Now what did I tell you?

[conuly]

I'm going to copy and paste this.

I would like to thank Katie Scarvey for her compassionate and informative articles that heighten autism awareness.

Here it comes....

My husband and I have two sons on the autism spectrum. We understand Mrs. Scarvey's comparison of children with autism and children with a cancer diagnosis.

Really? Because I sure don't.

Both are devastating diagnoses for a parent to hear.

To some people, so is the realization that their child is gay. That doesn't make such a comparison correct, or kind.

The Scarvey family has very publicly discussed their own daughter's diagnosis with cancer and are bravely battling the painful and arduous road to cancer recovery. Because of this, I do not feel that she was belittling any parent who has a child with cancer and their painful ordeal.

No, but possibly, just possibly, she was insulting an entire group of autistic people? Maybe, just maybe, she was being insensitive to those who really don't think that autism is akin to a fatal disease?

When my husband and I received the autism diagnosis of our more severely autistic son, we felt as if the child that we had prayed and dreamed of, and for, had died.

That child never existed. My parents never got a kid who wanted to play soccer. Life goes on. For most of us, anyway. Some people literally kill their children. I assume you're not one of those.

The plans that we had made for his future (college and family), now have to be redirected for his special education needs, various therapies and long term care after we have passed.

Which you do because you love him. And because he isn't dying. And because he's going to live for quite a long time.

I personally feel autism is akin to a terminal illness.

I personally feel the same way about stupidity. It is only cured by death, after all. But I don't go around telling people that. I think it's rude.

Doctors offer parents a plethora of options to help deal with some of the "many" symptoms and physical and mental manifestations of autism, but no one can offer a regimen of chemotherapy, radiation or surgery to cure our son.

Your son isn't sick. He's no more sick than the aforementioned gay kid, or all the lefties in the world.

His life will "forever" be a battle of his illness.

And all my life, I've had to accomodate to live in this world of righties. Oh, the horror. People no longer force kids to change handedness. This is supposed to be a good thing.

We and other autistic parents wonder, "Do our children know and understand how much we love and fight for them everyday?"

You're not autistic. Or, at least, you don't define yourself that way, which is what really matters.

Most parents of children with cancer do not have to ask that question.

No. They have to ask "does my child understand that he is dying" and "how do I explain to their brothers and sisters that they're gone?" Really, you got the better deal here.

Their children can "show" and "tell" them, "I love you."

So can your son, if you would take the time to listen and learn.

I hope that our son knows that we love him and will fight for him everyday for their rest of our lives. I have to believe that in some way he knows.

Because he's not just going to conveniently up and die so that you don't have to wonder anymore.

And this, ladies and gentlemen, is why I don't point out how offensive people are anymore. Actually, I never did, but that's because I'm a born cynic.

Anyway, l33tminion, want to try again? Maybe this time you can make it clearer (how, I'm not sure) that you thought the comparison was insulting to autistics, not to people with cancer (though I'm confident that it's not a fair comparision to them either).

Comments

[kibbles.livejournal.com]

You know, kids are remarkably self centered. Sometimes I wonder if my kids really know how much I love them and the sacrifices we make and what we do for them. I mean they are loved and know it, but they make it sound like they want their kid to say, hey, mom, thanks for busting your ass to get me a decent education.

Well I dont expect my kids to say it, no matter what their situation. It's just not a kid thing.

That is a woman with a martyr complex if ever I heard one.

The fear of losing a child terrifies me. If my child ever had a terminal illness, I don't know what I would do. I have tears in my eyes even thinking about it.

If my child were autistic, I don't know what I'd do, but at least they'd be alive.

I'll be honest, with K being gifted I was always worried (even before her) what would happen even if I had a 'normal' kid, or worse, one that had difficulties with school or whatever...and I do. We don't know what or to what extent, but it may be the case with my middle son (and my youngest doesnt talk much but I'm not concerned yet). And you know what? He's loving and sweet and fun and wonderful and it doesnt matter. He's my precious darling angel boy, and that's what matters. And if they tell me he has problems with anything at all, as long as he can live a long and healthy life, it's ok. I wasn't devistated with the news that he has motor skill problems, or talking, or whatever. I'm ok.

But if his doctor told me tomorrow that he had cancer I'd want to die, myself.

Ug, better end this because I'm rambling and upsetting myself.

That mother should be thankful for every moment of the day that she has her sons alive.

[conuly]

The comparisons get worse and worse. I've even read some people saying that autism is worse than cancer because kids with cancer die. *shudders*

[leora.livejournal.com]

When I was a child my mental definition of "love" was, love is the word you use with family, much like the word "like" which is the word you use with friends.

I want to be very clear on this - my parents mean a great deal to me. They definitely love me, have done a great deal for me, and were anything to happen to them, it would hurt me very much.

That said, I used to feel very guilty and worried as a child because I didn't love my parents. I had this feeling that parents took care of kids because of a bond of love, and since I didn't have one, I was worried that somehow I was cheating them. I didn't tell them that, of course. I didn't really bond with people until I was about 14. I had some close friends, but I am not sure I loved anyone until at least age 15.

I'm not autistic or aspie. I'm just weird. My point is - you don't have children because they will love you. You have children because you love them. Part of what made me accept many things and okay with things was thinking about having my own children, and I figured it out. You get no guarantees, but you have children because you are willing to give and give and hope it helps a person grow and have a good life. You take that gamble or you choose not to have kids.

I also worry about having a child of average or below intelligence, though. I admit that. I feel bad about it, but it's not so much because it'd be a "bad child" as I'm not sure I'd be a good parent for the child. I want very much to be a good parent to any child I have. And I worry I will push too hard or I'll overcompensate and not push enough. I won't know what standards to hold the child too or how best to help. But if I had a child with to me low intelligence, I would just do my best.

At this point, given my disabilities and financial problems, I'll probably consider myself lucky if I can get to a point where I can have any child before I am too old to raise one. I don't know why having children means so much to me, but it does. And if it doesn't mean that much to someone, then maybe they shouldn't have them. It's a choice, and it's definitely not right for everyone. But if you make that choice, do your best for your child and try to love the kid, even if it isn't everything you hoped for. No kid ever is. Although some kids may be good things people didn't think to hope for.

[beccak1961.livejournal.com]

I don't think children understand what we go through as parents until they are parents themselves. Perhaps it's best, too heavy or too deep for them.

[wakasplat.livejournal.com]

Maybe this time you can make it clearer (how, I'm not sure) that you thought the comparison was insulting to autistics, not to people with cancer (though I'm confident that it's not a fair comparision to them either).

My staff person survived a fairly severe form of cancer. (So severe that her gigantic tumor is now on display somewhere.) She finds it just as insulting as a cancer survivor as I do as an autistic. Just for reference. Neither of us would have ever remotely thought of comparing the two.

[conuly]

I figured as much. Well, not about your staff person (hugs to her, by the way, or cookies if she would prefer), but about cancer survivors in general.

[chem-nerd.livejournal.com]

Another one of these? Someone fetch me a clue-by-four, that I may smite...

[l33tminion]

*pulls a clue-by-four out of the bag-o'-l33t, tosses*

*sighs* Have at.

[scarletdemon.livejournal.com]

When my husband and I received the autism diagnosis of our more severely autistic son, we felt as if the child that we had prayed and dreamed of, and for, had died.

oh god, what a fucking evil bitch.

[conuly]

It's not even the worst I've read.

[beccak1961.livejournal.com]

"When my husband and I received the autism diagnosis of our more severely autistic son, we felt as if the child that we had prayed and dreamed of, and for, had died."

While it's true that child never existed, to them it did. Parents have hopes and dreams for their children, and when they find out it's not going to happen it's not unreasonable to have a mourning period, not for the child, but for the dreams. When Josh was diagnosed with ADD there was a bit of time when I all why my child blah blah. Of course one gets over it and has new dreams. I don't think admitting to not jumping with joy when one is told their child will be "different" (and yes, that includes gay, bald, or purple too...it's anything outside of the vision you had of the child) is wrong. Now, the people who are saying comparing autism to something that will possibly take your child's life, like cancer, is stupid, are right. It's breathtaking to be told your child has something, as a parent it's okay to take that day or week to deal with it, but then do deal with it. It's still your child, it's who your child is, get over yourself and on with living and parenting.

[l33tminion]

Exactly. That's not the part of the comparison I focussed on in my letter, which may well have been a mistake. If I ever write a similar letter I'll have to mention something about how the death of a dream, while tragic, is not the same as the death of a child (which, incidentally, destroys dreams as well, as dying can really effect one's plans for the future).

[beccak1961.livejournal.com]

"Anyway, l33tminion, want to try again? Maybe this time you can make it clearer (how, I'm not sure) that you thought the comparison was insulting to autistics, not to people with cancer (though I'm confident that it's not a fair comparision to them either)."

It's not fair. If my child had cancer I would be on the other end of the spectrum going, at least your child is going to live, how dare you compare the cells eating my child alive to anything else...
So either way it's a bad comparison, and it isn't needed. Since she wasn't told her child has cancer she has no idea how somone would feel in that situation. So she can't say, "It's like being told your child has cancer." It isn't, and she doesn't know what that feels like. Instead she could talk about her feelings about what she is going through without those sort of spurious comparisons.

[l33tminion]

Agreed.

[pehanoie.livejournal.com]

My gosh. I was very angered by this.

'Most parents of children with cancer do not have to ask that question. Their children can "show" and "tell" them, "I love you."'

This statement makes me worry for the welfare of that child. We had a funny week where mom thought I had autism. She told me that she was terrified...but I couldn't imagine she would wish I had cancer. She wouldn't- probably because she's had it. If something can make that woman turn into a frail version of herself- and she survived it, than how could anyone rather that happen to a kid(and they die) than they have autism? I read the arguments here- she was thinking of autism like a disease. That's so strange.

Well, I can't see the her point of view. Usually I'm pretty good at it. She still scares me quite a bit.

[kibbles.livejournal.com]

You know, kids are remarkably self centered. Sometimes I wonder if my kids really know how much I love them and the sacrifices we make and what we do for them. I mean they are loved and know it, but they make it sound like they want their kid to say, hey, mom, thanks for busting your ass to get me a decent education.

Well I dont expect my kids to say it, no matter what their situation. It's just not a kid thing.

That is a woman with a martyr complex if ever I heard one.

The fear of losing a child terrifies me. If my child ever had a terminal illness, I don't know what I would do. I have tears in my eyes even thinking about it.

If my child were autistic, I don't know what I'd do, but at least they'd be alive.

I'll be honest, with K being gifted I was always worried (even before her) what would happen even if I had a 'normal' kid, or worse, one that had difficulties with school or whatever...and I do. We don't know what or to what extent, but it may be the case with my middle son (and my youngest doesnt talk much but I'm not concerned yet). And you know what? He's loving and sweet and fun and wonderful and it doesnt matter. He's my precious darling angel boy, and that's what matters. And if they tell me he has problems with anything at all, as long as he can live a long and healthy life, it's ok. I wasn't devistated with the news that he has motor skill problems, or talking, or whatever. I'm ok.

But if his doctor told me tomorrow that he had cancer I'd want to die, myself.

Ug, better end this because I'm rambling and upsetting myself.

That mother should be thankful for every moment of the day that she has her sons alive.

[conuly]

The comparisons get worse and worse. I've even read some people saying that autism is worse than cancer because kids with cancer die. *shudders*

[leora.livejournal.com]

When I was a child my mental definition of "love" was, love is the word you use with family, much like the word "like" which is the word you use with friends.

I want to be very clear on this - my parents mean a great deal to me. They definitely love me, have done a great deal for me, and were anything to happen to them, it would hurt me very much.

That said, I used to feel very guilty and worried as a child because I didn't love my parents. I had this feeling that parents took care of kids because of a bond of love, and since I didn't have one, I was worried that somehow I was cheating them. I didn't tell them that, of course. I didn't really bond with people until I was about 14. I had some close friends, but I am not sure I loved anyone until at least age 15.

I'm not autistic or aspie. I'm just weird. My point is - you don't have children because they will love you. You have children because you love them. Part of what made me accept many things and okay with things was thinking about having my own children, and I figured it out. You get no guarantees, but you have children because you are willing to give and give and hope it helps a person grow and have a good life. You take that gamble or you choose not to have kids.

I also worry about having a child of average or below intelligence, though. I admit that. I feel bad about it, but it's not so much because it'd be a "bad child" as I'm not sure I'd be a good parent for the child. I want very much to be a good parent to any child I have. And I worry I will push too hard or I'll overcompensate and not push enough. I won't know what standards to hold the child too or how best to help. But if I had a child with to me low intelligence, I would just do my best.

At this point, given my disabilities and financial problems, I'll probably consider myself lucky if I can get to a point where I can have any child before I am too old to raise one. I don't know why having children means so much to me, but it does. And if it doesn't mean that much to someone, then maybe they shouldn't have them. It's a choice, and it's definitely not right for everyone. But if you make that choice, do your best for your child and try to love the kid, even if it isn't everything you hoped for. No kid ever is. Although some kids may be good things people didn't think to hope for.

[beccak1961.livejournal.com]

I don't think children understand what we go through as parents until they are parents themselves. Perhaps it's best, too heavy or too deep for them.

[wakasplat.livejournal.com]

Maybe this time you can make it clearer (how, I'm not sure) that you thought the comparison was insulting to autistics, not to people with cancer (though I'm confident that it's not a fair comparision to them either).

My staff person survived a fairly severe form of cancer. (So severe that her gigantic tumor is now on display somewhere.) She finds it just as insulting as a cancer survivor as I do as an autistic. Just for reference. Neither of us would have ever remotely thought of comparing the two.

[conuly]

I figured as much. Well, not about your staff person (hugs to her, by the way, or cookies if she would prefer), but about cancer survivors in general.

[chem-nerd.livejournal.com]

Another one of these? Someone fetch me a clue-by-four, that I may smite...

[l33tminion]

*pulls a clue-by-four out of the bag-o'-l33t, tosses*

*sighs* Have at.

[scarletdemon.livejournal.com]

When my husband and I received the autism diagnosis of our more severely autistic son, we felt as if the child that we had prayed and dreamed of, and for, had died.

oh god, what a fucking evil bitch.

[conuly]

It's not even the worst I've read.

[beccak1961.livejournal.com]

"When my husband and I received the autism diagnosis of our more severely autistic son, we felt as if the child that we had prayed and dreamed of, and for, had died."

While it's true that child never existed, to them it did. Parents have hopes and dreams for their children, and when they find out it's not going to happen it's not unreasonable to have a mourning period, not for the child, but for the dreams. When Josh was diagnosed with ADD there was a bit of time when I all why my child blah blah. Of course one gets over it and has new dreams. I don't think admitting to not jumping with joy when one is told their child will be "different" (and yes, that includes gay, bald, or purple too...it's anything outside of the vision you had of the child) is wrong. Now, the people who are saying comparing autism to something that will possibly take your child's life, like cancer, is stupid, are right. It's breathtaking to be told your child has something, as a parent it's okay to take that day or week to deal with it, but then do deal with it. It's still your child, it's who your child is, get over yourself and on with living and parenting.

[l33tminion]

Exactly. That's not the part of the comparison I focussed on in my letter, which may well have been a mistake. If I ever write a similar letter I'll have to mention something about how the death of a dream, while tragic, is not the same as the death of a child (which, incidentally, destroys dreams as well, as dying can really effect one's plans for the future).

[beccak1961.livejournal.com]

"Anyway, l33tminion, want to try again? Maybe this time you can make it clearer (how, I'm not sure) that you thought the comparison was insulting to autistics, not to people with cancer (though I'm confident that it's not a fair comparision to them either)."

It's not fair. If my child had cancer I would be on the other end of the spectrum going, at least your child is going to live, how dare you compare the cells eating my child alive to anything else...
So either way it's a bad comparison, and it isn't needed. Since she wasn't told her child has cancer she has no idea how somone would feel in that situation. So she can't say, "It's like being told your child has cancer." It isn't, and she doesn't know what that feels like. Instead she could talk about her feelings about what she is going through without those sort of spurious comparisons.

[l33tminion]

Agreed.

[pehanoie.livejournal.com]

My gosh. I was very angered by this.

'Most parents of children with cancer do not have to ask that question. Their children can "show" and "tell" them, "I love you."'

This statement makes me worry for the welfare of that child. We had a funny week where mom thought I had autism. She told me that she was terrified...but I couldn't imagine she would wish I had cancer. She wouldn't- probably because she's had it. If something can make that woman turn into a frail version of herself- and she survived it, than how could anyone rather that happen to a kid(and they die) than they have autism? I read the arguments here- she was thinking of autism like a disease. That's so strange.

Well, I can't see the her point of view. Usually I'm pretty good at it. She still scares me quite a bit.