they haven't the experience yet), and it gets a

little harder with Asperger's syndrome in the works. Perhaps the simplest

effective retry starts with, " I want to understand " . He still might have trouble

realizing your meaning that you lack understanding because your point of view is

different. Sometimes you might be struggling with your own pride/ego. It might

be difficult to admit to him that you simply cannot see what he means. Just

being able to say that out loud more often might help him relax and give you a

little more room. After all, we Aspies are sensetive to op feelings :-) Just

sometimes logically we missed or ignored the thought that the person I'm arguing

with might feel vulnerable. Once your son focuses on understanding you, he might

feel that you are beginning to understand more. Also, your example of good

communication will eventually rub off on him. It may take a while but he will

learn to express himself better using words. Then you will find it 'magically'

easier to restate what he means.

> > I needed to say a complete sentence, and [my wife] needed to learn the way I

used words in order to restate with other words what she understood. When the

restating becomes fluent (getting affirmative response from her), and the habit

becomes normal, then you find a new trust opens up.

>

> How are you trying to get this to happen with your son?

>

I have to admit that being over 30 helps me a lot to use more effective

sentences, but I still have trouble getting my ds to speak clearly at all let

alone improve sentences to get his point across. He's 12 and I think that's the

magic age where he's taking off with communication. Of course his therapy might

be helping too Recently he entered the room and when he saw me, he gave a

big smile that looked real. It surprised me because I didn't remember seeing

that before! So he is improving.

One thing that might differ with my parenting situation is that some parents are

NT and cannot therefore have the intuitive relationship I developed with my ds.

Still, I think I learned a lot watching how he interacted with his mom up to 3

(when she gave up and left), and his step mother the rest of the time (he's 12).

To work with his verbal skills I started by talking to him about relationships

(i.e. understanding each other, being understood, telling people how we feel) in

a vague approach. That is I didn't talk about our situation directly. Sometimes

I thought of examples to share. I really wondered if he was listening because I

had several sessions of talking and he never responded verbally to any of them.

We just walked around outside while I talked. I remembered that I always had

learned from other people's discussions by listening in when I was not even part

of the conversation, so I suspected he was processing everything I said. Later I

started to ask him short simple questions. They were things like how he felt

about one of those issues or whether he felt frustrated from one of his specific

experiences. His answers for a while were real short. First the only answer was

either " I don't know " or " I guess " . Sometimes just a sound (almost growl). I

didn't push him, but often I asked a different question designed to provoke more

than " I guess " , and having no " wrong " answer. I talked about that

sometimes--telling him that lots of questions don't have a wrong answer, but

just give me a chance to say what I think. In weeks he started to talk to me

more without being provoked on a subject. I learned that he had been listening

and was interested all along. Once he surprised me when he brought up something

I said long ago about having our own little world. I had told him that it helped

me relax sometimes when I went into my own world in my head. That was a place

where I could control things around me, and it was a nice quiet place. When he

brought it up, I perceived that he was using his 'own little world' to avoid an

experience that he could learn from. Since he brought it up, I found it a

perfect opportunity for me to reply, " Yes--and sometimes I find it very helpful

to go into another person's world or back to this world where mom is. I need to

go into their world so I can get something I need, or so they can understand

me. " I don't remember my exact words. He stopped and looked like he was

thinking hard about it. Here I was, somebody whom he trusted to understand his

need to withdraw to a safe place in his mind, but out of the blue I said I would

not want to stay there. In fact I said I can get something I need by leaving

that safety zone. It sort of shocked him into a new realization. Even though we

don't talk much about it, I have seen him try a little harder to relate with

other people.

He is much quieter than I think I was at that age with my own family. I think he

was a little more careful because his new step mom has a rather 'loud'

personality. When I got to know her I was not in the family loop yet and she

acted very shy. When I got in, I found that she is perhaps like the

sister-in-law in the discussion about insensitive family members. I felt like

she was overwhelming my children with all the loud scolding (which she said is

not yelling), accusing, loud play (crazy stuff--things broken and loud screams),

teasing (like telling the 2-yr-old an onion is an apple and letting him bite it

to see his face). I have seen things improve a great deal in both directions.

Mom was frustrated trying to get them to behave. I had thought all along that

they were trying to please her more than any child I had ever seen, but finally

she was wearing down and listened to my suggestion. When some big dramatic thing

happens, like parents to the point of separating, that is the time for us

parents to break down and listen to advice. I got both mom to go to therapy and

try to explain how her children are disobedient. As the counselor began to see

mom's point of view, she was able to begin helping mom see a new point of view

on things.

Well I said a lot of different things and sometimes ppl think I'm just rambling,

but I hope those things are helpful. Communication certainly is a big thing for

everyone to learn and doesn't happen easily because of our different experience

or focus. Working on it helps uncover all the other secrets of relationships.

Have fun! --jeffs

P.S. Did anyone figure out that the subject that I obsess about (intensified by

Asperger's) is psychology? When I learned that an Asperger's child will obsess

about a certain subject, I thought mine was obviously computers. I always

rambled about how a computer works inside and how it doesn't really think but it

copies the thinking pattern of it's programmer. Now I realize that it was the

person's way of thinking that I was comparing to a computer. I was intrigued by

the idea of programming " artificial intelligence " but I focused on describing

every aspect of human cognition and behavior, and the funny way that they

thought their computer was smart when it really cannot be. Just another tidbit

that I almost couldn't stop rambling about. I like typing too much

[Guest guest]

>

> Jeff, Ruth ..

>

> so she has this triggers:

>

> soap bubbles in the sink

> waiting in lines

> using my index finger for keyboarding or anything

>

> And then she impulsively hits me or bites me or is we are

> waiting she is combing her hands thru my hair aggressively

> trying to calm herself but tugging on my hair.

>

> I guess you and Jeff are saying validate that the things

> that bother her more and problem solve with her.

> Engage her.

>

> I'll try that when she is calmer.

>

> thanks

> Pam

Yes I like the things that Ruth throws out. I think she has a lot of insight to

help identify the cause of things!

It might bother other people that your daughter is trying to keep busy. It looks

like it would be quite difficult for her to ignore the things in her mind that

push her to do things that cause discomfort to others. But the most important

thing that jumps out at me is her words.

Words is all she's got! That's sort of what my therapist said to me (actually,

" Words are everything " . I wanted to argue that words were not important because

people didn't understand me anyway, and because people lie. In fact, I felt like

everyone else lied more often than they themselves were aware of. I thought the

reason people never believed me was because they knew they would lie about the

subject so naturally I must be lying. Pay attention to her words. In fact, not

really what you thought she means by the statement but *exactly* what she said.

It will help you realize that she is trying to tell you her confusion.

Apparently she does not know why you told her to stop. The punishment apparently

is not needed because she cannot " do something wrong " without knowing that it

was wrong. You can ask her what was wrong, and why she thinks you might have

said to stop. Of course the biggest thing to talk about is to express your

feelings. " When you bite me, I feel hurt. I don't like to be hurt " . If it leaves

a mark for a long time you can say you don't like that, or what the 'cost' is

from being hurt. The first impression for you is probably that you don't want to

hurt her back because you know she didn't understand. The next step is to use

words to help her understand. She doesn't have to show understanding right away,

but she will hear your words. When you only say " stop " and " no computer " , is

there something missing from that communication? She let you know that the thing

missing is, " When you dig your fingernails in my hand, it hurts me and I feel

sad. I want you to try hugging me and telling me what is wrong. "

What do you and she have that is between you and nobody else shares? The way you

explained it is the bites, digs, and pulling hair. Other people leave you two

alone because they don't understand that special relationship. Do you know how

she sees that special relationship? Somehow along the way, you have accepted

that she loves you very much, and you let her make a habit out of those things.

What you might not realize is if she sees that very action (i.e. biting) as

showing love to you. She is communicating.

The way she treats you is also a typical way to try to get your attention. How

well do you pay attention to her when she is not doing those things? My

youngest, 7, is my wife's only son. He's not ADS but possibly something else (I

think ADHD but someone suggested schizophrenia, yikes). Mom has learned to try

to ignore him because he is always active and demanding attention. He often

comes up to mom and grabs her face, pulling it hard until it is facing him, then

says what he wants to say. Looks funny but it can become annoying. I noticed she

does not say anything about it until she loses her temper and yells. When he did

it to me years ago, I knew right away I would not have this behavior be the

norm. I am quite sensitive to forceful touch and I like soft touch. I put my

hand on his and gently told him that he was hurting me, and I would like him to

get my attention a different way. You know what, he did. It may have took more

than one reminder, but now he only does it to mom. For me he just says, " Hey

dad " , and taps me if I don't respond to that. I love it, but I see that it would

take tons more work for mom to change the habit because it is much more deeply

entrenched between them. She has quite a co-dependency with him that fuels the

fire, and so she does benefit by the private therapy sessions where the talks to

a professional about parenting and her own feelings.

Well I hope this is helpful because it sure helps me, and I have seen it begin

to help my wife raise two step children and one of her own. The concepts are

much the same with NT or ADS in many cases, but the work can be more tedious

when the non-verbal communication is so lacking.

Have fun! --jeffs

[Guest guest]

lol, I used to dash into my parents house to check that the clocks were all set the same during visits.

Roxanna

"The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke

Re: ( ) Fearful of things new, changed or out of the ordinary

LOL about clocks. I have to make sure all our clocks are close to exactly the same, impossible on the digital ones though. One day my DH unplugged the clock in our son's room for some reason, then plugged it back in but did not reset it. Well, of course this caused a ruckus when I brought him up for bed. I think he had nightmares about blinking clocks, the first thing out of him mouth in the morning was about the blinking clock, and then began the ritual of going around to every clock to make sure it hadn't started blinking.

He now asks people what time their watches say so he can check it against a clock....It's enough to make me want to take all the clocks out of the house!

TJ

>

>

> The touch seems to be sensory.? Not sure about the other things like the bubbles left in the sink except that sounds really autistic (imagine that.)? Hopefully, the meds will help with her anxiety and she can relax more with these odd things.? I don't know that I get the "strictly obey the parents" thing.? Isn't that sort of the problem with kids who have a disability?? If they could mind their parents flawlessly, they wouldn't have problems.? lol.? And really, can NT kids do this?? Without a whip being used??

>

> My older ds used to have problems - odd problems, such as nobody could sing in the car and heaven forbid the radio guy says the time and it doesn't match the clock on the dashboard!? Or if the dial went below half a tank of gas...watch out!? He could not handle things on the walls either and for many years, we didn't have things on the walls because he would knock or rip them down, not allowed to have lamps in the house, etc.? He had a thing about knives once as a toddler (talk about making me worry) where he just kept taking them and putting them in odd places for no obvious reason.? He had to have all his food cold and later, started putting things in the refrigerator (like deodorant, pencils, etc.)? My younger ds had fears - afraid of the noise the vac makes (still complains about it), he would run out of the room if certain commercials came on tv as well.? He would watch certain shows from upstairs looking down - as if he needed to be a safe distance away.? I think the bubble issue might be one of those kinds of things where they get something in their head and can't make it stop or else a sensory challenge is there that we can't identify.?

>

> As for not being "real" OCD, I really would not want to argue with a professional expert.? lol.? But a lot of our kids have overlapping issues which may or may not fit the profile of another dx/disability perfectly on it's own.? It is not uncommon at all.? A friend has an AS kid that had to wash his hands all the time - very OCD - and yet, he did not find it odd to have to do that.? So again, is it real OCD or imagined?? <g>? And does that matter vs. finding him help for this?? When you put autism into the mix, their perception of what is happening is markedly different.? So I don't think they would appreciate that what they are doing is that odd compared to someone who can see that what they are doing is really odd.?

>

> When we have had to deal with OCD or depression in our ds's here, we have treated them as the actual problem despite the mix that autism puts with it.?

>

>

>

>

>

> ?Roxanna

>

> "The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke

>

>

>

>

>

>

>

An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps!

[Guest guest]

Well, I'm not Jeff or Ruth but I wouldn't chit chat about someone hurting me. When she starts biting, I would jerk away and say, "NO!" and not chit chat about it again. It's just "NO" Same with pulling my hair. Physically make her stop pulling your hair, yell "STOP!" Walk away. I'm not sure how she is getting all this traction into you? What do the yale people tell you to do when she starts biting you? My oldest ds used to football charge me when he was a toddler - out of nowhere, he'd just come running and smack headfirst into my gut. It only happened once before I change positions so he couldn't do it again, although he tried many times for a while. Eventually, he stopped when it wasn't working out for him. And he was 2 at the time and couldn't speak yet. No big discussion about feelings was necessary other than, "That hurts!" from me to him.

My other ds liked to sit behind me in a chair and "play" with my hair. Then it progressed to eating my hair and when he started eating, it was time to make him leave the position. Eventually, he learned he couldn't do that. It wasn't something we had to sit around and discuss, how do you "feel" about it, and all that. lol. It's simple, "You are hurting me, stop" and that's it. The little guy I worked with with severe autism often had actions that resulted in pain for me. I was not a slow learner, though, and I learned that as soon as he did the first step of the process, the rest was coming. So the objective was to switch gears and prevent getting hurt. If he was in a biting phase, you just automatically did not let his face get close to your arms or else you were going to get bitten. It was an easy lesson (for me!)

Later, if you want to talk to her about what happened and teach her to use words instead of biting, great and I would actually recommend doing it. But I would not be standing in the grocery store with bite marks, asking her how she is feeling. Give her a bracelet that she can wear and bite when frustrated or a stuffed animal she can smack around but not people and not her mom. Redirect her. But definitely let her know that biting you or pulling your hair is not an option. Find other options, talk to her about options she might consider worthy.

Does she do these things to anyone else besides you? Maybe you could have the yale people come and spend a few hours with you and her to work on these things? What does daddy do when he gets bitten?

Roxanna

"The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke

( ) Re: Fearful of things new, changed or out of the ordinary

Jeff, Ruth ..

so she has this triggers:

soap bubbles in the sink

waiting in lines

using my index finger for keyboarding or anything

And then she impulsively hits me or bites me or is we are

waiting she is combing her hands thru my hair aggressively

trying to calm herself but tugging on my hair.

I guess you and Jeff are saying validate that the things

that bother her more and problem solve with her.

Engage her.

I'll try that when she is calmer.

thanks

Pam

> >

> > It happened again today at the grocery store. I was carrying

> > the groceries and she thougt it looked weird and dug her

> > fingers in my hand. I told her to stop and this makes her mad

> > she sys what did I do wrong? When I told her she hit me

> > so this makes no sense. I didn't talk again except to say

> > no computer time today.

>

> Pam, I wouldn't punish her if she doesn't understand what she did wrong. If she is like my son, she thinks you understand it all without being told. He's never really been able to articulate this odd behavior stuff either.

>

> She probably thinks you know it looks weird just like she does. Hitting you probably has something to do with that. Since she thinks you know it just like her, she thinks you're messing with her head when you try to say something different. What does she say when you tell her it is wrong to bite other people? Can you discuss the idea of her telling you to move your hand instead of biting you?

>

> I like Jeff's idea of just trying to get her to express herself and bounce it back at her. Then discuss why it is a problem without suggesting any solutions or consequences. If she is like my son, she won't be able to see your point. If I were to tell my son I don't like being bitten, that people think it is odd, etc. (if this were one of his behaviors), he would say something to indicate that this isn't so, that I'm nuts or a liar, and there would be no convincing him. But maybe it would be different if we could somehow come to some understanding of their behavior, how they feel, etc. Maybe like Jeff says, they would be able to move on then. Maybe she just wants to be understood?

>

> I wonder if your hand position is something out of place, like the garbage on the playground or bubbles lingering in the sink? It is like somehow these things have an exaggerated, nightmarish effect on her emotions, kind of like the imagined monster under the bed with little kids. Do you think it could be something like that?

>

> I'm totally just throwing ideas out here...

>

> One thing that has started happening in the last year or so is that my son has started saying that he thought weird thoughts when he was little but now he doesn't. He speaks of himself as being a new person. He says he has embraced his "inner OCD" and he is thinking about embracing other inner things that he can't so far. Maybe you will find it encouraging that your daughter will get to this point too. They do grow up!

>

An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps!

[Guest guest]

>

> lol, I used to dash into my parents house to check that the clocks were all

set the same during visits.?

>

>

> ?Roxanna

>

>

> Re: ( ) Fearful of things new, changed or out of the

ordinary

>

>

> LOL about clocks. I have to make sure all our clocks are close to exactly the

same, impossible on the digital ones though. One day my DH unplugged the clock

in our son's room for some reason, then plugged it back in but did not reset it.

Well, of course this caused a ruckus when I brought him up for bed. I think he

had nightmares about blinking clocks, the first thing out of him mouth in the

morning was about the blinking clock, and then began the ritual of going around

to every clock to make sure it hadn't started blinking.

>

> He now asks people what time their watches say so he can check it against a

clock....It's enough to make me want to take all the clocks out of the house!

>

> TJ

>

He he, I am almost 40 and I still have trouble accepting that clocks be a minute

off. I learned how to set the digital ones. I sit and wait for my watch (which

shows seconds) to get to :59, then at the exact change I press the minute button

on the one I am setting so that it will reset it's own seconds even though it

does not display seconds. Analog clocks I unplug at 00 seconds so I can set and

wait until 00 to plug back in.

I had to borrow my father's analog watch a few weeks ago. I went crazy,

re-setting it several times a day. Eventually I got busy and forgot. I noticed

it was only two minutes off after two days, so I started to reason with myself

and let it go until it was more than 5 minutes off. That's a major

accomplishment for me but it took a while :-D

Of course I fret about my wife taking me somewhere if we are not 10 or 15

minutes early because I know her clock in the car is going to be wrong, or we

might hit an extra stoplight. Glad to have my watch back at least.

[Guest guest]

>

> Good, that's optimistic

> I realize it will still be difficult, if for no other reason than he will

never actually 'think' the same way you do (barring being cured, of course). So

the thing to remember is that it's a matter of improving communication

skills--by both of you. As the Aspie I practice toning down my obsessive nature

by choosing a different goal that might be more reachable. For example I

struggle because my goal was to convince op to agree with me (not simply saying

" I see " because I don't believe it unless proven by a convincing example). If I

realize it I can make a new conscious goal to try to understand their point of

view instead. It distracts me from the unrealistic goal.

Thanks again for your insight, Jeff. I'm struggling with figuring out realistic

plans of action as well as simply understanding. My son with Asperger is 14, by

the way. My big challenge this summer was to try to get him and his twin

brother doing more age-appropriate chores and routines, including things like

personal hygiene and eating meals like breakfast and lunch. Some things I'm

garnering from your thoughts...

1) Raise the idea of setting a goal to understand op point of view rather than

insisting they agree with him. Do this in an indirect way. Don't want to imply

that he is missing something.

2) Focus on both of us improving communication skills specific to understanding

each other.

3) Try admitting that I am trying to understand him, but I do not have his

experience. Then pause, if he is frustrated maybe do something else for a

minute and see if he wants to continue the conversation in a few minutes.

By the way, if I try to apologize and say I didn't mean to offend him, that

seems to set him off. I don't think he accepts that I don't know what he knows

yet, so he's skeptical. I think I still need to let him know, for clarification

if nothing else, but I do that later and only briefly. He is still struggling

through the theory of mind stuff. He's better than he was two years ago, but he

is still rather fuzzy on the mind boundaries.

4) Maybe he would relate to 'feel lost' rather than 'mess up'? This seems like

such a little thing, but I think you have something here. Like you say, exact

words are important. I think it is important to get the intention right.

Regarding your discussion on intentions--I wish my husband, kids, other family

and the people at the school could focus on intentions like this. I'm not sure

having good intentions is necessarily all that freeing if nobody around you

recognizes them.

5) Keep communicating that I cannot see what he means even though I don't get a

response.

I say that last because my son is still struggling with understanding the mind

boundaries. He is very skeptical and sometimes offended when I try to tell him

I don't know what he means. I don't think he believes me. Like I said it is

better. I'm not still arguing with him about how he has to verbally communicate

things to his teacher when she is right there. But he still expects me to know

things that I couldn't possibly know.

I enjoyed reading how your son has progressed with his communication. Mine has

progressed from automatic " I don't know " to at least short one or two word

answers after a pause. When he gets frustrated, instead of an automatic " you're

stupid " , he's progressed to " please stop talking " . So, we're still working on

initiating and maintaining conversations that are not of special interest.

Thanks for the great advice--I appreciate it.

> Think of it as a two-way understanding, not only you understanding him. Most

of it I explain earlier. Remember also that a young child would not understand

you as easily in any case (because they haven't the experience yet), and it gets

a little harder with Asperger's syndrome in the works. Perhaps the simplest

effective retry starts with, " I want to understand " . He still might have trouble

realizing your meaning that you lack understanding because your point of view is

different. Sometimes you might be struggling with your own pride/ego. It might

be difficult to admit to him that you simply cannot see what he means. Just

being able to say that out loud more often might help him relax and give you a

little more room. After all, we Aspies are sensetive to op feelings :-) Just

sometimes logically we missed or ignored the thought that the person I'm arguing

with might feel vulnerable. Once your son focuses on understanding you, he might

feel that you are beginning to understand more. Also, your example of good

communication will eventually rub off on him. It may take a while but he will

learn to express himself better using words. Then you will find it 'magically'

easier to restate what he means.

>

> > > I needed to say a complete sentence, and [my wife] needed to learn the way

I used words in order to restate with other words what she understood. When the

restating becomes fluent (getting affirmative response from her), and the habit

becomes normal, then you find a new trust opens up.

> >

> > How are you trying to get this to happen with your son?

> >

>

> I have to admit that being over 30 helps me a lot to use more effective

sentences, but I still have trouble getting my ds to speak clearly at all let

alone improve sentences to get his point across. He's 12 and I think that's the

magic age where he's taking off with communication. Of course his therapy might

be helping too Recently he entered the room and when he saw me, he gave a

big smile that looked real. It surprised me because I didn't remember seeing

that before! So he is improving.

>

> One thing that might differ with my parenting situation is that some parents

are NT and cannot therefore have the intuitive relationship I developed with my

ds. Still, I think I learned a lot watching how he interacted with his mom up to

3 (when she gave up and left), and his step mother the rest of the time (he's

12).

>

> To work with his verbal skills I started by talking to him about relationships

(i.e. understanding each other, being understood, telling people how we feel) in

a vague approach. That is I didn't talk about our situation directly. Sometimes

I thought of examples to share. I really wondered if he was listening because I

had several sessions of talking and he never responded verbally to any of them.

We just walked around outside while I talked. I remembered that I always had

learned from other people's discussions by listening in when I was not even part

of the conversation, so I suspected he was processing everything I said. Later I

started to ask him short simple questions. They were things like how he felt

about one of those issues or whether he felt frustrated from one of his specific

experiences. His answers for a while were real short. First the only answer was

either " I don't know " or " I guess " . Sometimes just a sound (almost growl). I

didn't push him, but often I asked a different question designed to provoke more

than " I guess " , and having no " wrong " answer. I talked about that

sometimes--telling him that lots of questions don't have a wrong answer, but

just give me a chance to say what I think. In weeks he started to talk to me

more without being provoked on a subject. I learned that he had been listening

and was interested all along. Once he surprised me when he brought up something

I said long ago about having our own little world. I had told him that it helped

me relax sometimes when I went into my own world in my head. That was a place

where I could control things around me, and it was a nice quiet place. When he

brought it up, I perceived that he was using his 'own little world' to avoid an

experience that he could learn from. Since he brought it up, I found it a

perfect opportunity for me to reply, " Yes--and sometimes I find it very helpful

to go into another person's world or back to this world where mom is. I need to

go into their world so I can get something I need, or so they can understand

me. " I don't remember my exact words. He stopped and looked like he was

thinking hard about it. Here I was, somebody whom he trusted to understand his

need to withdraw to a safe place in his mind, but out of the blue I said I would

not want to stay there. In fact I said I can get something I need by leaving

that safety zone. It sort of shocked him into a new realization. Even though we

don't talk much about it, I have seen him try a little harder to relate with

other people.

>

> He is much quieter than I think I was at that age with my own family. I think

he was a little more careful because his new step mom has a rather 'loud'

personality. When I got to know her I was not in the family loop yet and she

acted very shy. When I got in, I found that she is perhaps like the

sister-in-law in the discussion about insensitive family members. I felt like

she was overwhelming my children with all the loud scolding (which she said is

not yelling), accusing, loud play (crazy stuff--things broken and loud screams),

teasing (like telling the 2-yr-old an onion is an apple and letting him bite it

to see his face). I have seen things improve a great deal in both directions.

Mom was frustrated trying to get them to behave. I had thought all along that

they were trying to please her more than any child I had ever seen, but finally

she was wearing down and listened to my suggestion. When some big dramatic thing

happens, like parents to the point of separating, that is the time for us

parents to break down and listen to advice. I got both mom to go to therapy and

try to explain how her children are disobedient. As the counselor began to see

mom's point of view, she was able to begin helping mom see a new point of view

on things.

>

> Well I said a lot of different things and sometimes ppl think I'm just

rambling, but I hope those things are helpful. Communication certainly is a big

thing for everyone to learn and doesn't happen easily because of our different

experience or focus. Working on it helps uncover all the other secrets of

relationships.

>

> Have fun! --jeffs

>

>

[Guest guest]

>

>

> Well, I'm not Jeff or Ruth but I wouldn't chit chat about someone hurting

me.? When she starts biting, I would jerk away and say, " NO! " and not chit chat

about it again.? It's just " NO " Same with pulling my hair.? Physically make her

stop pulling your hair, yell " STOP! " ? Walk away.? I'm not sure how she is

getting all this traction into you?? What do the yale people tell you to do when

she starts biting you?? My oldest ds used to football charge me when he was a

toddler - out of nowhere, he'd just come running and smack headfirst into my

gut.? It only happened once before I change positions so he couldn't do it

again, although he tried many times for a while.? Eventually, he stopped when it

wasn't working out for him.? And he was 2 at the time and couldn't speak yet.?

No big discussion about feelings was necessary other than, " That hurts! " from me

to him.?

>

> My other ds liked to sit behind me in a chair and " play " with my hair.? Then

it progressed to eating my hair and when he started eating, it was time to make

him leave the position.? Eventually, he learned he couldn't do that.? It wasn't

something we had to sit around and discuss, how do you " feel " about it, and all

that.? lol.? It's simple, " You are hurting me, stop " and that's it.? The little

guy I worked with with severe autism often had actions that resulted in pain for

me.? I was not a slow learner, though, and I learned that as soon as he did the

first step of the process, the rest was coming.? So the objective was to switch

gears and prevent getting hurt.? If he was in a biting phase, you just

automatically did not let his face get close to your arms or else you were going

to get bitten.? It was an easy lesson (for me!)?

>

Yes, notice that immediate reaction can save a lot of long-term struggle. Just

remember that while the " NO " or yelling " STOP " and even " that hurts me " is a

normal way to raise children, sometimes it simply does not work. For me it was

because I guessed the wrong reason someone said that. I needed an exact

explanation before I understood, with sentences that do not only make simple

statements but explain why you said them. I did not get the body language like

leaving me or making me leave). That is called 'non-verbal' and it left me

bewildered as to why someone hates me so much. Even saying " that hurts " was not

enough if the child does not happen to connect that with " so if you will say

'excuse me' or tap me on the arm then I will be happy to listen to you " . Yeah I

know that is hard to comprehend if you do not have Asperger's syndrome but I

understand that limitation completely. And it is more difficult for some

children than others.

Having said that, I agree with Roxanna. The 'shock' needs to happen right then

if they don't take you seriously. The habit grows deeper and is harder to

correct the longer it is let go. And most importantly a punishment (whether it

is yelling or withholding privileges) will either harm or do nothing if the

child does not understand why. If NT they will show it in many ways. If Aspie,

listen closely to their words and believe they are serious when they say, " what

did I do wrong? "

I have no formal education in psychology--just high IQ, tons of observation with

tons of families both successful and dysfunctional, and my own Aspie experience.

Oh, most importantly I don't stop learning. Pride is what kept me from learning

in the past. " I already know, so why listen to this fool? " sort of thoughts. Now

I just listen and consider what everyone says.

Thank you for sharing, I apologize for sounding like there was no seriousness in

talking with my ds. The term " chit chat " is not in my vocabulary. I have

Asperger's syndrome. NOTHING I say is " chit chat " ! Thanks!

[Guest guest]

Roxanna thanks so much for the response. You and others

are helping me figure out if I have exhausted all I can do.

I do say " stop " and I try to distract her

with some other activity. With my hair I'll tell her only

two more touches and that quiets her a little. These are

all manifestations of anxiety about waiting or transitioning.

In school she feels this too, and probably contributes greatly

to her school phobia. When I stay in the school to get her

to stay, she is racking my hair and begging me to leave. It is

surprising the psychiatrist didn't want to use something

fast acting like klonopin or xanax, because we have a new

school to start at in the fall. But zoloft is what they started

her on.

The Yale folks are focusing on medication compliance and teaching her in general

to listen when I say something. And they are going to

talk to the psychiatrist in Sept when Yale University is

back at work. Yale's approach is building a positive

relationship and hopefully deescalating emotions that

lead to more aggressive behaviors. I think there methods

and do keep things from getting worse. If I got mad that

she bites me and pushed her away in anger she would

retaliate and hit me. So it has to be firm but not angry on my

part.

For the last two years I worked with a psychologist that

is a professor and runs an anxiety clinic at the local

university. He sees all the stuff she does. The great thing

about this wonderful Phd is that he has not gotten mad

at her. He does what he can. He talks to her and tells her to

go to school, to not bite Mom. And he keeps warm feelings

toward us.

My daughter is a little peanut, short in statue and petite

and the psychiatrists have all been very conservative

with medication. They take it very slow. Very methodical.

We started at a very low dose of medication 3 weeks ago. The

increases are very slow. There has been no change. But also

no side effects. She has other health issues with growth and

endocrine systems so this all makes sense to be careful. I want

it this way too. Even though I wish the new school year started

out without the anxiety. It looks like we will have to

keep coping for awhile longer.

All the advice you and others have given me is very helpful.

Helping me cope helps her too.

thanks so much,

Pam

>

> > >

>

> > > It happened again today at the grocery store. I was carrying

>

> > > the groceries and she thougt it looked weird and dug her

>

> > > fingers in my hand. I told her to stop and this makes her mad

>

> > > she sys what did I do wrong? When I told her she hit me

>

> > > so this makes no sense. I didn't talk again except to say

>

> > > no computer time today.

>

> >

>

> > Pam, I wouldn't punish her if she doesn't understand what she did wrong. If

she is like my son, she thinks you understand it all without being told. He's

never really been able to articulate this odd behavior stuff either.

>

> >

>

> > She probably thinks you know it looks weird just like she does. Hitting you

probably has something to do with that. Since she thinks you know it just like

her, she thinks you're messing with her head when you try to say something

different. What does she say when you tell her it is wrong to bite other

people? Can you discuss the idea of her telling you to move your hand instead

of biting you?

>

> >

>

> > I like Jeff's idea of just trying to get her to express herself and bounce

it back at her. Then discuss why it is a problem without suggesting any

solutions or consequences. If she is like my son, she won't be able to see your

point. If I were to tell my son I don't like being bitten, that people think it

is odd, etc. (if this were one of his behaviors), he would say something to

indicate that this isn't so, that I'm nuts or a liar, and there would be no

convincing him. But maybe it would be different if we could somehow come to

some understanding of their behavior, how they feel, etc. Maybe like Jeff says,

they would be able to move on then. Maybe she just wants to be understood?

>

> >

>

> > I wonder if your hand position is something out of place, like the garbage

on the playground or bubbles lingering in the sink? It is like somehow these

things have an exaggerated, nightmarish effect on her emotions, kind of like the

imagined monster under the bed with little kids. Do you think it could be

something like that?

>

> >

>

> > I'm totally just throwing ideas out here...

>

> >

>

> > One thing that has started happening in the last year or so is that my son

has started saying that he thought weird thoughts when he was little but now he

doesn't. He speaks of himself as being a new person. He says he has embraced

his " inner OCD " and he is thinking about embracing other inner things that he

can't so far. Maybe you will find it encouraging that your daughter will get to

this point too. They do grow up!

>

> >

>

[Guest guest]

Dear Jeff thank you for this response and the others too.

I will certainly try to talk to her with more words. I told her

that I can't use my hands like a mitten. And she did say

she could see that would be hard.

I tried what you said about just talking calmly about the

biting. And now she is saying she is bird and bumps her nose into my arm. But

last night she reverted to biting. I will

just have to remind her and try to keep her stress down.

I can see that your ideas can be very helpful.

Transitions have always set her into

a tantrum so a tug of my hair or a soft bite is a big

improvement.

I would say life has improved for us, she is much more

engaging with me these last few years. But not being

withdrawn means that she has more anxiety. Severe.

As I mentioned often in my mail she has not been in school

since March so we really need the medication solution to

help reduce anxiety. She is so gifted verbally and so

gifted in reasoning skills that each new therapist thinks

they can reason with her, it gives me hope too. But we end

up in the same place, so I am convinced medication

needs to keep moving forward, slowly carefully but forward.

thank you for helping me understand her better. It is better

she pretends to be a bird sometimes than we just keep

getting mad at each other over the biting.

Definately being kind and warm toward her and trying to see

it from her view will help her accept that

I am trying to help her and not hurt her. And keep

our relationship loving. And keep her on track with taking

medication.

thanks again,

Pam

> >

>

> Yes, notice that immediate reaction can save a lot of long-term struggle. Just

remember that while the " NO " or yelling " STOP " and even " that hurts me " is a

normal way to raise children, sometimes it simply does not work. For me it was

because I guessed the wrong reason someone said that. I needed an exact

explanation before I understood, with sentences that do not only make simple

statements but explain why you said them. I did not get the body language like

leaving me or making me leave). That is called 'non-verbal' and it left me

bewildered as to why someone hates me so much. Even saying " that hurts " was not

enough if the child does not happen to connecwith t that with " so if you will

say 'excuse me' or tap me on the arm then I will be happy to listen to you " .

Yeah I know that is hard to comprehend if you do not have Asperger's syndrome

but I understand that limitation completely. And it is more difficult for some

children than others.

>

> Having said that, I agree with Roxanna. The 'shock' needs to happen right then

if they don't take you seriously. The habit grows deeper and is harder to

correct the longer it is let go. And most importantly a punishment (whether it

is yelling or withholding privileges) will either harm or do nothing if the

child does not understand why. If NT they will show it in many ways. If Aspie,

listen closely to their words and believe they are serious when they say, " what

did I do wrong? "

>

> I have no formal education in psychology--just high IQ, tons of observation

with tons of families both successful and dysfunctional, and my own Aspie

experience. Oh, most importantly I don't stop learning. Pride is what kept me

from learning in the past. " I already know, so why listen to this fool? " sort of

thoughts. Now I just listen and consider what everyone says.

>

> Thank you for sharing, I apologize for sounding like there was no seriousness

in talking with my ds. The term " chit chat " is not in my vocabulary. I have

Asperger's syndrome. NOTHING I say is " chit chat " ! Thanks!

>

[Guest guest]

Jeff, I am LOVING that you’re going to start posting I hope

you post A LOT. Honestly… we’re still waiting on a diagnosis for my eldest, and

I’m COMPLETELY lost as to what’s going on with my youngest… I honestly suspect

Asperger’s too, but he’s *so different*, and doesn’t struggle with a lot

of the same stuff my eldest does, but I see him “silently” struggling with a

lot of the things I have my whole life. Yes, I suspect that I, too, have

Aspergers – and the more I’ve researched to help my sons, the more I’m learning

about myself. I completely got 100% of what you said, and love that there’s

someone else around who’s straight to the point, whether people want to hear it

or not. Haha

I know a problem I’ve always struggled with, and it’s causing

issues with my husband and I right now – and I believe causing some issues for

my boys, too… is that if I DON’T say what’s on my mind, it sits in my head,

festers, and I build up 1000 reasons to be upset and anxious about it, and then

I’m essentially paralyzed from being able to… well.. FUNCTION! Lots of times,

talking helps me sort something out in my own head, and unless I talk about it,

I can’t find another way to get around it. That whole “black or white, there is

no grey”… yes – that’s me. I want to go down THIS path, there IS no other way

to get around it… lol. I see that in my sons a lot… esp. my eldest. And I

believe this is a “root cause” behind a lot of his fears, etc.

Ok… I lost my train of thought and clearly need more coffee

Thanks for posting, Jeff… I look forward to hearing more from you

=)

From:

[mailto: ] On

Behalf Of Jeff

Sent: Wednesday, July 29, 2009 9:24 PM

Subject: Re: ( ) Fearful of things new, changed or out of

the ordinary

First my introduction...

Hello, I am new here but hopefully I have some good insights because my son is

recently diagnosed with Asperger's syndrome (age 12). Actually I have almost

ALL of the symptoms myself but nobody will diagnose me because I'm an adult...

Now to the subject, which is about learning to cope with the extreme

fear/discomfort...

Although cases are often different (i.e. my son and I don't have much fear of

garbage or soap bubbles), I do have fear of every little routine changing. I

broke down emotionally yesterday because my PDA and watch are both lost so I

have no way to be reminded when time to go somewhere or what I have planned. I

completely missed a mandatory therapy session without a clue until my wife

asked me how " it " went. (Wow I hate that confused feeling when this

question pops up because " it " must be important but I don't know what

" it " is!)

I have some good and some tough experiences helping my son learn to cope with

the fear whether it was getting his hands sticky, changing routine, or because

someone moved his object that he hid. For myself, I have always hated when

people tried to help me learn to cope. Yes I really needed to learn, but I sure

resisted and argued. I felt misunderstood. I felt unimportant. I perceived

their efforts to show that the way I felt did not matter to them, or that they

did not believe that I really was suffering. Have you ever felt that your

daughter kept trying to convince you of something that you thought you already

understood? That's a sign that it might be happening. Much of what the experts

are hopefully teaching you is how to communicate. We (any ASD) don't

communicate the same way as others, even if we are smart as Einstein (my hero).

That means that if you have not worked out enough of those FTCs (Failure-Ta-Communicate

issues), you would be unsuccessful at reasoning with her. The solution is

age-old. Start with validating her statements (assuming she wants to talk about

it). For example if my son doesn't want to go to school that day, mom might

jump right to the " why you should want to go to school " . That would

skip the first step [validate the intention and possibly feelings driving it].

I find that the right questions give him a chance to tell me why, and how he

feels. 'Feeling' statements don't come naturally, esp. for me and my son, so

these take a lot of discussion and practice. It helped me to start looking up

words because I didn't remember enough words that tell how I feel. I think

restating will take a lot of practice, too. I felt sooo frustrated because my mother

or my wife would try to guess what was wrong (and were not even close). I

thought it should be obvious by how I was acting and what I had said already

but that doesn't work. In light of having Asperger's all that time, it makes

sense now that the body language or all non-verbal language just did not work.

I needed to say a complete sentence, and she needed to learn the way I used

words in order to restate with other words what she understood. When the

restating becomes fluent (getting affirmative response from her), and the habit

becomes normal, then you find a new trust opens up. She will feel more

comfortable telling you things you had not thought of, concerning the fears. At

this point I should note that many parents have already worked out communication

this far. I don't mean to judge that anybody has not because you can have this

but still see difficulties in helping your child learn to cope. The biggest

point here, though, is that exact words are ultimately important to me as the

aspie (I think 'aspie' is a peculiar word but I like having shortcut terms

Thousands of arguments since my youth have been only about what exact words

were said and what op (other person) really meant. That is why communication is

such a roadblock in learning to cope. Once you are good at restating and

understanding each other, talk about why. Not " should " nor

" shouldn't " nor " what would be better " , just why something

is troublesome. That also validates and helps you show you accept her. The more

I talked and believed op was listening, the more I focused on listening to

myself and saw what I could do differently that would be easier. Basically she

will solve her own problems, but perhaps not without feeling your support and

understanding. It would be HUGE if I could just not feel the anxiety anymore,

but I really don't need to get rid of that. I feel the need for my wife to

understand that. When I feel that she accepts my strong feeling then I move on

and realize that whatever happened is not the end of the world. At that point

the anxiety will be released easier. It will come back again, but now I know

that I can cope with it.

Keep in mind that sometimes diagnoses (or ppl referring to them) rely too much

on a patient's actions and not enough on the reason for the actions. In

'coping' we learn not to eliminate the reason, but only the action or response

(which was getting in the way of lifestyle). If that seems cryptic then I just

mean that it is OK to have emotions and tendencies and fears. In fact, having

Asperger's myself, I am learning the hard way that I have no way to eliminate

anxiety and fear of myself. I can accept that first, then get on with learning

to cope with it.

I hope I don't offend anyone. I realize because of the different way I

communicate (for example being straight to the point) I have often done so. I

just want to offer help even if ppl might not want to hear it. In this group I

see just the kind of discussions that I have always wanted to be involved in

but seemed nobody around me wanted to talk about it.

Thank You and I wish you happy experiences! (more below about the comment)

[...]

> The Asperger expert I talked to recently is a very hard edge guy that

> has a basic philosophy that if the Asperger kid can't be reasoned with the

parent has to be strict and have the child obey them

> (this PHd doctor has an Asperger son hmmmmm). I went to the Yale

> Behaviorists in CT and they have been helping me with behavior but they

don't care about the bubbles and the soft touch stuff ...I guess they hope

medication will lessen these issues.

May I say that I love your comment about the " PHd doctor " :-)) I had

many issues with those type of doctors. Perhaps they have Asperger's. I think

some " experts " tend to let their own bias get in the way and

specifically because their own child has been diagnosed. In any case, I gave my

2 cents or $2 (or hopefully $200 at least) on the subject of how to reason with

the Asperger's child. In my case in fact I struggle with it a great deal now,

mostly because I never heard of the syndrome until recently and thought I had

to prove to the world that there was such a disorder. I pushed the notion that

I really was different. Most people seemed to contradict themselves by telling

me I'm not different but proceeding the rest of the time to pick out everything

I do different and try convincing me to change it. I guess one good point is

that the bubbles and touch sensitivity are not " wrong " . They have

more to do with preference so go ahead and validate her concerns. It sounds

good the way she talks about it. If you keep discussing her concerns, in time

she can learn to cope better with the problem that arises when issues fall

beyond her control. I struggle with the difference between what is my

responsibility (i.e. rinsing my own sink) and what is not (i.e. rinsing your

sink). That is not to say that she doesn't have a good reason to rinse the sink

after you when she uses it also, but talking about that can help. As I talk

about my frustration with a therapist and I realize she does accept my sense of

importance, then there's nothing left for me to do but think about whether a

" problem " is my responsibility or not then decide how to react. I

practice things like removing myself from the situation (mentally and/or

physically) so that I can let go of my urge to fix the problem (i.e. rinse the

sink for you).

Remember though, children are young and so it takes time [with or without

disorders] to understand social issues like responsibility. The best thing is

to be patient and try to keep communication open while they try to work out

their issues and decide new things important to them and what was not so important.

[Guest guest]

HA! Love your PS. I think I’m the same way I love your

ramblings!! Keep it up !!

=)

From:

[mailto: ] On

Behalf Of Jeff

Sent: Friday, July 31, 2009 2:50 AM

Subject: ( ) Re: Fearful of things new, changed or out of

the ordinary

>

> Jeff, thanks for sharing this. This was very helpful to me, and it was

thought provoking. I can tell my son feels misunderstood and is offended by

things I say, but I can't figure out why or how to say things differently. I

will try to follow your advice.

>

Good, that's optimistic

I realize it will still be difficult, if for no other reason than he will never

actually 'think' the same way you do (barring being cured, of course). So the

thing to remember is that it's a matter of improving communication skills--by

both of you. As the Aspie I practice toning down my obsessive nature by

choosing a different goal that might be more reachable. For example I struggle

because my goal was to convince op to agree with me (not simply saying " I

see " because I don't believe it unless proven by a convincing example). If

I realize it I can make a new conscious goal to try to understand their point

of view instead. It distracts me from the unrealistic goal.

You will notice that this is something he can do rather than you, so your job

as parent can be to help him become aware of this possibility. That is where

communications skills come in. When I was frustrated that my mom or teacher did

not understand me, I simply did not realize that they could not know what I

knew because they were not here with me (experiencing the same thing I was, or

being conscious inside my head). I like that " breakthrough " article

discussed earlier because it helped me understand that more even if only

analytically. Now I don't remember what it was but when I was younger my doctor

said something that made me stop and think. You would want to say something

that might provoke him to stop trying to convince you for a moment, and think

about whether he could ask you something to understand your point of view

better. Of course you could not say that directly or he may be defensive

because it would imply he was missing something. Psychologically, it needs to

be a statement revealing yourself so that it is not offensive toward him.

Perhaps the thing that helps me as Aspie is when someone admits that they are

trying to understand me, but they do not have my experience. Then a pause is

helpful. If he has trouble pausing to think, perhaps it would help if you had

something to do for a moment and want to continue the conversation in a few

minutes. I wonder, at the point where he seems frustrated, how would he respond

if you try that? Of course I'm not a trained counselor so my apologies if you

try something I suggest and it turns into chaos ;-) Remember if something

starts to generate too much steam, a quick apology helps bring you out of

trouble. Not necessarily even knowing what was going wrong, just saying,

" I'm sorry if I said something wrong, I don't mean to offend anyone " .

> > Start with validating her statements ... I find that the right

questions give him a chance to tell me why, and how he feels. 'Feeling'

statements don't come naturally, esp. for me and my son, so these take a lot of

discussion and practice. It helped me to start looking up words because I

didn't remember enough words that tell how I feel. I think restating will take

a lot of practice, too.

>

> This is where I mess up. I can't figure out how to ask questions in a way

that won't offend my son. Do you have some specific examples of situations with

your son and questions you asked that enabled him to talk about his feelings?

>

I prefer phrases like 'feel lost' rather than 'mess up' because I don't think

it really is messing up if you have good intentions as the parent. In parenting

it is not so much what you do, as why you do it. [i feel that a safe rule

because although there are some actions that will always be " the wrong

thing to do for your child " , that actually means there was no good reason

to do it so you will never do it if you have good intentions. Therefore focus

on being more aware of your intentions and you gain power to free yourself of

feeling guilty or thinking you're a failure.

Think of it as a two-way understanding, not only you understanding him. Most of

it I explain earlier. Remember also that a young child would not understand you

as easily in any case (because they haven't the experience yet), and it gets a

little harder with Asperger's syndrome in the works. Perhaps the simplest

effective retry starts with, " I want to understand " . He still might

have trouble realizing your meaning that you lack understanding because your

point of view is different. Sometimes you might be struggling with your own pride/ego.

It might be difficult to admit to him that you simply cannot see what he means.

Just being able to say that out loud more often might help him relax and give

you a little more room. After all, we Aspies are sensetive to op feelings :-)

Just sometimes logically we missed or ignored the thought that the person I'm

arguing with might feel vulnerable. Once your son focuses on understanding you,

he might feel that you are beginning to understand more. Also, your example of

good communication will eventually rub off on him. It may take a while but he

will learn to express himself better using words. Then you will find it

'magically' easier to restate what he means.

> > I needed to say a complete sentence, and [my wife] needed to learn

the way I used words in order to restate with other words what she understood.

When the restating becomes fluent (getting affirmative response from her), and

the habit becomes normal, then you find a new trust opens up.

>

> How are you trying to get this to happen with your son?

>

I have to admit that being over 30 helps me a lot to use more effective

sentences, but I still have trouble getting my ds to speak clearly at all let

alone improve sentences to get his point across. He's 12 and I think that's the

magic age where he's taking off with communication. Of course his therapy might

be helping too Recently he entered the room and when he saw me, he gave a

big smile that looked real. It surprised me because I didn't remember seeing

that before! So he is improving.

One thing that might differ with my parenting situation is that some parents

are NT and cannot therefore have the intuitive relationship I developed with my

ds. Still, I think I learned a lot watching how he interacted with his mom up

to 3 (when she gave up and left), and his step mother the rest of the time

(he's 12).

To work with his verbal skills I started by talking to him about relationships

(i.e. understanding each other, being understood, telling people how we feel)

in a vague approach. That is I didn't talk about our situation directly.

Sometimes I thought of examples to share. I really wondered if he was listening

because I had several sessions of talking and he never responded verbally to

any of them. We just walked around outside while I talked. I remembered that I

always had learned from other people's discussions by listening in when I was

not even part of the conversation, so I suspected he was processing everything

I said. Later I started to ask him short simple questions. They were things

like how he felt about one of those issues or whether he felt frustrated from

one of his specific experiences. His answers for a while were real short. First

the only answer was either " I don't know " or " I guess " .

Sometimes just a sound (almost growl). I didn't push him, but often I asked a

different question designed to provoke more than " I guess " , and

having no " wrong " answer. I talked about that sometimes--telling him

that lots of questions don't have a wrong answer, but just give me a chance to

say what I think. In weeks he started to talk to me more without being provoked

on a subject. I learned that he had been listening and was interested all

along. Once he surprised me when he brought up something I said long ago about

having our own little world. I had told him that it helped me relax sometimes

when I went into my own world in my head. That was a place where I could

control things around me, and it was a nice quiet place. When he brought it up,

I perceived that he was using his 'own little world' to avoid an experience

that he could learn from. Since he brought it up, I found it a perfect

opportunity for me to reply, " Yes--and sometimes I find it very helpful to

go into another person's world or back to this world where mom is. I need to go

into their world so I can get something I need, or so they can understand

me. " I don't remember my exact words. He stopped and looked like he was

thinking hard about it. Here I was, somebody whom he trusted to understand his

need to withdraw to a safe place in his mind, but out of the blue I said I

would not want to stay there. In fact I said I can get something I need by

leaving that safety zone. It sort of shocked him into a new realization. Even

though we don't talk much about it, I have seen him try a little harder to

relate with other people.

He is much quieter than I think I was at that age with my own family. I think

he was a little more careful because his new step mom has a rather 'loud'

personality. When I got to know her I was not in the family loop yet and she

acted very shy. When I got in, I found that she is perhaps like the

sister-in-law in the discussion about insensitive family members. I felt like

she was overwhelming my children with all the loud scolding (which she said is

not yelling), accusing, loud play (crazy stuff--things broken and loud

screams), teasing (like telling the 2-yr-old an onion is an apple and letting

him bite it to see his face). I have seen things improve a great deal in both

directions. Mom was frustrated trying to get them to behave. I had thought all

along that they were trying to please her more than any child I had ever seen,

but finally she was wearing down and listened to my suggestion. When some big

dramatic thing happens, like parents to the point of separating, that is the

time for us parents to break down and listen to advice. I got both mom to go to

therapy and try to explain how her children are disobedient. As the counselor

began to see mom's point of view, she was able to begin helping mom see a new

point of view on things.

Well I said a lot of different things and sometimes ppl think I'm just

rambling, but I hope those things are helpful. Communication certainly is a big

thing for everyone to learn and doesn't happen easily because of our different

experience or focus. Working on it helps uncover all the other secrets of

relationships.

Have fun! --jeffs

P.S. Did anyone figure out that the subject that I obsess about (intensified by

Asperger's) is psychology? When I learned that an Asperger's child will obsess

about a certain subject, I thought mine was obviously computers. I always

rambled about how a computer works inside and how it doesn't really think but

it copies the thinking pattern of it's programmer. Now I realize that it was

the person's way of thinking that I was comparing to a computer. I was

intrigued by the idea of programming " artificial intelligence " but I

focused on describing every aspect of human cognition and behavior, and the

funny way that they thought their computer was smart when it really cannot be.

Just another tidbit that I almost couldn't stop rambling about. I like typing

too much

[Guest guest]

>

> Yes, notice that immediate reaction can save a lot of long-term struggle. Just

remember that while the " NO " or yelling " STOP " and even " that hurts me " is a

normal way to raise children, sometimes it simply does not work. For me it was

because I guessed the wrong reason someone said that. I needed an exact

explanation before I understood, with sentences that do not only make simple

statements but explain why you said them. I did not get the body language like

leaving me or making me leave). That is called 'non-verbal' and it left me

bewildered as to why someone hates me so much. Even saying " that hurts " was not

enough if the child does not happen to connect that with " so if you will say

'excuse me' or tap me on the arm then I will be happy to listen to you " . Yeah I

know that is hard to comprehend if you do not have Asperger's syndrome but I

understand that limitation completely. And it is more difficult for some

children than others.

Jeff, your range of symptoms must be very similar to my son's, at least in this

regard, because this is sounding like my son. One of the things our neuropsych

told us was that it is important to simply stop the bad behavior, try not to let

it happen in the first place, for lots of reasons. Use avoidance, turning away,

don't engage back, stop talking, redirect when you see it coming, etc. It

sounds like this is what you are saying. The " shock " can be simply not letting

the intended action happen?

One of my son's bad behaviors is blurting out " you're stupid " in a very forceful

and mean way when he has one of these moments of communication disconnects and

he is offended or whatever. If he is very angry or the other person doesn't

back down, he will go on and on about how stupid they are. He's 14 and doesn't

do it at school anymore; he just clams up and tunes out there. Although I

imagine he would if they pushed him. He went to a very laid back jr high where

he was never pushed (or never directly helped).

Anyway, so I have to figure out what " shock " can stop these verbal outbursts, I

guess? Maybe " stop " is not right--I want him to realize I am serious when I

protest it? That I have a " real " reason? We have progressed to where he can

self-calm within a few minutes if left alone (not necessarily physically alone

anymore, just nobody talking to him). Sometimes he can control himself enough

that he will say something like " please stop talking " instead of " you're

stupid " . But he is still very agitated, says it in a rude tone, and is keeping

control with effort. And he isn't expressing himself at all in places like

school--like I said, he doesn't want to get in trouble, so he just shuts down.

He sits in class and doesn't talk to anybody except a handful of select people,

if they happen to be near him. He does this even if he really likes the people

and is really enjoying their company. They don't ever find out how much he is

enjoying their company. So, he still has to learn to manage this somehow if he

is going to function at work and at home with a family and with friends. I

think what you are saying is that a lot of it may be simply learning to

communicate with NT people so they are actually understanding what he wants (and

us with him). And, in turn, this will only happen if he can trust the people

trying to teach these things to him. And the trust will probably never happen

unless said people respect the different way he thinks and genuinely try to

understand.

So, Pam, I guess it is the same with you? Somehow you need to " shock " her into

stopping the biting or whatever? Personally, I am going to have to think about

this!

Pam, in your case, I think part of it is just patience. In a month or so, you

will have specialized school staff to start helping you shoulder the burden and

brainstorm with, along with the Yale people, and her medication should help

things ease up little by little in the months ahead. Personally, I think this

specialized school may have some tricks up their sleeve to help your daughter be

more comfortable at school and your daughter may be pleasantly surprised.

And I'm trying to think how they are going to tackle these problems in social

skills training at school...

And I'm spazing out because it is only 3 weeks until school, and I know I have

to come up with a way to explain all this in an introductory letter, at least

somewhat, because the autism team definitely didn't get a lot of this. So, once

again, it is up to me if I want school staff to have good input.

[Guest guest]

>

> Jeff, I am LOVING that you're going to start posting I hope you post A

> LOT. Honestly. we're still waiting on a diagnosis for my eldest,

Wonderful, that helps me too, seeing how others are interested in my posts, and

about the suspense of wondering what's going on...

> I know a problem I've always struggled with, and it's causing issues with my

> husband and I right now - and I believe causing some issues for my boys,

> too. is that if I DON'T say what's on my mind, it sits in my head, festers,

> and I build up 1000 reasons to be upset and anxious about it, and then I'm

> essentially paralyzed from being able to. well.. FUNCTION! Lots of times,

> talking helps me sort something out in my own head, and unless I talk about

> it, I can't find another way to get around it. That whole " black or white,

> there is no grey " . yes - that's me. I want to go down THIS path, there IS no

> other way to get around it. lol. I see that in my sons a lot. esp. my

> eldest. And I believe this is a " root cause " behind a lot of his fears, etc.

>

> Ok. I lost my train of thought and clearly need more coffee Thanks for

> posting, Jeff. I look forward to hearing more from you

>

> =)

He he, I appreciate you talking about that too (Don't worry, you didn't look

like you lost any train of thought). I notice that things like holding back a

negative thought or sticking with " black & white " are a very common problem for

people whether NT or not. Much of it comes from the ways we are raised, I think.

I try to remember that the " label " doesn't really matter. Whether it is

" Asperger's talking " matters not as much as just being aware of the cognitive

error and making a correction. Often when I hold something inside I am certain

that if I mention it to DW she would explode, and things would be terrible. She

would blame me for everything again (that whole blaming issue is a big subject I

hope to discuss more later). I would defend my ego by blaming her back or making

excuses or justifying. All sorts of " thinking error " . I needed to stop jumping

to conclusions, mind reading, or grandifying (whatever the word is for making

things seem huge), and just accept what is. After talking about it and accepting

her response as her own, I did feel the pressure released.

Thanks again!