Re: Fw: Petition: Please read Autism Speaks: Don't Speak for Me

[Guest guest]

<<Many of the " advocates " framing murderous thoughts as " normal " or

" understandable " for parents of kids with autism seem to be taking their

lead from a well-promoted video named " Autism Every Day, " which is

is being used by the group " Autism Speaks " in its so-called " advocacy "

efforts.>>

Sorry, with all due respect, I thought " Autism Every day " was one of the most

realistic and well done pieces i have ever seen. It does not mean I plan to

murder my daughter.

Sherry

mom to 17 DS-Aut

[Guest guest]

The fact that there are times when an individual can feel " murderous " , does

not mean that they contemplaate murder. Haven't we all had times when we

wanted to something or felt something so strong that there were few words to

handle the emotion??

Emotions and feelings are NOT actions. We need to be allowed our emotions

and feelings.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To: < >

>Subject: Re: Fw: Petition: Please read " Autism Speaks: Don't

>Speak for Me "

>Date: Tue, 18 Jul 2006 13:35:43 -0400

>

><<Many of the " advocates " framing murderous thoughts as " normal " or

> " understandable " for parents of kids with autism seem to be taking their

>lead from a well-promoted video named " Autism Every Day, " which is

>is being used by the group " Autism Speaks " in its so-called " advocacy "

>efforts.>>

>

>Sorry, with all due respect, I thought " Autism Every day " was one of the

>most realistic and well done pieces i have ever seen. It does not mean I

>plan to murder my daughter.

>Sherry

>mom to 17 DS-Aut

>

>

>

>

[Guest guest]

Sherry wrote: Sorry, with all due respect, I thought " Autism Every

day " was one of the most realistic and well done pieces i have ever

seen. It does not mean I plan to murder my daughter.

Sherry - I am , mom to Jimmy (DS, PDD-NOS, ADHD). I was

horrified when I saw " Autism Every Day " . I thought that it was

irresponsibly slanted towards the awful moments in an autistic

family's life.

I couldn't imagine being the parent of a newly diagnosed toddler with

autism, doing a google search, and coming up with this negative,

horrific description of what life will be like from now on.

I realize that there are many families out there that have a very

difficult time with their children. I kept wondering why nobody has

helped these families to access the Medicaid waiver so that they

could get some help and respite.

I guess I'm saying is that, in my opinion, in trying to raise money

for autism research, the " Autism Speaks " group has done the

population of people with autism a grave disservice. They have

chosen to show a few severely affected children as representative of

a population that actually has a wide SPECTRUM of symptoms. " Autism

Every Day " in no way depicts what my life is like, or what my son's

life is like. I don't appreciate " Autism Speaks " implying that the

lives they depict are typical or average for people with

autism.....just as I wouldn't appreciate it if they had chosen a

group of people with autism from the other end of the

spectrum......like author Temple Grandin and others of her ilk. The

truth for most of us lies somewhere in between.

I was happy to sign the petition.

[Guest guest]

<<The fact that there are times when an individual can feel " murderous " , does

not mean that they contemplaate murder. Haven't we all had times when we

wanted to something or felt something so strong that there were few words to

handle the emotion??

Emotions and feelings are NOT actions. We need to be allowed our emotions

and feelings.>>

Amen...That's one of the things I liked about the video; it showed me I was not

a suicidal nutcake....or at least if I was I was not alone. And that is what

makes the difference....like this group where we can share feelings like these

so we don't end up isolated and usupported. I thought, like Margaret pointed

out, the issue is much more about " suicide " than " homicide " and I believe it's

extremely important for us to get these feelings out in the open and learn that

we are not alone. That in itself can prevent the actualization of the " thought "

into an " action " .

Granted there is a huge community of Autism parents who find this video

repulsive- which shows me that they have not experienced these feelings like the

many many mothers I know who have and are afraid to discuss it.

Just MY " humble " haha opinion.

Sherry

[Guest guest]

Hi ,

I think that this issue is an extremely individual experience for each

family, just how each of our children are indviduals. While I appreciate

your perspective, it is important to recognize and validate the feelings of

those children and families who go through a very difficult time on a daily

basis. Unfortunately, respite can be so difficult to acquire- the waiting

lists are long and the time available to families is so limited. In the

meantime, many parents experience extreme stress and frustration because

they feel so helpless- after a while, this can wear down a person mentally

and make them vulnerable to thoughts that are not so pleasant.

Perhaps " fair balance " would be to produce a follow-up video that shows the

various " faces " of autism , something that would truly reflect the variance

on the spectrum. I also think that a video for parents that would offer

supportive and educational resources would also be in order- there you go, a

video 3-pack!!

Mom to , DS-PDD-NOS, 34 mos.

>

>Reply-To:

>To:

>Subject: Re: Fw: Petition: Please read " Autism Speaks: Don't

>Speak for Me "

>Date: Wed, 19 Jul 2006 03:33:42 -0000

>

>Sherry wrote: Sorry, with all due respect, I thought " Autism Every

>day " was one of the most realistic and well done pieces i have ever

>seen. It does not mean I plan to murder my daughter.

>

>Sherry - I am , mom to Jimmy (DS, PDD-NOS, ADHD). I was

>horrified when I saw " Autism Every Day " . I thought that it was

>irresponsibly slanted towards the awful moments in an autistic

>family's life.

>

>I couldn't imagine being the parent of a newly diagnosed toddler with

>autism, doing a google search, and coming up with this negative,

>horrific description of what life will be like from now on.

>

>I realize that there are many families out there that have a very

>difficult time with their children. I kept wondering why nobody has

>helped these families to access the Medicaid waiver so that they

>could get some help and respite.

>

>I guess I'm saying is that, in my opinion, in trying to raise money

>for autism research, the " Autism Speaks " group has done the

>population of people with autism a grave disservice. They have

>chosen to show a few severely affected children as representative of

>a population that actually has a wide SPECTRUM of symptoms. " Autism

>Every Day " in no way depicts what my life is like, or what my son's

>life is like. I don't appreciate " Autism Speaks " implying that the

>lives they depict are typical or average for people with

>autism.....just as I wouldn't appreciate it if they had chosen a

>group of people with autism from the other end of the

>spectrum......like author Temple Grandin and others of her ilk. The

>truth for most of us lies somewhere in between.

>

>I was happy to sign the petition.

>

>

>

>

>

>

[Guest guest]

<< I kept wondering why nobody has

helped these families to access the Medicaid waiver so that they

could get some help and respite. >>

In our state we did not get medwaiver till was 11 and she got in right

under the cutoff point. Newly dxed kids are now put on a waiting list that

numbers in the 10,000s. Perhaps help and respite are readily available where you

are but this is not true for many of us. By the time we got it I knew either

or I were going to be insitutionalized and it wasn't going to be her.!

Maybe this video will bring help sooner to those who need it.

As for the rest of your post you are certainly entitled to your probably popular

opinion.

Sherry mom to 17 DS/Aut

[Guest guest]

,

<<I'm really sorry if I offended anyone with my post......and I'm sure

that I probably did. >>

No need to apologize. I should be aplogizing...or I guess I sort of did already

for being in such a poopy mood.

<<am sorry that I am not very

informed on the availability of Medicaid waiver help in other

states. (it was very easy for us to get, so I assumed it was

consistent everywhere)>>

, where do you live? we should be including your location under the

" relocating " suggestions.

We didn't even have medwaiver here till jamie was 10 and there was only one year

to get enrolled and it was kept very quiet. I only learned about it from one of

our South Florida Autism lists. Right after J got in it was cut off and the

stories of parents going without any help at all down here are horrendous.

People are moving out looking for better education and better services. There is

one single mom I know with THREE kids on the spectrum who cannot get any help at

all.

<< What I do object to in the video is that it

provides a very one-sided picture of a spectrum disorder......a

picture that is not accurate for many kids>>

You're right of course...I agree with whoever suggested the 3 volume video

collection. For me it was just the very first time I had ever seen the " dark "

side exposed. I've seen dozens of videos and shows about the superautistic kids

and even the average autistic kids, but I felt like the low functioning kids and

the families who were really suffering were just kept secret and totally

unacknowledged. Yes, there should be some sort of disclaimer that what you are

seeing represents only a % of Autistic kids etc. etc.

<<But again, my apologies to anyone I may have offended. I didn't mean

to, but I sometimes tend to word my opinions too strongly and

unequivocally.>>

You and me both :-)

Sherry

[Guest guest]

>> , where do you live? we should be including your location under

the " relocating " suggestions.

Sherry - I live in Monroe County in upstate NY - the Rochester area. I

have heard since Jimmy was born that Monroe County is one of the best

for services......so we sure aren't moving anytime soon! That has

certainly been our experience - we have a pretty great school district

(a few blips now and again, but overall pretty good) and good local

supports.

Thanks so much for your message - I really did feel badly.

Your shoot-from-the-hip friend,