The BlogHer post was also written as a reaction to an Age of Autism bitter, rage-filled account of what a parent considers autism to have done to her daughter, and her own life. The parent wrote,
"[My daughter] is dead. That [girl] is dead, and I don’t care if people hate me for saying that because that’s how I feel and that’s how I will always feel and there is no closure and there is no comfort just because she can talk now."The empathetic BlogHer part of me first cheered for the daughter who can talk now, then wanted to hug the mom in so much pain. I want that mom to meet people from parenting communities like mine, so she can observe real people who have carefully maintained their and their children's dignity, even though like her they have parented through situations most people won't willingly contemplate -- including having their children with special needs actually die. That mom needs to hear from, learn from parents who believe in sanity-saving catharsis between friends, but who remain otherwised focused on loving, respecting, and helping their children. Let's cross our fingers that she soon finds the hope and compassion she so needs to change her attitude and let herself love her daughter.
The lioness-mom part of me -- the one who writes here in my personal blog -- was disgusted by the post, and also at Age of Autism for further corroding that mom's soul and undermining her emotional stability by publishing such child-abusing vitriol as "honesty." How DARE such people call themselves autism advocates, sell themselves as helping our children! Who and how exactly is that hatred supposed to help?
By publishing a post in which a parent declares their autistic child to be dead to them, Age of Autism has disrespected our children and indeed anyone with autism to the ultimate degree. They have outed themselves as the Vampires of Despair, whose only interests are bleeding the autism community to sustain themselves, and luring converts to their distasteful mindset by whatever tactics necessary. This is exactly the kind of cultivated nastiness recently decried by Orac at Respectful Insolence, who writes of such attitudes:
"It is a view of autistic children that dehumanizes them. They are portrayed as "toxic," "damaged," poisoned," and "lost," among other things, with stories of the "light going out of their eyes" after a vaccination."The Age of Autism author -- who received kudos galore from parents only too glad to spew additional negativity about the children who depend on them -- says she doesn't care if people hate her for saying that she considers her daughter to be dead. I wonder if she realizes that those haters may include her own two typical children, who will likely one day read what their mother has written about their sister; and her daughter with autism, since people with autism are often more aware of what is going on around them than their communication skills reveal. What if that not-dead girl eventually reads what her mother wrote about her? (Though I hope it never happens; I hope AoA pulls a Generation Rescue and scrubs the offending material off their site.)
Reading the My Daughter is Dead post made me wish that parenting came with a legal vow, or an Unbreakable one, based on a common marriage vow:
Do you, [parent], promise to love, respect, and protect [this child], in good times and in bad, in sickness and in health, so long as you both shall live?I consider this vow to be implicit, a reminder that as in marriage, no one can anticipate the joys or challenges parenting will bring, or guarantee perfection. The parent who wrote the Age of Autism article needs to disengage from the vampires, find a more positive community, revisit her parenting priorities, and remember that protecting one's children includes protecting them from the worst of one's self.
The irony is that in one line, she says her daughter is recovered from autism. What? How can she describe that as recovery?
ReplyDeleteIf that's a child 'recovered' from autism, then my kids are doing brilliantly well all without DAN or Jenny McCarthy ;). Why waste the money?
OMG! I just read that article. What a self-serving hate filled rant. What struck me is the self-pity and the divisiveness she is allowing between her children. Instead of teaching compassion for their sibling she is transferring her own resentment toward her daugher onto the NTs.
ReplyDeleteHowever, am not sure that what she means about Eve being dead is that she is manifeatly dead. But that the child she had hoped she would be is gone. Therapists do tell us that we need to mourn the child you thought your child was going to be. I remember the sadness about that. But instead of feeling bad for myself I felt bad for him. Instead of being resentful that other chidlren were healthy I faught to get support and help for my child and others.
Its interesting that anytime I do feel sorry for myself or my children God does have a way of putting things into perspective for me. Since I sit on the CSE in my home district I am privy to alot of trauma with children. Even riding the train into an autism conference I met a woman who had buried her daughter to cancer. I don't understand people like that author. Nor the people that gave her their kudos.
Perhaps its indivcative of American society that we all think that we are entitled in this world, and when we don't get what we want we have temper tantrums.
I think its a sad state of affairs.
powerful post. i appreciate your sense of perspectives when it comes to the subject. instead of verbalizing the 'hate' that the author of Age does, first you connect with the pathos that she expresses, but you counter that with a much more powerful and meaningful way of 'perceiv'ing an autistic person, and life, generally. you focus on community, and that's really what health is about. that author is the sick one, not the one she hates. we all have to work together in the community to increase available health information, work to change public policy and private mindsets (eg, Age of Autism) so everyone understands and enjoys healthy living. i work for icyou.com, a user-generated website for health care videos, and that's what brings me to this website. we're dedicated to bringing the community balanced health care information. check out the site for videos from everyone--patients, family members, doctors, specialists, researchers, hospitals, organizations, and more.
ReplyDeleteWow, Squid, I read your blog and then followed the link you thoughtfully provided. And I didn't get the same thing you got AT ALL. I think the phrasing the mom used when mourning her daughter's regression - the "death" of the child as she had been - may have misled you.
ReplyDeleteThe author had a kid who regressed. She got to see the direction her daughter was going, happily down the typical path... and then the terrible interruption. that baby, with the typical path and typical bright potential etc., disappeared in front of her eyes. A lot of dreams and hopes died right there. Life changed for her daughter, and her daughter changed drastically. And the author mourns her loss, and her daughter's loss. of course. autism is not a trip to Holland.
she never said she hates her daughter. clearly, like a lot of caring parents, she has done and is continuing to do everything in her power to help her daughter. i didn't find the article hate-filled at all. i did read anger (loads of it) and frustration and sadness. Therapy doesn't fix these things, frankly I think perhaps therapy helps us get in touch with these very natural responses to a tough situation. Clearly she handles these feelings in her daily life very appropriately, in my opinion - to the point where some people who know her think autism must not be such a big deal! Because she has learned, like a lot of us, like you my friend, to slog on courageously and not spend our days whining and moaning to the people around us. To sacrifice whatever needs sacrificing in the moment - money, marriage, time, a normal family life - to get her daughter the help she needs.
But it doesn't mean it still doesn't hurt. Or that she, or I, am not at times angry or sad or frustrated that this has happened to our children, our families. And at other people's ignorant and/or judgemental attitudes.
And don't get me started on the "you are so lucky" comments people seem to hand out like candy. I might not have handled her friend's comment as well as she did - just because some people have it worse than we do, doesn't mean what has happened to us is ok. 99% of the families I know are not dealing with child mortality or crippling disabilities for their children - now I consider THAT lucky. Not that one child is less severely affected than another.
I worry sometimes that, in the midst of struggling to be brave and accepting of the sometimes terrible things life throws at us, we can go too far and repress our own healthy, natural feelings - like anger, resentment, frustration - to the point where we can't bear to read about them from someone else. I know I can't read the beginning of the "my child was diagnosed with autism" books anymore because I just don't want to go back anymore to how that period felt for me. But it doesn't mean those feelings, and that experience, is somehow bad or unworthy of the person going through it.
Hope this came out as the respectful disagreement I meant it too, Squid. Never can tell with writing. It strikes me that in this case, this mom, as so many of the autism community's parents, have gone above and beyond in fulfilling the parent vow - more than anyone could have hoped, or realistically expected. As you have, my friend. As a lot of our friends have.
mb
MB we are going to have coffee when?
ReplyDeleteI don't think you and I disagree; I feel for her and her journey, as I wrote, and am in no way belittling the challenges she and her family have faced. But I heartily disagree with how, and the forum in which, she chose to express her pain, and the people who are taking advantage of her doing so.
We autism parents need to be careful what we write about our children, especially in such ultra-prominent spaces as AoA. Now that so many people have 140 character-long attention spans, what most will take away from her post is "Autism Parents Consider Their Children Dead to Them, Cannot Accept Children They Have."
Our children have enough strikes against them when it comes to public perception. We need to be on their side.
>>How DARE such people call themselves autism advocates, sell themselves as helping our children! Who and how exactly is that hatred supposed to help?
ReplyDeleteit sounds like a lot of your anger is directed at AofA for publishing the piece, in addition to at Eve's mom for writing it--which is a good point; feeling something, or even articulating it, is a different action from the one that publishes/publicizes the feelings. i empathise with the reaction, but in terms of who it's supposed to help . . .
i think it might help *her*, and other parents who find ourselves wanting to spew vitriol occasionally. we can remind ourselves that despair or overwhelming negativity aren't helpful or loving, but making the scariest feelings public is an important act--one that you've taken on in an important way, too, squid. we can ask that frightening or "inappropriate" feelings be communicated with context, with measure, and with empathy (which i think Eve's mom did a pretty good job of), but asking for them to be silenced, or even limited to private conversations between friends, seems dangerous to me. ghettoizing negative stuff makes people who feel it feel alone; publicizing it, though tricky, can make help earnestly loving parents who occasionally fall down really hard know that they're not alone and unspeakably horrible, maybe even give them the deep breath they need to keep going. that kind of self care for parents is, i think, just as important as a commitment to ameliorating public perception of autism and autistic folks.
it sounds like Eve has a genuinely loving parent bent on helping her daughter however she can, a mom who touches something frightening and awful sometimes and has decided to speak about that publicly. it's possible that strict rules about which feelings regarding autism are okay to share publicly--that is, only ones that jibe with better parenting know how, only ones that advance the cause of perception amelioration--might be as dangerous, even as unkind, as the admittedly sobering feelings Eve's mom communicates.
@anonymous: Not against venting, as anyone who's read this blog knows. And certainly an advocate of first amendment rights. But, as I wrote to MB, we need to be careful how we phrase our darkest thoughts in public; they may come back to haunt both us and our children, and not all readers will interpret them as thoughtfully as you and MB.
ReplyDelete