7/29/2010

What Most Parents Should Want

"My comfort zones have widened, not getting rattled by “abnormal” as I once did.  I used to feel uncomfortable with the mentally and emotionally disabled, now I am not."  -Dr. Rob

We've all had that experience, I'm sure, of taking our child with a disability out, either to an appointment or to an event, only to have someone, the doctor or a bystander, give our child a look, pull back, or begin to talk to our child differently once the person realizes our child has a disability or an issue. My oldest hates it when a doctor, once aware of his autism, either starts to talk loudly to him (he's not hard of hearing) or over him as if he weren't there.

So, one would have thought that this post by Dr. Rob would have many in the autism community glad to see a health care professional who gets it, who sees our children for who they are, who values them as they are. One would have thought. But no. AoA can't do that, and for some reason that completely escapes me, Stagliano had to take this positive piece by the doctor and link it to the alleged murder-suicide by a mother of her 12 year old autistic son, replete with a picture of a pink handgun, I guess, all the more to match her book cover which appears below the short, twisted post. In fact, Stag's new bio is one half the length of the short article she posted, all with information on when her book will be available.

Dr. Rob's post is an important post, one that we should encourage. Angry parents need to take a minute, pull their heads out of their backsides and really read the words on the screen. I am continually dismayed at how anger and desperation can so badly pollute the dialogue and twist the meaning of others' words.

Acceptance doesn't mean not assisting, not helping, not working to improve. It means accepting the inherent value and worth in each and every individual. It means not shrinking away from those who are different, not treating them like the other, as if they are less than human.

Here is a doctor who writes about what he has learned, who shares how he has comes to see autistic individuals as worthwhile, valuable individuals to be treated and interacted with in the same respectful, accepting way you would treat a "normal" patient. It is absolutely what any parent of a child with a disability should want.

How the hell do you miss that? How?

My son attends a center for the physically and neurologically disabled. The individuals there are diverse and represent a wide swath of the potential developmental and physical disabilities that are possible. When I go to an event at the center, I watch the interaction of the staff with the clients and with outsiders, like the reporter who came to the last event, to see how the clients are treated. The staff treats my son and his friends with respect and acceptance. As I watched the local female anchor from one of the stations interact with the clients, looking them in the eyes, shaking their hands, interacting with them casually and naturally, I was deeply impressed. That doesn't happen in the wider world far too much of the time. As I listened to one of the clients speak about what the center meant to her because there at the center she was treated like she was normal, I had, as my daughter calls them, leaky eyes.

What I work for, what I believe in, what I want more than anything is for people like my children, like your children, like you, like my son's friends at the center, like my mother's patients at the supported living center, to be treated with respect and acceptance. Genuine, heartfelt acceptance. The kind of acceptance and appreciation that Dr. Rob displayed with his post.

The kind of acceptance and appreciation that the readers (and managing editor) of AoA have decided to crap all over.

20 comments:

Dr. Rob said...

Thanks for getting what I was saying (and thanks for explaining where all of the angry folks were coming from). I wrote the post not to say that autism is the "new normal," just that they are unique and often delightful kids. When the parents aren't made to feel that their child is horrible, they actually are quite proud. I certainly understand that it isn't easy having an autistic child, but I also don't think its all sackcloth and ashes.

Again, thank you VERY much.

kathleen said...

Yes..the dr. Rob piece and the AoA piece were about two totally different things. What I am finding fascinating-especially in the AoA piece, is that there is an assumption that a rational person would kill their child because they were overwhelmed by the lack of help/services for autism. There is a certain kind of arrogance in the "hold on to your hat" statement

Funny, how we never We hear this type of opinion when parents of non autistic children kill them. Then we speak about the horror of mental illness. Yet somehow if your child is autistic and you kill them-autism is to blame-not your mental state.

KWombles said...

Dr Rob,

Thank you.

It's not all sackcloth and ashes. It is more challenging, perhaps (I don't know that it is, though, as all three of mine are on the spectrum), and certainly the need for ingenuity is frequent. Yes, there's heartache, yes, there's fear. But there is also great joy.

One thing I do know is that there doesn't have to be anger. Frustration, yeah, probably, because there's so much work to be done, but the kind of vitriol that many of the parents that frequent AoA are displaying is absolutely a choice they make, and it does nothing to make the world a better place for their children or mine.

Sirenity said...

Beautiful said, Kim, Kathleen and Dr. Rob.

Unbelievable that AoA is using Dr. Robs lovely post as a diving booard into their cesspool of bitterness.

Hugs and Laughter

Dr. Rob said...

Sigh. You guys make me regain faith in people. It is a breath of fresh air, really. I do sympathize and try to help as much as possible.

You should see the look in the eyes of the father whose 19 year old autistic, who we never thought would talk much, is now going to college. Is he "normal?" No. But he's himself and I like him a lot.

Squillo said...

Yes, thanks Dr. Rob and Kim.

It's a helluva leap to make from accepting and valuing kids in all their variety to "you don't wanna help kids with disabilities," yet this is what we hear from AoA-minded folks all the time. It says a lot more about their preoccupations with "normalcy" than about actually helping kids.

I love my son because of some of his differences, in spite of others, and for a host of other non-autism related reasons as well. I accept all those things--even the ones that make both our lives more challenging--because I love him as he is, not as I wish he were.

That emphatically DOESN'T mean I don't pursue things to help him mitigate the disabling aspects of his condition, nor that I think life as or with an autistic person is all roses.

Dreaming again said...

Thank you.

christophersmom said...

AoA missed the point as usual. Dr. Rob is talking about something I felt personally - I used to be intimidated, afraid or uncomfortable around people with mental disabilities, and after getting to know my own child with a disability I have a whole new attitude on this issue.

kathleen said...

Dr. Rob-in reality..I find that most parents of autistic kids would appreciate what you wrote..there is a small group albeit very loud group who are so very angry because they believe that they were dealt a bad hand. Unfortunately-because they are so vocal-it would seem as if they were the majority. They are not.
I am so sorry that you have had to bear the brunt of this groups anger today-especially on a post that was lovely. Understand, they have just lost their Dr. (wakefield) and their cure powder OSR...you were just an easy target..

Roger Kulp said...

You write so well,I'm always glad when you branch out to disability issues as a whole.

Even before I had my autism diagnosis,which has itself since morphed into a chromosome 22 diagnosis,I had a bunch of other developmental,neurological,and personality disorder diagnoses.I always had to deal with doctors, teachers,etc,who treated me as if I were feeble-minded.It's very annoying,but you get used to it. What I hate is this phony solicitous behavior I now get from doctors once they learn I have,not one,but two genetic conditions, it's creepy,disgusting,and utterly fake.It happened most recently with the head of genetics at a local hospital,who I needed to see for more tests.It had been years since I saw him,and the last time I did,he was unbelievably mean,and hurtful,because he thought I was wasting his time.

Oh,and the girl described in Teresa Conrick's comment,on the linked page looks suspiciously like a child who has an undiagnosed chromosomal syndrome,misdiagnosed as autism.

KWombles said...

Roger,

Thank you.

I'm glad you're getting your complicated health issues worked out but sorry the reception you receive from physicians leaves something to be desired.

Eve said...

Summer and I were shocked by hounding of a physician promoting disability rights and acceptance. We, of course, felt it vital to cover the story from our Douchetopia studios. Thanks for alerting us to the breaking story.

Summer said...

I concur with my partner Eve. We came over to lend our support to the good Dr. Rob and you Ms. Wombles. Both Eve and myself have given our full attention to covering this story.Thank you for posting it. Here is a link to ours.

http://douchtopia.blogspot.com/2010/07/breaking-news-daily-paper-claims.html

Mrs. C said...

"Acceptance doesn't mean not assisting, not helping, not working to improve. It means accepting the inherent value and worth in each and every individual. It means not shrinking away from those who are different, not treating them like the other, as if they are less than human."

I LOVE IT!! It should be printed on cards with autistic art and sold; I kid you not. Just love it.

Clay said...

Kim, I first saw the Douchetopia tweet you made awhile ago, then read Dr Rob, then came here, then went to AoA to read there.

I read the first page of comments there, and it seemed to me that the reason they were so offended was that Dr Rob has a positive attitude toward those with autism, or are disabled. It just doesn't fit in with their "Woe is me! Hand-wringing, government and pharma blaming, phony autism treatment buying" viewpoints.

What with having lost Wakefield and Haley, they're acting like a cornered bobcat.

Lyn said...

And there is why I hate reading Age of Autism and anything from the Mercury Brigade.
I thought that was a good blog Dr. Rob.
I'm tired of people painting autism as some sort of miserable tragedy. It's not easy BEING HUMAN IN GENERAL. Let alone dealing with other human beings. Your blog entry was very compassionate and understanding and respectful.
I don't think the AoA Mercury Brigade gets that very well though. I wish they'd learn.

Also, what's so good about learning to lie? Arg. Why do we harp over a normal that doesn't really exist?

Science Mom said...

AoA actually had a very nice post today about a special movie viewing in which the author revealed what small joy can be had by connecting with the larger community. And the usual suspects still crapped on that.

Dr. Rob's post was lovely and a shame that so many felt the need to denigrate him and it. But these are people that aren't happy unless they're miserable and spreading their misery. It's so sad for their children.

lifewithasperger said...

I also want to thank you for this post. For a minute, I was really starting to think I was crazy. Not only did AoA completely misrepresent what Dr. Rob was saying, many of the comments really seemed to be saying that if we truly "understood" how hard it is to raise kids on the Spectrum, that we would then understand why their parents kill them. That just makes me shake my head.

Dreaming again said...

@science mom ..today, on that post, there is a comment on how polio isn't that bad (they're forgetting that those who get it bad, usually DIE ...not survive to deal with the disabilities it causes. Their proof is the 4 people they know who have led full lives with careers ..but they don't know those who, like my husband, have fought the battle for 50+ years ... on disability ...because just living is a career)

ARGH!

I'm torn between wanting to advocate for what is right and needing my heart to be protected.

Marc Rosen said...

AoA shits on everyone that isn't a paranoid vaccine-hating pro-chelation freak. They attacked me back when Staghorn decided to feature my article on their homepage (I asked them to take it down, and outright told them NOT to refer to me as an "ally" of theirs, though they refused to do either). I got attacked for, surprisingly, upholding journalistic standards and citing Autism Speaks's 2009 990 forms in an article. Honestly, these parents can't accept people citing FACTS?!