Re: why face truth.................

January 25, 2009

I be think every one better run now for this one......Because this one

causes me great reaction and not exactly able to find of the words to

it yet////

While not angry to the poster or her views as she has a right to them

but for self not sure can agree to the whole of that article.

I to know other members will begin a much huge debate that will lead t

much upsets to the people over this article so i to be of fearful of

what the reactions are of going to be...

sondra

January 25, 2009

What an absolutely horrendous article. I know that it's the Daily Mail,

and no one

expects actual journalism from them, but still.

I hope that Tom never knows how his parents feel about him, and that they're

able to place him somewhere.

My son's behaviours are at least that bad (to the point where he can't

live at

home because we can't provide him with 2/1 care), but I can absolutely

say that no

one who has ever come in contact with him ever wishes that he hadn't

been born.

Crap " journalism " like this is part of what make it more difficult for

our children to live the

best lives that they can, and the intolerance in the article certainly

makes life more

difficult for the adults who are living with autism. It reinforces every

bad stereotype

about autism without taking into account the huge strides that we've

been able to

make as a community with therapies, funding support for families and

individuals, and

actual science.

This is absolutely irresponsible, and does a huge disservice to every

autistic person

out there. It also makes me weep for the autistic people that I know

and love- not only the

people with autism that live in my house, but the ones who are out there

whose parents and family can't even be bothered to advocate for them.

I'm married

to a Jewish man who lost almost every single one of his extended family

in WWII, and articles

like this (which reinforce the belief that some people don't deserve to

live), are part of what

made that kind of dehumanization and holocaust possible.

Jeanette

chezmark2002 wrote:

>

> i found this story, sure makes me see how fortunate i am.

>

> http://www.dailymail.co.uk/femail/article-1116602/Why-face-truth-Having-\

> autistic-child-wrecks-life-.html

>

<http://www.dailymail.co.uk/femail/article-1116602/Why-face-truth-Having-autisti\

c-child-wrecks-life-.html>

> <http://www.dailymail.co.uk/femail/article-1116602/Why-face-truth-Having\

> -autistic-child-wrecks-life-.html

>

<http://www.dailymail.co.uk/femail/article-1116602/Why-face-truth-Having-autisti\

c-child-wrecks-life-.html>>

>

> [:-?]

>

January 25, 2009

Jeanette

thank you.

January 25, 2009

you'll want to read my response to this article, in my own autistic point of

view that can only be heard on

http://speakup.today.com

>

> i found this story, sure makes me see how fortunate i am.

>

> http://www.dailymai l.co.uk/femail/ article-1116602/ Why-face- truth-Having- \

> autistic-child- wrecks-life- .html

> <http://www.dailymai l.co.uk/femail/ article-1116602/ Why-face- truth-Having-

autistic- child-wrecks- life-.html>

> <http://www.dailymai l.co.uk/femail/ article-1116602/ Why-face- truth-Having\

> -autistic-child- wrecks-life- .html

> <http://www.dailymai l.co.uk/femail/ article-1116602/ Why-face- truth-Having-

autistic- child-wrecks- life-.html>>

>

> [:-?]

>

January 25, 2009

Sondra,

It took me a whole five hours to find the words to respond to this closed minded

persons take on autism, but they finally came, pouring out of my inner being.

Yes, I have autism, and yes it was taxing on my loved ones, but no, I should not

have been aborted to spare others of my own life.

In fact, I have touched many...as have you. This woman is the equivilant of a

photographer that attempts to snap the perfect picture...all photography is done

in the attempt to capture a moment in time...only the photographer can pick

which pictures to use...

Unfortionately she chose the worst of autsim...we all know that there is good

and bad in life. Her take on autism is only the worst.

A true writer tries to show all sides of a topic...the good and bad. They go off

of facts and do not rely on only emotional opinion.

She is not a true writer...just one who picked a topic and a few moments in

time.

If nothing else, autism is unpredictable, and those who attempt to predict it

only show their true ignorance.

http://speakup.today.com

Subject: Re: why face truth.................

To: Autism_in_Girls_and_Women

Date: Sunday, January 25, 2009, 6:12 PM

I be think every one better run now for this one......Because this one

causes me great reaction and not exactly able to find of the words to

it yet////

While not angry to the poster or her views as she has a right to them

but for self not sure can agree to the whole of that article.

I to know other members will begin a much huge debate that will lead t

much upsets to the people over this article so i to be of fearful of

what the reactions are of going to be...

sondra

January 25, 2009

Well that was well put.

I was just wondering if her parents are proud she grew up to bully small

disabled children via mass media, but you were far more eloquent.

*applause*

Kassiane

>

> i found this story, sure makes me see how fortunate i am.

>

> http://www.dailymai l.co.uk/femail/ article-1116602/ Why-face- truth-Having- \

> autistic-child- wrecks-life- .html

> <http://www.dailymai l.co.uk/femail/ article-1116602/ Why-face- truth-Having-

autistic- child-wrecks- life-.html>

> <http://www.dailymai l.co.uk/femail/ article-1116602/ Why-face- truth-Having\

> -autistic-child- wrecks-life- .html

> <http://www.dailymai l.co.uk/femail/ article-1116602/ Why-face- truth-Having-

autistic- child-wrecks- life-.html>>

>

> [:-?]

>

January 26, 2009

Why, when this article spends so much time telling everyone outside of

the autistic community how hard it is to live with autism, should both

the parents and the author be subject to such comments as have been

posted so far?

The parents said nothing about abortion. The author did.

The author said nothing judgemental about abortion. The author

accused others of considering it. Not the parents.

Personally, I heard our story in this article. I heard how hard it is

to live with autism. I felt for the parents living through the guilt

with a child of 4 who shreiks at your touch. Of another child who

does not speak until 4 years old.

Bravo to the author and the parents. I hope they find a way to work

through the problems they are now having. While there is no light at

the end of the tunnel, there are moments of happiness. Its just very

hard to find them sometimes.

>

> Jeanette

> thank you.

>

January 26, 2009

stephan I to not heared any say ill of hte parents in this but the

author of it and she did share of a view that is of very

controversial on the issues of disablity studies and things of that.

I to not read in the article the parents view of it only the authors

view of it and it was of one I to much so disagree with and was of

much disappointed in. The view while it is of the right of some to

think this way it does not clearly match of my own...

Also if the child is of aware of the thinking which many with autism

do and or sensitive too this is of much an issue that may impact hims

over all view of self and life.... He is of a living being with

emotions feelings and thinking not a object of discussions.

If he is of so out of control then the reason is he and or hims

supports have not found the way to break through the barriers to help

communicate or work with him to teach him over life things in a way

to reduce of the over all fears and panic he is of displaying. is it

of hims fault those around him have not found that outlet for him

since he cannot communicate in ways other read it will be of their

responsibility to give of him access to multiple ways to reach of him

in a mutual way of connecting that works for him. right now he has no

way to express it except by reacting and responding to it in a way

others see is of wrong......

the article to me is of not one I to support the thinking too and

sorry that you disagree to this but that is of you own right to think

that way over it.

I to responded to you since you commented by attatching of my words

to you own post...

sondra

January 27, 2009

Jen,

I have pretty much the same feelings towards the article as you. I just wanted

to say how much I admire you for being such a strong mother. It takes a lot to

send your child away from home, and I hope if it ever comes to that point with

my daughter that I can be as brave and strong as you have been. My mother talks

to me about it a lot, and I usually get mad and refuse to talk about it, but

since reading different posts I realize that it might be a good choice for her

in the futurr. For right now its not at the point. She is on new meds that have

helped out with her violent outburts and self mutilation. She hasn't had a big

outburst in weeks,maybe even months. I'm just scared she is gonna get used to

the meds like the last ones she was on and will have her fits again. Thanks for

sharing your incredible story.

Sent from my BlackBerry® smartphone powered by Centennial Wireless.

Re: Re: why face truth.................

Loren- your post touched me a lot, if only because you're one of the

few other

people who I've ever heard talk on any autism list who has also had to

place a

child in a residential environment.

I've been to that extreme situation, which is why the article made me so

angry- not

because of anything to do with the family, but with the way that the

" journalist "

wrote it. My heart goes out to their entire family, because I've been

there. For 7

years (until I remarried), I was the single parents of autistic triplets

(2 girls and a

boy). At 6 years of age my son began to become aggressive and

self-injurious, which

escalated to an incredible degree over the next two years (and continues

now, 7 years

later). The last 18 months that he was at home (while we were trying to

find a placement

for him) was as close to hell as I think a family can get. If I wasn't

in physical contact with

him he would hurt himself or his sisters (and although they're the same

age, they were

considerably smaller than he was). He put me in the hospital. It was

very common for me

to have to lock the girls into their room every time I needed to make

dinner, talk on the phone,

go to the bathroom, etc. They pretty much lived on the second floor of

our house for almost a year,

because I couldn't keep them safe. You can imagine what that did to

them. I had to sit there and watch

him eat all of the skin off of his fingers, and then eat the duct-taped

on mittens that we'd put

on him in the hospital so that his hands might have time to heal. He

had pica, was a feces smearer,

and attacked people randomly- finally I told the school that I was just

not going to answer any of

their calls to go and bring him home, because I needed to sleep sometime

(and clean the shit

off of the walls, which is often a much bigger job than people think it

will be lol). He couldn't sleep in

his own room, because when he got bored (he didn't really sleep), he'd

eat his mattresses. Tear

off the piping with his teeth, rip open the cupboard, and eat all of the

stuffing from the middle.

Because we often " slept " in the same room, I went without sleep for a

very long time, which as you

know, doesn't help with decision making and coping faculties. I thought

that the first year of

nursing triplets was bad, but at least at that point they were pretty

immobile.

At that point I got about 16 hours of respite care a week, which was

mainly used up with people

taking the girls out or working with them, because so many people at

that time were too afraid to work with

Dylan. After I finally decided that he needed to be placed somewhere

that had enough staff to keep

him safe, it took almost 18 months for us to find a placement for him.

At one point (after a particularly

bad week when he'd pushed me down the stairs so that I couldn't lift him

to change his diapers (yes, he

wasn't trained at 6), our local Children's Aid Society said that they

could take him for a weekend so

that I could try to heal, and maybe actually talk to the girls, but the

only place that they had to put

him was a private cell in our city's jail. I puked when I got off of

that phone call. There was a lot more (don't even get me started on

finances and isolation), but you get the drift. We finally found a

placement for him 18 months later, after a particularly horrifying week

when he'd grabbed one girl by the hair and smashed her head into the

wall so hard that we thought that she had a fractured skull, and I told

Children's Aid that I had about two weeks of non-sleep left in me before

I took him into our local ER with a note on him saying that I was

abandoning him. Anyone who has ever had to choose between which of

their children stays at home can understand how painful that decision

was- in our case it came down to me being able to help two children, and

keep the other one safe.

He's been in a group home for almost 7 years now, and it's a good

place. Not as good as if he was in a family who had the resources to

take care of him, but compared to most places, it's very good. It's in

a different city so we only get to see Dylan once a week now, but at

least I know that he is safe, that my girls are safe, and that everyone

is getting the best care possible because of the only choice that I

could have made. As you probably know though, even knowing that you've

made the right decision does not ever stop the agony of not having your

child at home. I did sacrifice one child for the needs of two others,

and that decision will tear me apart for the rest of my life.

When I read that article I was furious- not because of the family, but

because of the way that the journalist phrased everything. Even when my

son was at his worst (he's doing pretty well at the moment), I was very,

very well aware that he was doing his best. He didn't attack people or

hurt himself because he was malicious- he did it because he has no other

way to communicate, and we have yet to find any way that he can

communicate with us. When he was not lashing out, he was the sweetest,

most lovable boy imaginable. He is not defined by his autism, and I

have an infinite amount of respect for how he has to face every single

day with challenges that I can't even imagine living with, and he STILL

manages to be happy, and loving, and trying so hard. No matter how hard

it has been for me as a parent sometimes, it's still so much worse for

my kids. My kids are awesome. Dylan wakes up happy every morning, and

except for the times when he lashes out at himself or others, he works

incredibly hard to do even the small things that people take for

granted. My daughter is one of the smartest people that any of

us have ever met, so it's a constant challenge to try to work with her

intelligence to help her overcome her challenges. My daughter Kirsten

not only had to go through cancer in addition to the autism, and

although she's struggling with a lot of things at the moment (all of the

kids are going through puberty), she still manages to be one of the

sweetest and most loving people that I've ever met. I at least can

talk to people, do research on what I can do to help them, and vent in

appropriate ways. They can't, for the most part.

Which is why I get so angry when people dehumanize autistic people, and

make *everything* *about* their autism. Watch some of Baggs'

videos, <http://ca.youtube.com/watch?v=JnylM1hI2jc>and then go and read

her blog <http://ballastexistenz.autistics.org/>. To outward

appearances she has likely the same " functioning level " as my son, but I

defy anyone to say that she doesn't contribute anything to the world, or

that the world would be better without her in it. Look at the Autistic

Self-Advocacy Network, <http://www.autisticadvocacy.org/>

and the wonderful work they do for people all over the spectrum (yes,

even " low-functioning " ) people.

It seems to me (from what I've seen over the past 11 years since my kids

were diagnosed), that as a society we're finally moving towards a

recognition of people with autism as " people " first. Even the language

that most of the mainstream press uses is heading towards acceptance and

understanding, rather than the " lock them away in the upstairs closet

because no parent can possibly deal with it " mentality. Articles like

this just reinforce old stereotypes, and make it more difficult for our

kids to be accepted. As we move closer to the adult years in our house

we're starting to have to ponder decisions about employment, adult

placements, etc. I'd like to think that by the time my kids are adults

(which isn't too far away) that they will be able to go out into the

community and have people recognize their strengths and weaknesses

instead of just filing them away in the " autism " corner of their brain.

Would I have chosen to have autistic kids? Of course not. I wanted

equestrian superstar/Nobel Peace Prize winning/non-nerdy/blissfully

happy children who never had a challenge in their life that they

couldn't overcome. I'd also like to live in a world where every man

looked like a cross between Clooney and Clive Owen, and books are

free and I have a 4 star chef on call 24 hours a day. Amazingly enough,

I didn't get any of those wishes, and yes, I wish to God or whoever that

my kids didn't have to face the challenges that they do every day.

Aside from caring for them, and providing them the best possible

environment for them to flourish, the one thing that I can do for them,

is to at least try to make the outside world realize that they are

people who are not solely defined by their autism, and that the world

would be a poorer place without them.

I'm sorry that this is so long. I completely agree with you that

services are pitiful in most parts of the world (we're very lucky that

we live in North America/Europe), and that they need to be increased

across the board. Now that we're moving into the adult service world

it's a whole new ballgame- in most areas, services pretty much stop when

kids become adults, and that's a huge problem that's only going to get

worse.

Loren- thank you so much for posting- aside from a few people in my

province that I've met (we had to sue the govt. to get custody of our

kids back, because at that point the only way to get a placement was to

give up custody of your child to Children's Aid), I think that you're

only the 4th or 5th person that I've met online who has had to place a

child in someone else's care. It's certainly something that no one in

the autism world ever talks about, and it is a real lifeline for me to

hear of other people who have had to do it, and are still coping.

And I think that I should apologize to everyone on the list for posting

the article (with my rant) in the first place- I'm sorry that it created

controversy. Hopefully we can all realize that regardless of our views

on the article, we're all trying to do the best for our kids.

Jeanette

loren hofmeister wrote:

>

> I've hesitated to reply because I don't want to offend anyone, but I

> can't believe how one sided the response has been to this thread. We

> know that Autism is broad spectrum. Can no one here acknowledge that

> this article represents an extreme situation? I typically find that many

> with extreme situations don't write often on these groups and they don't

> often attend support groups because their situation demands so much from

> them that they can't even seek out the help they need. This also brings

> out another point of there not being enough services or support or

> trained personnel or financial aid . What do you do if you don't have a

> spouse? Your friends no longer call or come over. You avoid

> conversations with people and vice versa because what you have to say is

> so bizarre that you don't relate to other NT family experiences. The

> family on both sides either doesn't know what to do or doesn't want to

> get involved. It gets to a point that you can't even find someone to

> watch over your child because they are afraid for their safety. You

> can't afford any more because you have sacrificed your career to take

> care of your children. You can't get aid because you are told that you

> make too much money but still can't make ends meet but if you stop

> working completely you will surely lose your house and then where will

> you go. How many have spent their retirement money and are now wondering

> who will take care of them when the time comes - perhaps the other NT

> siblings. How many of you lock yourselves in your bedroom each night for

> your own safety? How many are facing a situation that instead of getting

> easier gets harder and harder as the child gets older? You try all kinds

> of things with only limited success? As the autistic child demands more

> and more of your time you are spending less and less with your other

> children to a point that they start to resent their sibling and you. You

> can't listen to music anymore or watch a movie - you barely get to leave

> the house anymore. Being able to get out for a short time to be able to

> buy food is a blessing. Am I the only one that can at least try to see

> their point of view without judging them? When you are in extreme

> situations it often warrants extreme measures. I've heard of parents

> divorcing to reduce reported income to get benefits. Parents have quit

> jobs and moved to other parts of the country to get better benefits.

> I've personally been to the brink and back again - still trying to

> recover and rebuild. Do we love our children - yes of course we do - and

> most parents would sacrifice themselves for their children. The thing is

> - exactly how much are you willing to sacrifice? Would you sacrifice one

> of your children to save another - maybe sacrifice 2 children or the

> whole family or the marriage - where does it stop when nothing works?

> None of you really want to be in the situation of having to make those

> kinds of choices. It tore me apart to have to put my daughter in a

> residential school. I felt like I was sacrificing her to save the rest

> of us. The fact was I was out of options. Did I ever sit down and

> wonder how my life might have been different if my daughter wasn't born

> Autistic? Yes I have. Loren

>

January 27, 2009

I think that one of the huge challenges that we face as

parents of autistic kids is trying to match interventions

and therapies to our children. ABA was helpful

for one of my girls, useless to a second girl, and incredibly

damaging to my son.

The few biomedical interventions that we've tried have not only

been useless, but very expensive as well. There are a lot of people

making money off of desperate parents, and who have no hesitation

at all about just doing it for the money.

I think that after years of looking at therapies and interventions

(from ABA to TEACHH to Son-Rise to floor-time to swimming

with dolphins, secretin, vitamin therapy , chelation etc), a lot of them

are

designed to make it easier for people to deal with autistic children

( or at least to make parents feel good about trying something), and

not necessarily designed to help the autistic person. I have no

doubt that a percentage of non-invasive interventions help a

percentage of autistic people, but it's pretty difficult to find out

what's actually going to help your child.

I wish your family and daughter all the luck in the world. And you

are right (I believe), in saying that what we all want is for our kids

to be properly cared for, and happy.

Jen

Schofield wrote:

>

> I would rather focus on what my daughter is capable of doing and

> strengthening those areas, and to make certain that she is properly

> cared for and happy.

>

> I have tried those things, but all the biomeds have done is to

> increase her weight.

>

> ABA is only useful in teaching those around my child how to help her.

> We have used ABA since she was 3 years old in varying degrees of

> intensity. No practioner has lasted more than 9 months as they " Can't

> cope with the level of negotiation " that my daughter requires.

> Besides, ABA has taught us how to behave around our daughter. It has

> done nothing to teach our daughter how to behave in a non autistic

> manner. (Not that I want her to)

>

> >

> > , have you been able to try biomedical, ABA, any of that? I

> > have met kids that do not respond to anything, and I cannot imagine.

> I

> > also wonder how many people out there don't have the

> > knowledge/finances to try these things. It's why it's so important to

> > get the services/info out there so these sweet kids with all these

> > problems can get the help they need and families can enjoy each other

> > again.

> >

> > Debi

> >

> > -

> >

>

January 27, 2009

> I think that after years of looking at therapies and interventions

> (from ABA to TEACHH to Son-Rise to floor-time to swimming

> with dolphins, secretin, vitamin therapy , chelation etc), a lot of

> them

> are

> designed to make it easier for people to deal with autistic children

> ( or at least to make parents feel good about trying something), and

> not necessarily designed to help the autistic person.

Wow, I couldn't disagree with this more. Every single intervention we

have done with my daughter (whether sensory integration, NAET,

homeopathy, chiropractic, RDI, gym therapy, targeted supplementation,

etc.) was carefully researched and based on HER specific needs,

whether they were physical, emotional or spiritual, and designed to

help her feel, function and cope better in this world. And all have

been beneficial to her in their own way. I don't enjoy seeing my

daughter in physical and emotional pain, so yes I certainly do feel

better when she is happier and healthier as a result of these

interventions, combined with a supportive, loving environment. What

parent wouldn't? But I don't do it just so my life is more convenient

and so I can " deal " with her better. I do it so she can have the best

life possible. And it doesn't mean I don't accept who she is or

cherish her in every moment. The light in her eyes and her smile, her

deep bear hugs and loving heart are validation to me that she knows

exactly how much she is loved and cherished, and how grateful she is

for all the people in her life who are helping her be the person she

wants to be.

January 27, 2009

I think you are both right. It is sometimes they help parents and

sometimes they actually do make our children's lives richer. But certainly

there are many charlitain treatments out there that only want financial gain

I find the autism quackery site useful . Some parents want their

children to be typical at any cost. It is hard to find balance between

accepting our limitations/ sometimes misplaced selfish desires with that of

accepting the child and loving and cherishing their differences. I catch

myself grieving my own loss but my child does not benefit in any way from my

emotion. Certainly I want to facilitate her development as for my other

child without the dx's. I struggle to discern, " is it for her or myself " .

She can't tell me in words so on I go just trying to do my imperfect best

with faith and intention to help more than I harm.-------Original

Message-------

From: cathylynn2

Date: 1/27/2009 2:13:08 PM

To: Autism_in_Girls_and_Women

Subject: Re: Re: why face truth.................