Thursday, February 01, 2007

Reading and thinking

I've done some interesting reading this week, and it's gotten me thinking.

I've been thinking about this fantastic post by abfh on Whose Planet Is It Anyway?. It deconstructs the "Sally-Anne" marble experiment that is often pointed to as evidence that people with autism are deficient in "theory of mind" skills, or the ability to adopt the perspective of another person. (I wrote about the theory quite some time ago, but have long since dismissed it as an issue for Bud: it wouldn't occur to him to be sneaky if he couldn't imagine how I might respond to his activity.) The post is brilliant and it suggests a reasonable, and much more plausible, language-based explanation for why kids with autism struggle with the "Sally-Anne" experiment.

I've also been thinking about this essay by Ellen Notbohm, which reinforces my thinking about video games and reaffirms my decision to keep them outside Bud's experience.

And I've been thinking a lot about this post about the recent autism special on The View and this post about correlation vs. causation, both from Kristina at AutismVox, which pointed me to this post from Kim Stagliano and this post from Barbara Fischkin, both from The Huffington Post. I actually wrote a long post about my thoughts on these pieces and these issues. Unfortunately, after an extraordinary amount of writing and editing and rewriting and tweaking and rephrasing, I hit the "Publish" button and got an error message telling me that Blogger was down for repair. When it came back up, my post - the one I'd labored to word just the right way - had vanished.

I'm taking it as a sign.

You can read the Huffington posts, and if you've been reading my blog for any length of time you can probably guess my reaction to them. If not, I'll just mention two philosophies that shape my thinking, my actions and, most importantly, my parenting, which might give you a general idea.

The first philosophy is this: I believe that we move in the direction of our dominant thought. Think "I hope I don't forget my keys," and "forget" becomes your dominant thought. By focusing on "forget," you increase the likelihood that you'll leave the house with your keys still on the counter. But shift your focus and think "I want to remember my keys" and you change your dominant thought to "remember," making it more likely that you'll leave the house with your keys in hand.

Think "I hate autism" (or "I fear autism" or "I am exhausted by autism" or "I resent autism") and you move, psychologically and emotionally, toward those dominant thoughts - toward hate, toward fear, toward exhaustion, toward resentment.

Think instead "I love my child" and you move toward love. You move toward your child.

It's clear to me that both Huffington bloggers are smart, insightful writers and mothers who love their children. But I fear that there's an unspoken code in the blogosphere that says that the best bloggers are the ones who make their points with acerbic humor - the ones whose writing is engaging because its tone has an undercurrent that is sarcastic, snide, and derisive. That may be fine when you're writing about George Bush or Bill Clinton: they can take it. It's entirely different when you're writing about your child.

Because you move in the direction of your dominant thought.

I'm not a naive Pollyanna. And I'm tired of reading that I don't understand "real" autism because I have a "high functioning" child. There are some challenges that I avoid discussing on my blog, not because I am trying to sugar-coat the picture I paint of life with an autistic child and not because those issues don't exist, but because my responsibility - first and foremost - is not to my readers, not to my writing, and not to autism advocacy, but to my son: my son, the full, complete, human being who, despite his young age and autism, has a right to privacy and dignity and respect.

Which brings me to my second philosophical belief, which is actually a quote from Anais Nin: "We don't see things as they are. We see them as we are."

It's all about the filters we choose. We let some things in; we leave other things out. The world - autism - our children - writing: it's boundless. We choose to frame it with artificial borders of our own making. The frames are not about the world, or autism, or our children, or writing. They are about ourselves.

So I'm thinking about my filters and frames and I'm continuing to move in the direction of my dominant thought: I'm moving toward my child. No matter what I read.

20 comments:

Teal said...

This is the essence of the metaphor of the glass being half empty or half full. I tend to be a positive person because my dominant thought(s) is usually a very happy one. I suppose this means that, in a sense, we not only decide to view the glass one way versus the other, but that also our dominant thought(s) is what fills the glass. Mom-nos, you've made many comments in your posts about how much you dislike people thinking that Bud is somehow broken or in need of fixing or however you want to put it. The reason, I think, that you don't identify with the points of view of those people (and rightly so!) is quite simply that Bud already is the perfect "Bud." He might not be the perfect Johnny Jones or Sammy Smith or Mrs. Disappointed's son, but he truly is the perfect Bud.

I applaud you, Mom-nos, for knowing what the dominant thought regarding Bud is and should be. I hope this makes sense!

Mom to JBG said...

I read the Huffington bloggers' posts, and my impression is that on some level they believe their anger at autism is helpful to their children. I can understand having a lot of anger post-diagnosis, and also bubbling up occasionally over time, but not as a fundamental attitude about parenting.

Life is so short, and childhood even moreso. I think of myself as a bit of a pessimist, but even I am completely enthralled by my kids (to the point of being annoying to others I'm sure)

Reading the posts which emphasize toileting accidents and the like, I hope that those bloggers are leaving out the wonderful moments (in the interest of telling people how tough things are) in a strangely parallel way to how you leave out some of Bud's more difficult times.

I'd rather think that than believe that they aren't noticing the wonderful moments, which I'm sure are there.

Joker The Lurcher said...

this is brilliant! i am rushing to get ready for work so i will read it again properly later and follow your links too. but the main point is right on the nail.

i so hate people going on like autism makes my son "wrong". I have made him t shirts which say things like "different is cool" to make this point to other people too. although we have challenges he is proud to be autistic and is growing up a really positive person one the whole.

i am always saying to people that if they invented a cure for it we wouldn't in a million years go near it - he is just perfect as he is. and we have learnt so much about life and people through being privileged to parent such a special child. having to deconstruct social interactions in order to explain them to my son has had a profound effect on my view of people.

sorry for such a long post!

WarriorMom said...

I agree with the two philosophies. However, I may be guilty of complaining about my son at the expense of his privacy. I will start thinking about that. Thank you for writing a thought-provoking post.

Erin said...

My son with PDD-NOS is almost 4 now, and I've been thinking a lot about what I choose to write about. I don't know if I can continue to blog about him, or if I can continue to blog if I can't write about him...
I completely agree with you on the dominant thought being getting closer to your child. I recently wrote a post about how hard it has been to be close to my child, and I'm considering deleting it.

kristina said...

It seems to me you are not only moving towards your boy but with him.

And how lovely, and loving, the dance, and the original music, pictures, stories and more provided by a certain Bud.

MOM-NOS said...

Erin, is this the post you're referring to?

I think it's an honest, heartfelt description of a very real struggle. I think it's full of love, and I think it's beautiful. I hope you don't delete it.

KAL said...

I agree wholeheartedly with this, mom-nos. There is tremendous power and energy in our thoughts and how we choose to direct them. But I've been really angry at autism lately, and do hope that I'm able to separate that from the intense love and joy I have for both my boys.

I recognize that when I get a full night's sleep or am able to go for a quick walk alone, that autism is framed in a light I can handle. So one of my constant battles is trying to attain the balance that makes this possible. I am thankful for in-laws and a husband who assist me with this daily. No one can raise a child alone, especially one (or two or three!) with ASD and be loving and positive all the time.

At least I hope not, because otherwise I'm failing miserably!

MOM-NOS said...

KAL, I don't mean to imply that I don't feel angry or hateful or exhausted or resentful sometimes. I'm human - of course I do. But I try not to let those negative emotions creep in and take over and become my focus. Even when they seem huge and overwhelming I try to search for the small rays of light, and it helps.

And I agree - finding a support network can make all the difference in the world.

Daisy said...

I thoroughly enjoy reading of Bud's progress and his successes, small and large. You are the best judge of what is suitable to share and what it not. Thank you for posting -- today and always!

mcewen said...

Thought provoking and timely for me. It's only recently that I've had the time and inclination to blog [Oct 2006.] A lot of what I write about is in the past. It's not where my children are now. I avoid the 'bad stuff' too or try and slant it differently despite being an incorrigible pessimist and cynic.
I don't know how to get the balance right but I'm learning from my blogging pals.
Best wishes

Shannon said...

Please don't ever change, MOM-NOS. In the whole autism blogosphere, yours has been the only voice that seems balanced, happy, and real. Your optimism, for lack of a better word, is familiar and comforting to me. (No, I don't mean the type of optimism that chases after snake-oil cures and thinks their kid will "wake up" from autism.) It has helped me tremendously as my daughter was being diagnosed, when my nights were spent crying over the Autism Speaks video and its ilk, envisioning a life that seemed foreign and horrible. Your voice at the other end of this blog was calming and reassuring - that life would still be beautiful and that I would continue to marvel at every bit of progress my kids (one PDD-NOS, one NT) make and every funny, quirky, remarkable thing they say and do.

Another Voice said...

This was an excellent post. Everyone who comes in contact with you will benefit from your positive outlook. I hope that hundreds of parents read this and reflect upon the positive and self determined philosophy you have outlined.

Bud has excellent taste in selecting parents. Keep on reading and thinking.

Christine said...

I really hope you will add this post to the list at the right of MOM-NOS Best -- it deserves a place there. And I love the Nin quotation. I often think how appropriate it is that the metaphor of a roadmap is used for how each of us has to find our way with autism; it has been such a journey for me. I'm not the same as I was a year ago. I saw things as I was then and I see them as I am now. And as Oliver grows and matures so will I as a mother. And thank goodness for that!

Now off to read more about Sally-Anne. ...

MOM-NOS said...

Shannon, thank you. I can't tell you how much that means to me.

Christine, I've been following your journey since the day you started blogging, and you've helped me arrive at new places, too!

Lisa/Jedi said...

I agree wholeheartedly with the dominant thought idea- it's a big part of why I try to use my imagination as much as possible to find the positives. I also worry sometimes about seeming Pollyanna-ish, but I do believe that the way we think is the way we are. I have had similar worries about the anger I've seen from some autism parents & hatred directed toward autism. Kids aren't stupid... & they also tend to blame themselves for things that they have no control over. I have also decided that any parents who are willing to "admit" to their thoughts of doing away with their children are saying a whole lot more about themselves than they are about their kids (although I don't think that most people understand this, otherwise it wouldn't be used as a fundraising ploy...).

KAL said...

MOM-NOS, I know you do and that's why I love coming to your blog for perspective when my life feels overwhelming. I'm still new at this and you really do give me hope. Thank you for that.

Tahirih said...

I agree, Mom-nos. I have been sending families to your blog because I think you are not only providing good information, you are providing a model for enjoying your son in a way that I believe should be every parent's right. I work with about 20 to 25 families where one or more of their children have a diagnosis of ASD. From this vantage point I have come to believe that there are times that are very difficult. There is a point of true exhaustion that I see parents reach. There are times of absolutely being overwhelmed, of worry that is such a mental habit that nearly every conscious brain pathway leads to this kind of anxiety. But all these things do give way to times of hope and happiness and joy and satisfaction. Happily, the joyful times do, in many families, come to predominate. I see it happen over and over with the families that when they understand what is happening with their child/children, when they have a plan for moving forward as a family, when we, the professional's who work with these children don't cause more trouble than we solve, then families seem to find their feet and take to the journey with enthusiasm. I think it is why I enjoy walking beside these families so much. I enjoyed reading this blog entry and so many others.

Ange said...

I'm adding your blog to my list of weekly reading. Your focus seems similar to mine, and I find comfort in that. Thank you for this post, especially the paragraph starting "I'm not a naive Pollyanna."

Becki said...

The single most useful thing I have read since I started reading about autism (and I have read much)was your statement that "we move in the direction of our dominant thought." I do love my boy. That is, and must be, my North Star.