Re: Disclosing

[Guest guest]

In a message dated 6/6/03 9:36:37 AM Eastern Daylight Time,

mariasp@... writes:

> On the topic of disclosing, I agree with the " Those who need to know "

> point of view. People in wheelchairs don't tell you how they got there

> as they wheel by you! ly, I think it is no one's business. OK,

> they're going to notice something is a bit " off " as soon as my child

> opens his mouth, but not every one is a boring cookie mold type person.

> There are a lot of " different " people out there with no dx of any kind,

> ( " normal, but different " , in other words marches to the beat a of a

> different drummer.) I feel that when I tell someone in a sort of

> making-an-excuse-for-behavior kind of way, I feel crappy afterwards-

> like I " betrayed " my child in desperation for people to like him (and

> maybe not think I am a bad parent????). Let's face it- if you don't

> tell a person, they will think your child is odd. If you tell a person

> about the dx, they will think he is odd AND know the reason why! Big

> deal. Of course, there are those who truly when his behavior can still

> be seen as immature, silliness or imitation. I may need to rethink when

> he is 12!

>

>

I know what you mean, but as they get older, your take on this may indeed

change. It's REALLY difficult to take a 6'1 " 185 lb 15 yr old into a fast food

restaurant, and have to deal with him spending all his time staring at the

display of toys that come in the Kids Meals, then TRY to get his lunch choice

out

of him, etc. I have found in the last few months, that in answer to the

stares and eye rolls, if I sigh and THANK them for understanding (even though

it's

quite clear they DIDN'T) and explain that he has a form of Autism, they not

only tend to loosen up, they actually go out of their way to be kind and

helpful. Several times, managers have gone to find the toy he REALLY wanted

(though

he no longer eats kids meals!) and to talk to him. This has happened at LEAST

5 or 6 times in the last couple of months, and everyone feels better

afterwards!

I personally would rather people KNOW and maybe ask for info, than think my

kid is stupid, or just a weirdo. Really, what's WRONG with taking time to

educate people?

Connie

[Guest guest]

In a message dated 6/6/2003 7:59:38 AM Pacific Daylight Time,

@... writes:

> Even before my daughter was dx'd and I suspected, I was very open about

> everything. Now I regret it. Those who don't see anything unusual about

> her think that I am imagining things, a Munchusen (sp?) by Proxy mother.

>

Theresa,

I relate. Everytime I bring up that he has something going on they look at

me like I'm an obsessive mother. I pick and chose who needs to know. I have

stopped telling anyone that it isn't critical to know. Most (but not all) of

my friends think I'm nuts but because he is in special ed preschool are paying

more attention to it. Though, they now think he only has trouble with social

skills! Whatever..

I think it needs to be told on a case by case basis and if you WANT to

explain it. Sometimes people are open to hearing it and others not. If it

helps

the situation, then its a good thing, if not, maybe you don't need to explain.

Johanna, who just disclosed to her whole family about the latest IEP....it

will be interesting to see the comments I get LOL!!!!

[Guest guest]

Connie:

I have a 14 yr old girl and a 12 yr old boy, both with Autistic spectrum

disorders. When my children are in public eye they of course attention is upon

them due to extreme loudness of fits. When I try to educate people They seem to

always reply They dont look like they have Autism. I reply and say What are we

suppose to look like. It is so amazing on how people respond to the

neurodevelopmental challenged

We are suppose to have a tail or some thing to make us look different. Even

the medical profession does it. We have a long way to go to educate.

you never judge a book by its cover (my saying)

stacy

[Guest guest]

Even before my daughter was dx'd and I suspected, I was very open about

everything. Now I regret it. Those who don't see anything unusual about

her think that I am imagining things, a Munchusen (sp?) by Proxy mother.

Those who know she's different offer you pity but not much in the way of

practical support.

And God forbid, don't talk about meds!

Theresa

[Guest guest]

>

> I know what you mean, but as they get older, your take on this may

indeed

> change. It's REALLY difficult to take a 6'1 " 185 lb 15 yr old into

a fast food

> restaurant, and have to deal with him spending all his time staring

at the

> display of toys that come in the Kids Meals, then TRY to get his

lunch choice out

> of him, etc. I have found in the last few months, that in answer

to the

> stares and eye rolls, if I sigh and THANK them for understanding

(even though it's

> quite clear they DIDN'T) and explain that he has a form of Autism,

they not

> only tend to loosen up, they actually go out of their way to be

kind and

> helpful. Several times, managers have gone to find the toy he

REALLY wanted (though

> he no longer eats kids meals!) and to talk to him. This has

happened at LEAST

> 5 or 6 times in the last couple of months, and everyone feels

better

> afterwards!

>

> I personally would rather people KNOW and maybe ask for info, than

think my

> kid is stupid, or just a weirdo. Really, what's WRONG with taking

time to

> educate people?

>

> Connie

Oh Connie!

I think that is a great way to handle that situation! I got tears in

my eyes at the image of a Mc's manager going to find him a

Happy Meal toy. And I do agree with you that a part of the problem is

that the disability becomes more apparent as they get older. When

they look like teenagers, but still act like children, it's hard. By

thanking people for understanding (even when they weren't) you are

offering people the opportunity to show their better side.

Kathy

Kathy

[Guest guest]

Let's face it- if you don't

> tell a person, they will think your child is odd. If you tell a

person

> about the dx, they will think he is odd AND know the reason why!

Big

> deal.

ROTFL!

a

[Guest guest]

Dear Connie,

I think the child's age makes a difference in our attitude. I sued to keep his

AS to myself no matter what. many of you can recall how I resisted an official

Dx. but as ds grows, both in age and in size, my attitude is changing towards

yours as you wrote down here.......

Like he said himself after getting the official dx: " well, at least I am

neither crazy nor stupid " .........

F

Re: ( ) Disclosing

In a message dated 6/6/03 9:36:37 AM Eastern Daylight Time,

mariasp@... writes:

> On the topic of disclosing, I agree with the " Those who need to know "

> point of view. People in wheelchairs don't tell you how they got there

> as they wheel by you! ly, I think it is no one's business. OK,

> they're going to notice something is a bit " off " as soon as my child

> opens his mouth, but not every one is a boring cookie mold type person.

> There are a lot of " different " people out there with no dx of any kind,

> ( " normal, but different " , in other words marches to the beat a of a

> different drummer.) I feel that when I tell someone in a sort of

> making-an-excuse-for-behavior kind of way, I feel crappy afterwards-

> like I " betrayed " my child in desperation for people to like him (and

> maybe not think I am a bad parent????). Let's face it- if you don't

> tell a person, they will think your child is odd. If you tell a person

> about the dx, they will think he is odd AND know the reason why! Big

> deal. Of course, there are those who truly when his behavior can still

> be seen as immature, silliness or imitation. I may need to rethink when

> he is 12!

>

>

I know what you mean, but as they get older, your take on this may indeed

change. It's REALLY difficult to take a 6'1 " 185 lb 15 yr old into a fast

food

restaurant, and have to deal with him spending all his time staring at the

display of toys that come in the Kids Meals, then TRY to get his lunch choice

out

of him, etc. I have found in the last few months, that in answer to the

stares and eye rolls, if I sigh and THANK them for understanding (even though

it's

quite clear they DIDN'T) and explain that he has a form of Autism, they not

only tend to loosen up, they actually go out of their way to be kind and

helpful. Several times, managers have gone to find the toy he REALLY wanted

(though

he no longer eats kids meals!) and to talk to him. This has happened at LEAST

5 or 6 times in the last couple of months, and everyone feels better

afterwards!

I personally would rather people KNOW and maybe ask for info, than think my

kid is stupid, or just a weirdo. Really, what's WRONG with taking time to

educate people?

Connie

[Guest guest]

In a message dated 6/11/03 7:14:43 AM Eastern Daylight Time, sdmoinat@...

writes:

> They seem to

> always reply They dont look like they have Autism. I reply and say What are

> we

> suppose to look like. It is so amazing on how people respond to the

> neurodevelopmental challenged

>

I always get the stereotype with my kids. Today when the sped guy was

yakking away, he kept saying, " But he could not have an IEP when he was in grade

school unless he had an academic deficit. And I kept telling him, " He's

autistic. " And he would just repeat himself as if every child with autism has

an

academic deficit. It didn't seem to connect with him that my son did fine

academically but that his processing output was affected (i.e. replying to

questions,

making conversations, doing activities that were not logical to him.) The

academic issues crept up on us as the academic curriculum because more abstract.

Anyway, long story short, I just could not get him to realize what this all

meant and he had his own idea of kids who are on IEPs. :::sigh::: I wondered

today how people get placed into such positions....

Roxanna ôô

What doesn't kill us

Makes us really mean.

[Guest guest]

<<<<<< It is so amazing on how people respond to the

neurodevelopmental challenged

We are suppose to have a tail or some thing to make us look different. >>>>>>>

, it is not always thier fault or ignorance.

we all do think of people with disabilities in stereotypes, and we have some

mental note of what different disabilities look like.

and there is definitely a stereotype out there of teh classic lowest end

functioning autistic child - the one who rocks himself constantly, living

totally in his own buble, etc..... I think even we parents, when first dealing

with that gut feeling of " something is wrong with our child " or even me when

having that gut feeling of " he has something autistic about him " ...... probably

set that thought aside at first thinking, " nah, can't be! he is verbal,

communicative, affectionate etc....... "

but I agree with you totally on:

" Even the medical profession does it. We have a long way to go to educate. "

Fania

[Guest guest]

Isn't this a shame though, we look to them for help and guidance, and it is us

who end up educating them Barb

but I agree with you totally on:

" Even the medical profession does it. We have a long way to go to educate. "

Fania

[Guest guest]

I have a son who is know 16. When he was 9, I started working with him using this same workbook. It was helpful but he had trouble paying too much attention, so we put it away for about a year. When we brought it back out. He wanted to read and work with it every night.

We had even spoken with him about his situation before we got the book. We did what it sounds like most of you have done, which is let him know, but not make a big deal about it. He knew he was different and it seemed to help him to know the reason why, even when he was 7 or 8. We also had the school counselor speak to his classmates at the beginning of each school year while he was in elementary school to explain Asperger's syndrome and why he does some of the things he does which might seem unusual. (He wasn't in the room during the talk). We found this was extremely helpful in how he was then treated by his peers.

Hope this helps.

Autism and Aspergers Treatment From: fleury.kelly@...Date: Mon, 11 Oct 2010 18:54:34 -0700 Subject: Disclosing

I'm in the same situation as you are with a diagnosed 9 year old daughter. I've recently bought a book called Asperger's....What Does It Mean To Me by Faherty. A friend recommended it to me. It's actually a workbook so the child can write in it and learn about asperger's and themselves. I've just been reading through it and haven't showed it to my daughter yet. But I think it will be really helpful.

~

[Guest guest]

Congratrs ! Back in my school years, I'd wish my teachers would've done that to help ease my peers from fear of me when I'd have seizures. As result, I was socially isolated to exercise social skills and in turn later in adult life dx'ed with Asperger's. Autism back then wasn't known to diagnose me with it.

(TBI encephalitis meningitis at age 1 by MMR vaccine)

From: Emery <linda500@...>Subject: RE: DisclosingAutism and Aspergers Treatment Date: Wednesday, October 13, 2010, 9:27 PM

I have a son who is know 16. When he was 9, I started working with him using this same workbook. It was helpful but he had trouble paying too much attention, so we put it away for about a year. When we brought it back out. He wanted to read and work with it every night. We had even spoken with him about his situation before we got the book. We did what it sounds like most of you have done, which is let him know, but not make a big deal about it. He knew he was different and it seemed to help him to know the reason why, even when he was 7 or 8. We also had the school counselor speak to his classmates at the beginning of each school year while he was in elementary school to explain Asperger's syndrome and why he does some of the things he does which might seem unusual. (He wasn't in the room during the talk). We found this was

extremely helpful in how he was then treated by his peers. Hope this helps.

Autism and Aspergers Treatment From: fleury.kelly@...Date: Mon, 11 Oct 2010 18:54:34 -0700 Subject: Disclosing

I'm in the same situation as you are with a diagnosed 9 year old daughter. I've recently bought a book called Asperger's....What Does It Mean To Me by Faherty. A friend recommended it to me. It's actually a workbook so the child can write in it and learn about asperger's and themselves. I've just been reading through it and haven't showed it to my daughter yet. But I think it will be really helpful.

~