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]

*blinks*

Oh I bet that'd go over well to a parent of a child with cancer.

"You're lucky, your kid will die."

I think I shall pass on saying that.

[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.

[ex-chaos-by-699.livejournal.com]

Man, this comment makes me feel a lot better about certain things. I was never sure if I loved my parents when I was a kid. I'm pretty sure I don't now, but I have my reasons (and that's all I really want to say about that).

[leora.livejournal.com]

Maybe it's a message that needs to be spread:
It's okay not to love your parents. It's okay to have never loved your parents.

I certainly have known and known of enough parents that didn't deserve to be loved by their children. But even if the parents were good, nobody should feel obliged to love anyone.

[kibbles.livejournal.com]

People don't always get that, that's the thing about being a parent. Kids need to feel SAFE that their parents will still love them even if they don't love them back. They need to know parental love is unconditional.

[beccak1961.livejournal.com]

I don't love my mom. I tried too, I tried to feel that bond, but as you said, that's a story for another time. I did love my grandmother though, so I knew what I was feeling towards Mom wasn't love. But hey, I don't hate her anymore either, so that's progress...right?

[kibbles.livejournal.com]

I tried to kill myself at 9 because I got a 'needs improvement' in handwriting. I ran away from home twice because I got bad grades in Hunter HS and eventually went to the local HS. I was bored shitless and wound up with my GED (and only 2 wrong on it).

So I am so paranoid about pushing too much/not pushing enough with my daughter, keeping the balance.

With my son, I don't have that fear that he will be emotionally fucked for life, he's happy, we're making progress, and that's enough for all of us.

[leora.livejournal.com]

Yeah... my views on pushing kids have changed a lot this millenium. I pushed myself hard, was always expected to. I started staying up late to finish homework when I was 12. Graduated high school with several AP credits, good grades, good test scores. Graduated college with good grades, a double major.

I didn't sleep. I didn't sleep enough between age 12 and 21. I really think this is a contributing factor to why I am disabled now. Very severely disabled.

This is not the model I will encourage my children (if I have any) to follow.

I do want to push and encourage, but it needs to be balanced with health and enjoying life and exploring things. You need time to explore different interests, even if it means you can't do all of the academic work you could do otherwise. It's okay to only be honors at your own grade level even if with enough pushing you could be a grade level ahead. It's okay to say, I can't take this course, because I'm doing FOO, BAR, and BAZ. Basically, kids need to learn to prioritize, and I intend to teach that getting enough sleep, eating well, and getting exercise (preferably in some enjoyable form) are things that should be high priorities.

Until then, I go around trying to scare teenage overachievers whenever I encounter them regularly trying to get by on only a couple hours of sleep.

[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.