Ugh. So, remember That Video?

[conuly]

Sure you did, I posted all about it!

I'm sure I knew this - it's reminding me that I knew it - but I forgot. They made it longer (god knows why) and are showing it at Sundance this year. It's sure to be the feel-good movie of the festival!

There's a petition about this. Or, at least, about disagreeing with everything the video stands for, or at the *very* least, disagreeing with the comments that "almost everybody" wants to kill their autistic kids. Y'know, deep down inside.

There's a whole website devoted to videos about people loving their autistic kids... why can't that be at Sundance?

(That said, if anybody can snag me a copy of the full length video, without in any way contributing money to the parent organization that created that dreck, I'd be grateful to you. I have a perverse desire to see it.)

Comments

[kibbles.livejournal.com]

Well I will say that parenting someone like T is one of the, if not the hardest thing I've ever done. I really do have sympathy and feel that many in the autistic community brush that off, or blame me, or think I am some monster for saying that.

But I don't feel like that ALL THE TIME. And the methods we're using to make life go better are working nicely. He DID melt down like that SEVERAL times a day. But a REALLY good OT well versed in sensory issues is worth their weight in gold. Seriously.

That video is one of the most dangerous thing a parent new to this all could EVER see. EVER. I have heard of parents breaking down after seeing it, and I myself wanted to THROTTLE the filmmaker. Because it makes it look HOPELESS. Now the prognosis for my son may be that he kind of stays how he is. But to me thats not loss of hope, you know? It's changed expectations. I hope he's happy, and I think that's all a parent really wants. I WOULD LIKE him to live independently, to communicate, etc. But I want him happy.

I also want K happy and F happy. And me. And D. I like happy. Happy is a beautiful thing.

I feel so bad for parents who are caught up in a certain mindset, that I see in parent support groups, who are running ragged with some of the therapies and the costs they have. Yeah I run around like a lunatic, and my time is spent with T a lot of the time, but hopefully respite will help, and help the other kids too. You gotta ADJUST to life. What if K decided she wanted to be a professional dancer at a young age, and THAT had me running around? I'd have to readjust everyone too! Or we'll adjust when we go to school, yada yada yada.

I hate that video, and I hate that message. I want a middle of the road, 'hey, it can be really tough and some help would be appreciated, but I don't want my kid dead but I would really like if my kid could, you know, be happy, not self injure, potty train, and communicate without frustration.' But when did middle of the road ever win any awards or get any publicity?

[kibbles.livejournal.com]

I almost signed the petition except for the denial that life with an autistic child CAN be like that.

I don't know why people want to deny that, if it is shame or what, but because of that, that is the one reason I can't sign it.

I will also say that just because you wonder what life would be like killing yourself and/or your kid doesn't mean you are going to DO it. But life is rough for parents, and again, it makes people put on false faces like we have to make believe our children are good and it doesn't bother us and we are failures as parents because of this. The video sucks but the other side ain't roses either. Hurts.

[conuly]

Kibbles, we're coming at this from different perspectives, but I have never once heard somebody say that life couldn't be hard for parents of autistic kids, or that being autistic was all fun and games and cool magic tricks. I know I wasn't an easy kid to raise, and I've heard that same sentiment from other people on the spectrum. And I know that while many problems can be alleviated with proper management of society (for lack of a better phrase), many others can't. Certain volumes of noise will always be too much for me to deal with, but other people have the right to make that noise within reason.

Nobody wants to deny that life can be hard - but this video is denying that life can be worth living if it isn't "normal".

And that's just not right.

[kibbles.livejournal.com]

Oh I hate hate hate hate the video but I wish there was a middle ground to show that SOMETIMES it is like that, and sometimes it's a blast. And sometimes you're just sitting around eating dinner.

I remember a thread where someone said that if there was a cure for the lack of communication stuff (not lack of SPEECH but communication) that it wouldn't be fair to impose that on the child/person because they couldn't communicate if they wanted it or not.

That's the extremist position on the 'other side' that rubs me the wrong way. Some things to me are important for quality of life, quality of life is important, and parents have to make decisions for ALL their children. It's our responsibility to do so. We can't leave our kids to just exist. But people get bristly like every decision you make for an autistic child is forcing them into a NT life. Not everyone, but there are extremists like that and I just want to shake my finger at them menacingly or something.

The general public needs to be educated that life with autism can be fine, but have to understand too that the 'normal' looking kid who is stripping naked or running in the street or biting until mommy BLEEDS or screaming in the store isn't the product of bad parenting. That video COULD have done that but went WAY too far. Plus, again, the LACK OF FATHERS in it. Ug.

[leora.livejournal.com]

I know this is off-topic, but your first paragraph feels like it'd fit well into a thread on real relationships. A lot of things get romaticized or idealized, and people think it'll all be the fun, simple part... But in real life interactions with real people in close relationships be them romantic or parental, sometimes it's utterly awful and hard, sometimes it's a blast, and sometimes it's just eating dinner.

I know that there are differences between raising an autistic child and a neurotypical one, but still, I think that some of the basic sentiment is generally true.

I think I've just seen too many people expect romantic relationships to be flowers and romance all the time, and it annoys me when people just break up as soon as the actual work of making a relationship work happens, as if something taking work or not being magically perfect means it must be the wrong person for you. If you haven't faced that idea, then this comment may just seem silly.

[kibbles.livejournal.com]

It would fit well, because that's how real relationships are! Romantic ones, parental ones, friendships. Let me tell you, today was a so-so T. day (because he was being clingy, nothing more) and a HORRID K day, because she was antagonizing her brother F, and a neutral F day, who wasn't being good, or bad, just was.

Oh and a bad D day (husband) because he was supposed to send me money and was watching 24 instead and I had to call him to tell him to send it, and he whined about it and tried to guilt me about it. :P

I think the differences between NT and not are the coping strategies, on the surface. In my case with T, his inability to communicate (not talk, communicate) is the difficult part. That's the one part that isn't good/bad/neutral, that bit is pretty much rough across the board. Thank goodness the meltdowns kinda stopped because that was worse. The self injury and the injuring others.

I guess the "Amsterdam" Ann Landers/Dear Abbey thing is kind of relevant, as preachy as it is. Although having been there, she's got it all wrong. :P (Actually been there metaphorically and literally.)

[kibbles.livejournal.com]

Well I will say that parenting someone like T is one of the, if not the hardest thing I've ever done. I really do have sympathy and feel that many in the autistic community brush that off, or blame me, or think I am some monster for saying that.

But I don't feel like that ALL THE TIME. And the methods we're using to make life go better are working nicely. He DID melt down like that SEVERAL times a day. But a REALLY good OT well versed in sensory issues is worth their weight in gold. Seriously.

That video is one of the most dangerous thing a parent new to this all could EVER see. EVER. I have heard of parents breaking down after seeing it, and I myself wanted to THROTTLE the filmmaker. Because it makes it look HOPELESS. Now the prognosis for my son may be that he kind of stays how he is. But to me thats not loss of hope, you know? It's changed expectations. I hope he's happy, and I think that's all a parent really wants. I WOULD LIKE him to live independently, to communicate, etc. But I want him happy.

I also want K happy and F happy. And me. And D. I like happy. Happy is a beautiful thing.

I feel so bad for parents who are caught up in a certain mindset, that I see in parent support groups, who are running ragged with some of the therapies and the costs they have. Yeah I run around like a lunatic, and my time is spent with T a lot of the time, but hopefully respite will help, and help the other kids too. You gotta ADJUST to life. What if K decided she wanted to be a professional dancer at a young age, and THAT had me running around? I'd have to readjust everyone too! Or we'll adjust when we go to school, yada yada yada.

I hate that video, and I hate that message. I want a middle of the road, 'hey, it can be really tough and some help would be appreciated, but I don't want my kid dead but I would really like if my kid could, you know, be happy, not self injure, potty train, and communicate without frustration.' But when did middle of the road ever win any awards or get any publicity?

[kibbles.livejournal.com]

I almost signed the petition except for the denial that life with an autistic child CAN be like that.

I don't know why people want to deny that, if it is shame or what, but because of that, that is the one reason I can't sign it.

I will also say that just because you wonder what life would be like killing yourself and/or your kid doesn't mean you are going to DO it. But life is rough for parents, and again, it makes people put on false faces like we have to make believe our children are good and it doesn't bother us and we are failures as parents because of this. The video sucks but the other side ain't roses either. Hurts.

[conuly]

Kibbles, we're coming at this from different perspectives, but I have never once heard somebody say that life couldn't be hard for parents of autistic kids, or that being autistic was all fun and games and cool magic tricks. I know I wasn't an easy kid to raise, and I've heard that same sentiment from other people on the spectrum. And I know that while many problems can be alleviated with proper management of society (for lack of a better phrase), many others can't. Certain volumes of noise will always be too much for me to deal with, but other people have the right to make that noise within reason.

Nobody wants to deny that life can be hard - but this video is denying that life can be worth living if it isn't "normal".

And that's just not right.

[kibbles.livejournal.com]

Oh I hate hate hate hate the video but I wish there was a middle ground to show that SOMETIMES it is like that, and sometimes it's a blast. And sometimes you're just sitting around eating dinner.

I remember a thread where someone said that if there was a cure for the lack of communication stuff (not lack of SPEECH but communication) that it wouldn't be fair to impose that on the child/person because they couldn't communicate if they wanted it or not.

That's the extremist position on the 'other side' that rubs me the wrong way. Some things to me are important for quality of life, quality of life is important, and parents have to make decisions for ALL their children. It's our responsibility to do so. We can't leave our kids to just exist. But people get bristly like every decision you make for an autistic child is forcing them into a NT life. Not everyone, but there are extremists like that and I just want to shake my finger at them menacingly or something.

The general public needs to be educated that life with autism can be fine, but have to understand too that the 'normal' looking kid who is stripping naked or running in the street or biting until mommy BLEEDS or screaming in the store isn't the product of bad parenting. That video COULD have done that but went WAY too far. Plus, again, the LACK OF FATHERS in it. Ug.

[leora.livejournal.com]

I know this is off-topic, but your first paragraph feels like it'd fit well into a thread on real relationships. A lot of things get romaticized or idealized, and people think it'll all be the fun, simple part... But in real life interactions with real people in close relationships be them romantic or parental, sometimes it's utterly awful and hard, sometimes it's a blast, and sometimes it's just eating dinner.

I know that there are differences between raising an autistic child and a neurotypical one, but still, I think that some of the basic sentiment is generally true.

I think I've just seen too many people expect romantic relationships to be flowers and romance all the time, and it annoys me when people just break up as soon as the actual work of making a relationship work happens, as if something taking work or not being magically perfect means it must be the wrong person for you. If you haven't faced that idea, then this comment may just seem silly.

[kibbles.livejournal.com]

It would fit well, because that's how real relationships are! Romantic ones, parental ones, friendships. Let me tell you, today was a so-so T. day (because he was being clingy, nothing more) and a HORRID K day, because she was antagonizing her brother F, and a neutral F day, who wasn't being good, or bad, just was.

Oh and a bad D day (husband) because he was supposed to send me money and was watching 24 instead and I had to call him to tell him to send it, and he whined about it and tried to guilt me about it. :P

I think the differences between NT and not are the coping strategies, on the surface. In my case with T, his inability to communicate (not talk, communicate) is the difficult part. That's the one part that isn't good/bad/neutral, that bit is pretty much rough across the board. Thank goodness the meltdowns kinda stopped because that was worse. The self injury and the injuring others.

I guess the "Amsterdam" Ann Landers/Dear Abbey thing is kind of relevant, as preachy as it is. Although having been there, she's got it all wrong. :P (Actually been there metaphorically and literally.)