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Re: Sensitivities

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PennY I got what you were trying to say. You just wanted to figure out what

terms would be acceptable to both parties in order to cut down on offending

someone. Maybe Kassi has some idea's of what she thinks she would prefer people

to say?

Pennie

Abby's mom

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, I'm not arguing if autism is GOOD or BAD. You've missed the

point, too. Autism just IS. Human beings are all equal, and deserve to

be treated as such. There are no " less thans " .

What I'm commenting on is something I've noticed over the past seven

years as I've heard many (MANY!) presentations by adults on the autism

spectrum and read even more books by authors on the autism spectrum, and

often (not always) there is a great amt of disdain and criticism for

parents of younger children who are working to " cure " the autism in

those children. I heard more than once at the conference last weekend,

" Cure HAM, not AUTISM. "

And the disdain, the criticism, the DIVIDE between the two " sides " is,

in my observation, SEMANTICS. When I heard the individuals on the

autism spectrum talk last weekend, the message was, help us feel better

but help us live with our differences. Shore said to give them

sensory support, biomedical help and educational assistance to allow

them to live with their differences.

Parents, on the other hand, tend to talk about autism as if it IS the

stuff the kids NEED the sensory support, biomedical help and educational

assistance FOR, BECAUSE OF.

Penny (who is going to give up because I don't think I'm being

understood)

>

> Sometimes, I think we get up in the morning thinking " what will offend

us today? "

>

> I don't mean to hurt anyone " s feelings, but as long as we argue

semantics, we fail to target the main issues. I am tired of my daughter

being treated like a second class citizen.

>

> My little angel is caring and kind, but not if you overwhelm her. My

little angel is brilliant, but please don't touch her.

>

> As long as we keep arguing how she should be refered to, or if autism

is good or bad, we are missing the main point.

>

> She is suffering, and we must find a way to stop this suffering.

>

> She will never be what you want her to be, but she is unique in all

the world. Appreciate her while she is here.

>

>

>

>

>

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I just read the replies to your post. It seems that I read a wonderful heart

felt poem that is so much like my daughter while others are still so caught up

on " what is autism to be called " . I hope some will slow down enough and read

this for what is is saying.

thank you for the message . We are all in this together.

Becky in GA

Belcher wrote:

Sometimes, I think we get up in the morning thinking " what will offend

us today? "

I don't mean to hurt anyone " s feelings, but as long as we argue semantics, we

fail to target the main issues. I am tired of my daughter being treated like a

second class citizen.

My little angel is caring and kind, but not if you overwhelm her. My little

angel is brilliant, but please don't touch her.

As long as we keep arguing how she should be refered to, or if autism is good or

bad, we are missing the main point.

She is suffering, and we must find a way to stop this suffering.

She will never be what you want her to be, but she is unique in all the world.

Appreciate her while she is here.

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PennIE, yes, *AND* when we NT's are able to see how Auties and Aspies

define " autism " , how they define themselves, and use the term

appropriately, we can all move forward together. I don't think the

non-autistic community has been using the term correctly.

In my voice & diction classes in college, I was taught that the correct

pronunciation of a word is the way the natives pronounce it. For

example, in parts of Missouri, the people who live there pronounce it as

" miz-UR-uh " . There's no " ee " sound at the end. Well, I propose we come

up with a definition we agree on so we have a common framework from

which to talk, interact, work.

And then maybe we can straighten out the DSM diagnostic critera BEFORE

the DSMV is published in stone (print). The DSM's description of autism

is inaccurate (that's an understatement).

We are going to have more, not fewer, obstacles advocating for our

children (I'm addressing 's thoughts now) until we straighten out

the semantics, in my opinion.

>

> PennY I got what you were trying to say. You just wanted to figure out

what

> terms would be acceptable to both parties in order to cut down on

offending

> someone. Maybe Kassi has some idea's of what she thinks she would

prefer people

> to say?

>

> Pennie

> Abby's mom

> **************Play online games for FREE at Games.com! All of your

favorites,

> no registration required and great graphics †" check it out!

>

(http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir\

=

> http://www.games.com?ncid=emlcntusgame00000001)

>

>

>

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If semantics divide us, are inflammatory to some (the " c " word is

inflammatory), then semantics at some level keep us from being " all in

this together " as Becky says. I'm saying the same thing Becky and

are saying--we are all in this together, but sometimes, I've noticed,

observed, experienced, that we don't *sound* like we are.

Jay Kochmeister, Sharisa's dad, told me this weekend that Sharisa puts

it this way: " Preserve the gifts and throw out the garbage. " And that,

I believe, is how we are " all in this together " .

PennY

>

> I just read the replies to your post. It seems that I read a wonderful

heart felt poem that is so much like my daughter while others are still

so caught up on " what is autism to be called " . I hope some will slow

down enough and read this for what is is saying.

>

> thank you for the message . We are all in this together.

>

> Becky in GA

>

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I agree. Like my daughter, she'll tell you autism is cool but she

hates being sick all the time from the autism. So, I think she likes

who she is, she hates the sicknesses the keep her from feeling good,

that also greatly intensify, if not cause, her autism.

In nursing I am learning that the nurse is to treat the person

holistically-- mind, body, spirit. Just like autism or any other

condition. There is a part that impacts the mind, the body, and the

spirit. The goal in nursing is to bring the person to the greatest

level of how they view wellness. That is what I, and most parents,

want for their child, the most optimal view of wellness. GI,

immunological, nervous, skeletomuscular problems need to function

optimally, or at least to the level the person desires. Since really

young kids can't seek that out, we parents must. As kids get older we

must slowly turn over the reigns of their bodies from us to them, just

like NT kids.

Debi

>

> We are going to have more, not fewer, obstacles advocating for our

> children (I'm addressing 's thoughts now) until we straighten out

> the semantics, in my opinion.

>

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still thinkin' about this.

My daughter has auditory processing delays. Auditory processing delays

are separate from autism, but the school and the doctor have never

looked at auditory processing as co-occuring with the autism--so the

auditory processing has not been addressed in the same way it would have

been addressed in a child not labeled with autism.

The son of a friend is struggling w/ reading. The parents are paying a

tutor because the school isn't doing enough. He's in an ASD program,

and the school views the reading problem as PART of the autism. So,

he's not getting the same reading evals that gen ed students are and

he's not getting the remediation and intervention that gen ed students

with the same reading problems are getting.

> >

> > We are going to have more, not fewer, obstacles advocating for our

> > children (I'm addressing 's thoughts now) until we straighten

out

> > the semantics, in my opinion.

> >

>

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An Auditory Processing Disability is not a result of Autism. That is like saying

a vision problem is a result of Autism. APD affects memory, reading,

communication, etc. You should be getting support from the school and should

have an audiologist do a comprehensive assessment. The delivery of service would

be different for every child regardless of their co-morbid disabilities. Or if

APD was the only disability. If the district has not assessed you have a child

find issue. And you have a FAPE issue. Districts are slippery.

Melonie T. Matjeka

Special Education Advocate

EMPOWERED PARENTS*

818/884-4288 ofc

818/610-8198 fax

www.ideallives.com

Tisha Pratt, Billing Mgr

909/899-1449 ofc

909/899-1584 fax

e.parents@...

Re: Sensitivities

still thinkin' about this.

My daughter has auditory processing delays. Auditory processing delays

are separate from autism, but the school and the doctor have never

looked at auditory processing as co-occuring with the autism--so the

auditory processing has not been addressed in the same way it would have

been addressed in a child not labeled with autism.

The son of a friend is struggling w/ reading. The parents are paying a

tutor because the school isn't doing enough. He's in an ASD program,

and the school views the reading problem as PART of the autism. So,

he's not getting the same reading evals that gen ed students are and

he's not getting the remediation and intervention that gen ed students

with the same reading problems are getting.

> >

> > We are going to have more, not fewer, obstacles advocating for our

> > children (I'm addressing 's thoughts now) until we straighten

out

> > the semantics, in my opinion.

> >

>

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I don't like the word cure. Not for " autism " . It's too big. It's being used too

broadly.

Cure epilepsy. CURE CELIAC. But autism? THat's like...curing...asianness.

Mitigate impairments, sure.

But cure? That's frightening.

>

> Subject: Re: Re: Sensitivities

> To: Autism_in_Girls

> Date: Thursday, October 23, 2008, 6:33 AM

> PennY I got what you were trying to say. You just wanted to

> figure out what

> terms would be acceptable to both parties in order to cut

> down on offending

> someone. Maybe Kassi has some idea's of what she thinks

> she would prefer people

> to say?

>

> Pennie

> Abby's mom

> **************Play online games for FREE at Games.com! All

> of your favorites,

> no registration required and great graphics – check it

> out!

> (http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir=

> http://www.games.com?ncid=emlcntusgame00000001)

>

>

>

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I get it! I get it!

I didn't for a while...but I do now!

>

> > From: Ploveabby@... Ploveabby@...

> > Subject: Re: Re: Sensitivities

> > To: Autism_in_Girls

> > Date: Thursday, October 23, 2008, 6:33 AM

> > PennY I got what you were trying to say. You just wanted to

> > figure out what

> > terms would be acceptable to both parties in order to cut

> > down on offending

> > someone. Maybe Kassi has some idea's of what she thinks

> > she would prefer people

> > to say?

> >

> > Pennie

> > Abby's mom

> > **************Play online games for FREE at Games.com! All

> > of your favorites,

> > no registration required and great graphics †" check it

> > out!

> >

(http://pr.atwola.com/promoclk/100000075x1211202682x1200689022/aol?redir\

=

> > http://www.games.com?ncid=emlcntusgame00000001)

> >

> >

> >

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I agree with Kassi. It sounds like " cure Downs syndrom " and I dont want those I

know with DS changed either.

--- Den tors 2008-10-23 skrev Kassi :

Från: Kassi

Ämne: Re: Re: Sensitivities

Till: Autism_in_Girls

Datum: torsdag 23 oktober 2008 20.34

I don't like the word cure. Not for " autism " . It's too big. It's

being used too broadly.

Cure epilepsy. CURE CELIAC. But autism? THat's like...curing. ..asianness.

Mitigate impairments, sure.

But cure? That's frightening.

> From: Ploveabbyaol (DOT) com <Ploveabbyaol (DOT) com>

> Subject: Re: Re: Sensitivities

> To: Autism_in_Girls@ yahoogroups. com

> Date: Thursday, October 23, 2008, 6:33 AM

> PennY I got what you were trying to say. You just wanted to

> figure out what

> terms would be acceptable to both parties in order to cut

> down on offending

> someone. Maybe Kassi has some idea's of what she thinks

> she would prefer people

> to say?

>

> Pennie

> Abby's mom

> ************ **Play online games for FREE at Games.com! All

> of your favorites,

> no registration required and great graphics – check it

> out!

> (http://pr.atwola. com/promoclk/ 100000075x121120 2682x1200689022/ aol?redir=

> http://www.games. com?ncid= emlcntusgame0000 0001)

>

>

>

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