Re: Making excuses

[Guest guest]

Amber, I love your thinking! The little ones do love my guy as well, maybe

partly because his most overwhelming self-stim/ obsession at the age of ten is

TELETUBBIES for goodness sake. He runs around dancing like they do, saying

eh-oh and La-la ball! And telling those silly stories in teletubby voices. Asks

strangers, " Who spilled the tubbie custard! " It is awful for me, but often

other children do just laugh it off.

I applaud your strength at least today!

( ) Making excuses

I took Seth down to get his teeth cleaned the other day and while I

was there another little girl came in adn Seth was interested in her

and started to talk to her. At first fairly normally. Then he

started shouting things like, " Show me your scary teeth! " at her and

she thpought it was hilarious because she's like six but the girl's

mother was clearly alarmed by his behaviour and was staring at me

wating for me to do somethign besides ask him to lower his voice.

I don't even know what it was she wanted me to do but I thought to

myself, for the first time, " You know what lady, I don't know you, at

this point I can't say I even particularly like you for the look

you're giving my son and frankly I'm tired of making excuses for his

behavior. I don't have to apologize to you for the way he is. I

don't have to go into a litany of his problems to make you happier

about his behavor. I don't owe you anyhting and neither does Seth. "

It was kind of a werid feeling. I probably can't go through life

always thinking that but at the moment it was very liberating. My

husband was like, " Why do other little kids love Seth but their

parents are always so freaked out by him? " And I said, " Isn't it

obvious the children don't know how people are " supposed " to act they

are four and five years old but the parents have expectations so they

can't get past those to enjoy him for what he is. "

Sorry, headachey day about the world at large and AS today. I love

him anyway. :-)

Amber

[Guest guest]

Oh wow, how can I get like that?

I agree, so often kids are fine with ds's behavior (though at times

he'll run into a whiny one that will come and tattle to us...usually

after he's responded to their taunting and they realize they can't

manipulate him even though he's smaller) but the parents look at me like

he's got a third eye. Dh is always telling me to ignore people, but he's

not out and about with ds as much as I am..and when he is, it's

typically in a busier place (Disneyland, the movies, example) where he's

so focused on ds that he doesn't get a chance to see the looks.

Yesterday, ds threw a monster fit in the driveway, because he couldn't

park his bicycle in the street like a bigger neighbor kid was doing.

(Lots of reasons why he couldn't park his bike there, but he'd listen to

none.) He threw his bicycle helmet at me, bit me, kicked, you name it.

Thank God the one neighbor who was outside is a good friend of ours and

he pretended he didn't see. (Talking to him later, he saw the whole

thing but knew he couldn't help and staring wouldn't help either.) Who

knows what people staring out their windows after hearing the yelling

thought -- we have one neighbor family who is nice but I don't think

they have a clue about autism and a while back were upset with me

because I didn't have time to keep fixing a computer problem they have.

(I work on computers and help when I can, but when my dd started having

seizures, my time out of the house became even less than it was.) So

many people don't seem to think outside of their world, if that makes

sense?

I want to get to the point where I consistently remember that no one

else needs to know what is up with ds -- I won't see them again and

their nasty talk won't hurt us -- but I have to get beyond the whole

'can't you understand that there might be something WRONG instead of

just a bratty kid?' theory where I get frustrated that people don't mind

their own business. Unfortunately, I think it goes hand-in-hand with

society's feelings anymore that anything they see is their business and

being 'offended' by everything different is the norm. Everyone thinks

it's their 'right' to step in -- and oftentimes the worst people are

those with young children or none at all, or those whose child is

'perfect.'

Blech, I'm in a Monday-itis mood and tired, sorry for the rant

Donna

---- Original Message -----

>

> From: Amber

>

> <mailto: %40>

> Sent: Sunday, July 16, 2006 11:43 AM

> Subject: ( ) Making excuses

>

> I took Seth down to get his teeth cleaned the other day and while I

> was there another little girl came in adn Seth was interested in her

> and started to talk to her. At first fairly normally. Then he

> started shouting things like, " Show me your scary teeth! " at her and

> she thpought it was hilarious because she's like six but the girl's

> mother was clearly alarmed by his behaviour and was staring at me

> wating for me to do somethign besides ask him to lower his voice.

>

> I don't even know what it was she wanted me to do but I thought to

> myself, for the first time, " You know what lady, I don't know you, at

> this point I can't say I even particularly like you for the look

> you're giving my son and frankly I'm tired of making excuses for his

> behavior. I don't have to apologize to you for the way he is. I

> don't have to go into a litany of his problems to make you happier

> about his behavor. I don't owe you anyhting and neither does Seth. "

> It was kind of a werid feeling. I probably can't go through life

> always thinking that but at the moment it was very liberating. My

> husband was like, " Why do other little kids love Seth but their

> parents are always so freaked out by him? " And I said, " Isn't it

> obvious the children don't know how people are " supposed " to act they

> are four and five years old but the parents have expectations so they

> can't get past those to enjoy him for what he is. "

>

> Sorry, headachey day about the world at large and AS today. I love

> him anyway. :-)

>

> Amber

>

[Guest guest]

>

> Oh wow, how can I get like that?

>

> I agree, so often kids are fine with ds's behavior (though at

times

> he'll run into a whiny one that will come and tattle to

us...usually

> after he's responded to their taunting and they realize they can't

> manipulate him even though he's smaller) but the parents look at

me like

> he's got a third eye. Dh is always telling me to ignore people,

but he's

> not out and about with ds as much as I am..and when he is, it's

> typically in a busier place (Disneyland, the movies, example)

where he's

> so focused on ds that he doesn't get a chance to see the looks.

>

> Yesterday, ds threw a monster fit in the driveway, because he

couldn't

> park his bicycle in the street like a bigger neighbor kid was

doing.

> (Lots of reasons why he couldn't park his bike there, but he'd

listen to

> none.) He threw his bicycle helmet at me, bit me, kicked, you name

it.

> Thank God the one neighbor who was outside is a good friend of

ours and

> he pretended he didn't see. (Talking to him later, he saw the

whole

> thing but knew he couldn't help and staring wouldn't help either.)

Who

> knows what people staring out their windows after hearing the

yelling

> thought -- we have one neighbor family who is nice but I don't

think

> they have a clue about autism and a while back were upset with me

> because I didn't have time to keep fixing a computer problem they

have.

> (I work on computers and help when I can, but when my dd started

having

> seizures, my time out of the house became even less than it was.)

So

> many people don't seem to think outside of their world, if that

makes

> sense?

>

> I want to get to the point where I consistently remember that no

one

> else needs to know what is up with ds -- I won't see them again

and

> their nasty talk won't hurt us -- but I have to get beyond the

whole

> 'can't you understand that there might be something WRONG instead

of

> just a bratty kid?' theory where I get frustrated that people

don't mind

> their own business. Unfortunately, I think it goes hand-in-hand

with

> society's feelings anymore that anything they see is their

business and

> being 'offended' by everything different is the norm. Everyone

thinks

> it's their 'right' to step in -- and oftentimes the worst people

are

> those with young children or none at all, or those whose child is

> 'perfect.'

>

> Blech, I'm in a Monday-itis mood and tired, sorry for the rant

> Donna

>

> ---- Original Message -----

> >

> > From: Amber

> >

> > <mailto: %40>

> > Sent: Sunday, July 16, 2006 11:43 AM

> > Subject: ( ) Making excuses

> >

> > I took Seth down to get his teeth cleaned the other day and

while I

> > was there another little girl came in adn Seth was interested in

her

> > and started to talk to her. At first fairly normally. Then he

> > started shouting things like, " Show me your scary teeth! " at her

and

> > she thpought it was hilarious because she's like six but the

girl's

> > mother was clearly alarmed by his behaviour and was staring at me

> > wating for me to do somethign besides ask him to lower his voice.

> >

> > I don't even know what it was she wanted me to do but I thought

to

> > myself, for the first time, " You know what lady, I don't know

you, at

> > this point I can't say I even particularly like you for the look

> > you're giving my son and frankly I'm tired of making excuses for

his

> > behavior. I don't have to apologize to you for the way he is. I

> > don't have to go into a litany of his problems to make you

happier

> > about his behavor. I don't owe you anyhting and neither does

Seth. "

> > It was kind of a werid feeling. I probably can't go through life

> > always thinking that but at the moment it was very liberating. My

> > husband was like, " Why do other little kids love Seth but their

> > parents are always so freaked out by him? " And I said, " Isn't it

> > obvious the children don't know how people are " supposed " to act

they

> > are four and five years old but the parents have expectations so

they

> > can't get past those to enjoy him for what he is. "

> >

> > Sorry, headachey day about the world at large and AS today. I

love

> > him anyway. :-)

> >

> > Amber

> >

>

>

>

>

[Guest guest]

You are not allowed to apologize here!

I understand what you mean exactly and it is hard to get to the point where you

don't really care what other people think. Sometimes I still do care in some

ways. But mostly, I don't. It took a long time to get to here. But basically,

I can't fix the problem - with my kid or with the person staring. So why get

all upset about it? That is how I usually look at things.

The bike mess sounds awful. You might try (if you haven't already) to give him

a choice when he demands doing something he can't. Something like, " You can

park your bike here, or park it over there - which choice do you want? " And

just keep repeating that. If that fails to work and he throws things and hits,

I would take the bike away for the rest of the day or whatever length of time

you feel appropriate. You shouldn't be the punching bag!

Roxanna

( ) Making excuses

>

> I took Seth down to get his teeth cleaned the other day and while I

> was there another little girl came in adn Seth was interested in her

> and started to talk to her. At first fairly normally. Then he

> started shouting things like, " Show me your scary teeth! " at her and

> she thpought it was hilarious because she's like six but the girl's

> mother was clearly alarmed by his behaviour and was staring at me

> wating for me to do somethign besides ask him to lower his voice.

>

> I don't even know what it was she wanted me to do but I thought to

> myself, for the first time, " You know what lady, I don't know you, at

> this point I can't say I even particularly like you for the look

> you're giving my son and frankly I'm tired of making excuses for his

> behavior. I don't have to apologize to you for the way he is. I

> don't have to go into a litany of his problems to make you happier

> about his behavor. I don't owe you anyhting and neither does Seth. "

> It was kind of a werid feeling. I probably can't go through life

> always thinking that but at the moment it was very liberating. My

> husband was like, " Why do other little kids love Seth but their

> parents are always so freaked out by him? " And I said, " Isn't it

> obvious the children don't know how people are " supposed " to act they

> are four and five years old but the parents have expectations so they

> can't get past those to enjoy him for what he is. "

>

> Sorry, headachey day about the world at large and AS today. I love

> him anyway. :-)

>

> Amber

>

[Guest guest]

Hi Kim,

I know how you feel exactly! When my oldest was first dx'd with autism, my mil

sent me an article to read on brain tumors. Seems there was a kid who was dx'd

with autism but he didn't really have autism, he had a brain tumor. And she

wrote on the top of the article, " Maybe he has this? " And all I could think

was, " A brain tumor? A brain tumor would be better????? " Augh!

Well, your friends were not the nicest to tell you that. But just tell them,

" hey you were wrong. He isn't slow. He's got autism. "

Roxanna

Re: ( ) Making excuses

> I gotta tell you, those last comments make me feel sooo much

better today....we just found out about my ds (he is 5) he has AS

and a very very good friend of mine, just said " well you know we (as

in all my friends) were discussing < (without me) and we all

just thought he was kinda slow. " She didn't understand why that

upset me. Also, why is it everyone says they are relieved, what

does that mean????? I am not relieved I am upset, confused and

overwhemed.

thanks for reading,

kim

.

[Guest guest]

Kim, I've been getting similar responses from our friends &

acquaintances. Turns out ppl have long thought somehting was different

about Max but nobody ever said anything to us. Now we're pursuing the

diagnosis and ppl are starting to say, " Oh yeah! He seemed.... " fill

in the blank w/ phrase of choice.

For us, we've chosen to see it as, " They always wondered and now we'll

all finally know for sure. Now we'll know how to tackle it. "

Speaking of tackle, I must go deal w/ a situation.

~

--- In , " seanhibbs0112 "

> I gotta tell you, those last comments make me feel sooo much

> better today....we just found out about my ds (he is 5) he has AS

> and a very very good friend of mine, just said " well you know we (as

> in all my friends) were discussing < (without me) and we all

> just thought he was kinda slow. " She didn't understand why that

> upset me. Also, why is it everyone says they are relieved, what

> does that mean????? I am not relieved I am upset, confused and

> overwhemed.

>

> thanks for reading,

>

> kim

>

[Guest guest]

Love the Holland reference. I have a friend that I've known for about

4 years w/ an autistic boy, as well. When we first started Max's

evaluation process I'd tell her my struggles w/ him as a person and

say, " Welcome to Holland, right? " Someone else gets it. Someone else

understands my struggles and can commiserate.

She has to put 2 baby gates stacked on top of each other in front of

his bedroom door (he's about 5) so he won't get up at all hours and do

God knows what kind of damage to himself or the house! We've

entertained the idea of a padlock on the front door, ourselves.

Thankfully Max has seemed to have gotten beyond that to a degree.

~

>

> Yeah, isn't it great how we are basically good parents who want the

best for

> our children and " Everyone " else knows exactly what they need and

what is

> wrong with them. My therapist recently told me a wonderful story.

>

> This woman we'll call her " Kris " was getting ready for her trip to

Italy,

> she learned the language, the culture and even picked out resteraunts

> she wanted to visit. When she got off the plane she discovered

she was

> in Holland. Of course she tried to adapt, but when she got home she

> realized all her friends had been to Italy........

>

> I am so glad that all of you have been to Holland as well.....

>

> Kim

[Guest guest]

We put on one of those metal security doors -- the deadbolt is on the

inside, and the key hangs high so others can all get to it, but ds can't

reach it. He can pull a chair over (he climbs on top of EVERYTHING) but

the key turns hard so his little arms can't get past that part. He can't

run away now. We also had to move access to the garage door opener. He's

only 5.5 though, and we hope he grows entirely out of that at some point

-- it used to be when he thought it was just funny to run off, now it's

when he's mad and he wants to 'run away.'

wrote:

>

> Love the Holland reference. I have a friend that I've known for about

> 4 years w/ an autistic boy, as well. When we first started Max's

> evaluation process I'd tell her my struggles w/ him as a person and

> say, " Welcome to Holland, right? " Someone else gets it. Someone else

> understands my struggles and can commiserate.

>

> She has to put 2 baby gates stacked on top of each other in front of

> his bedroom door (he's about 5) so he won't get up at all hours and do

> God knows what kind of damage to himself or the house! We've

> entertained the idea of a padlock on the front door, ourselves.

> Thankfully Max has seemed to have gotten beyond that to a degree.

>

> ~

>

[Guest guest]

I gotta tell you, those last comments make me feel sooo much

> better today....we just found out about my ds (he is 5) he has AS

> and a very very good friend of mine, just said " well you know we

(as

> in all my friends) were discussing < (without me) and we all

> just thought he was kinda slow. " She didn't understand why that

> upset me. Also, why is it everyone says they are relieved, what

> does that mean????? I am not relieved I am upset, confused and

> overwhemed.

>

> thanks for reading,

>

> kim

>

Hi Kim,

As a mother of two children with AS who are now 20 and 22 and are now

8 years into their diagnosis, I have learned that 99% of my friends,

doctors, psychiatrists, psychotherapists, family, etc DO NOT WANT TO

UNDERSTAND. For whatever reason " mental illness " is one of the last

prejudices. It scares the pants off almost everyone I meet and/or

talk to about it UNLESS they have had VERY close contact with someone

who is mentally interesting. Psychiatrists especially don't

understand and/or have never heard of this disorder-we have been

through 9 psychiatrists, 9 psychotherapists and 6 special education

teachers. Only 1 psychotherapist " got it " and we were lucky to have

her for 6 years until she became ill and could no longer practice.

The reason that she " got it " was because she RESEARCHED this

disability on the internet, in books, and went to special seminars

related to AS. She did this all on her own after my son's diagnosis

at the beginning of 9th grade. I feel that without her I probably

would not be here right now and I am not joking. Only 1 psychiatrist

was willing to work with us and kind of accepted the diagnosis, but

again, even though she wanted to help, she had NO IDEA what to do.

None of the " special education teachers or the " in-class therapists "

had any interest in really helping my daughter, who is affected much

more than my son, to the point that she cannot even speak to anyone

except me or her brother or her 1 friend from HS that she talks to

about twice a year. My family and my husband's(now ex) family think

that I am just a " bad parent " . This is also what my ex told me was

wrong with them.(That is why is my ex!) It must have been the way I

raised them that caused them to have this problem. It's kind of

ironic cause our 1 " good " psychotherapist told me that my ex

definitely HAS AS!

I am not telling this to scare you but to share my experience of

wanting and needing my family, friends,DOCTORS!, etc to understand

and never getting the support or even the acceptance that my kids

problems were because of AS. I have finally given up on that and am

now at peace because I have come to the conclusion that " mental

illness " is very scary to most people and when people are scared of

something they cannot possibly understand it. The other thing that

helps me, if you can believe it, is that even if, after all my

efforts, my children have to live with me for the rest of my life,

I will always have my " family " and will never have to go through

the " empty nest " syndrome. I know that sounds odd but it gets me

through many a difficult day.

The reason your friends were discussing this without you (I think)is

that it scared them. Your child is " different " and therefore scary.

They are probably " relieved " because his diagnosis is not " being

slow " . " Being slow " =retardation to them and boy I don't know if we

will ever get that " accepted " , let alone Aspergers.

I have been through so much and I can tell you that you and all of

the other parents on this board-and I know you are probably scared

out of your mind right now-who are getting this diagnosis early-mine

came at ages 14 and 12-are so lucky. You do not have to go through

parent-teacher conferences where they tell you that you just have

to " have your thumb pressed down on them all the time " (my daughter's

second grade teacher's solution), or that " something is very wrong "

but they don't know what and look at you suspiciously. You don't have

to have child services call you at work because your son-who is in

second grade-has " two black eyes " (he has always been an insomniac and

so went to school with rings under his eyes even at that age)and " you

need to come to our office right now " and " oh by the

way we already took your children right out of their classromms

without telling you and interrogated them to see if you were abusing

them " . You do not have to try every thing that you can think of-

soccer, boyscouts(and my being the scout leader), girlscouts(and my

being the girlscout leader) ballet, gymboree, chorus,clarinet

lessons, band, piano lessons,etc to get them to socialize. You have

much better resources-as far as I can see from reading this board for

the past month-than I ever had and even when I had so-

called " resources " they were that in name only because nobody had a

clue as to what would help.

Sorry this is so long but I just want to end this by saying that, in

time, with all of the resources that are out there right now, you

will get to the point of acceptance and not giving a crap what other

people think-even very close friends. You might even make new friends

who can understand what you are going through because they are going

through it too. AS is diagnosed much more frequently now and so you

should be able to find someone who is in the same situation. It will

get better. I know cause it got better for us and our only

helpful " resource " was our " good " psychotherapist and my

determination that my children were going to have a good life no

matter what.

Hang in there.

Becky

[Guest guest]

> Only 1 psychotherapist " got it " and we were lucky to have

> her for 6 years until she became ill and could no longer practice.

> The reason that she " got it " was because she RESEARCHED this

> disability on the internet, in books, and went to special seminars

> related to AS.

I feel like I have walked through the valley of the shadow of the

therapy field. I am forty-three years old, yet as young as fifteen I

was able to face up to the fact that there was something really

" different " about me in terms of just compulsive thoughts and

behaviors (compulsive hand-flapping and jumping) that I couldn't seem

to control. And so began the long dark journey through benighted

therapists, presumptuous therapists, and in one case, which I will

write about in a future post, very malicious therapists.

I had the Freudian therapist who told me it was all misdirected sexual

energy. I had the Jungian therapist who didn't give a damn about what

it was just as long I understood the basic concepts of Jungian

philosophy and tried not resist feeling depression -- he equated the

search for understanding with a flight from feeling pain. So for him

confusion and despair was good. I had the men's group facilitator who

thought I was full of s#|+ and was just looking for an excuse not to

take responsibility for my life. I have been told it was due to

allergies, eating meat, drinking coffee, not living an organic vegan

lifestyle, self-pity, not doing enough meditation, chocolate, not

doing enough exercise, that I was bipolar,and that I had a personality

disorder.

Here in South America, I was referred to one neurologist who had not

heard of Asperger's when I mentioned it to him, and he had to Google

it right there and then. He then called in a colleague who wondered if

I might have Tourette's or be schizophrenic.

Thankfully, I quickly found a much better specialist, one who studied

in the United States and is very up on the subject.

Rick

[Guest guest]

very WELL said! Becky!!!!!

>

> I gotta tell you, those last comments make me feel sooo much

> > better today....we just found out about my ds (he is 5) he has AS

> > and a very very good friend of mine, just said " well you know we

> (as

> > in all my friends) were discussing < (without me) and we all

> >