Susan's Blog

Saturday, April 17, 2010

Heffalumps and Woozles

They’re extra-ordinary so better be wary
Because they come in every shape and size

No one else is awake.  I woke up full of energy and ideas.  Time to sink my teeth into a juicy blogpost.  Not sure exactly what is there, but I have an image troubling me, of a friend, a new one, and the newness of the diagnosis.  Those raw days where you bleed at a moment’s notice, like an emotional hemophiliac.  What is it that is at the heart of this vulnerability?  I think that, along with the grief of not having what you had hoped for, is shame.  Shame is one of those lightning rod words; you can’t even say it without feeling it! Ick.

So I’ve been thinking about how shame works.  Shame is so deeply ingrained in us — that feeling of the sucker punch, of a cry in your throat that doesn’t get released.  All eyes on you, seeing the real, defective you. I don’t know the psychology of shame, but I think it purportedly comes from earliest rejection — as in early childhood not-getting-what-you-want/need and feeling worthless.  Shame is a feeling, of course, so it is not something you can just get rid of or reason away.  But, like all feelings, I’m guessing that if you think about it long enough, you’ll at least start to soften it up.

Shame is part of our autism baggage, and by “baggage” I mean the junk that hangs heavy on our child, cluttering our view of him.  Baggage is acquired, accumulated.  Because you know there was a time when you could see your child without anything getting in the way.  When Nat was first diagnosed, I would look at him, I remember looking at him standing in the playground, looking like Christopher Robin — beautiful, composed, dreamy, creamy.  I remember thinking, with the shards of my heart jabbing, slicing: “so — that [Christopher Robin thing] — is not true now?”  I wondered how the diagnosis changed the essence of Nat.  What was going to crumble away — was his beauty and darlingness really a facade?  He had autism, a monstrous thing, so a monster lurked inside.  Beware.

So then he’d do something “autistic.” Toss sand, say something weird.  And I’d look around quickly, like a squirrel.  Who noticed?  What would they think? And there, it was born, shame — that inexorable flesh-eating emotion.  I didn’t even recognize it at the time; the shame merely folded into the whole bad feeling stew that sloshed around inside of me all the time back then.  But it made me want to hide, go back to my sandy burrow away from all those eyes.

But then I’d get home and it was still there:  the feeling that something was wrong, that something bad was happening, was still there.  Nat, me.  Something broken, ugly, dark, dead.

Until, some moment later, it would be gone.  I would look at Nat and see just him again, and I would know that whatever it was, it was not him.  It was not actually the autism, either.  It was what I thought, what they thought, it was the evil maelstrom of thought swirling around Nat.  But he was still there, my little Christopher Robin.


Yep, I remember feeling shame in the early days of diagnosis. Only when in public and my son was stimming. It was my problem, not my son’s, not anyone else’s. Thank God I grew enough to get over that. Brave post, hon.

— added by Brenda on Saturday, April 17, 2010 at 7:32 am

Oh, this brought tears into my eyes, Susan. Shame is a heavy burden to carry and for many years, I carried it like a stone around my neck, dragging my view of the world to the ground and preventing me from seeing what was innately beautiful about my son.

Thank you for reminding me that the only monsters we have are the ones we made in our heads. Blessings!

— added by Kittymama on Saturday, April 17, 2010 at 7:35 am

My Dh had bigger problems than I did with the dx. For me it was shocking, but at the same time I had a place to start and it made me realize what the SLP’s and my Dr were waiting for… the “a” word, so they too could move forward.

Biggest problem I had was the lack of information. Who to call, where to go. We had speech but that was all. I got my answers b/c one person I knew, had talked to someone else a few months before and had said something about their child with ASD and…. I called, had the wrong place, was given the correct phone number and they said we’ll be there in 2 days. And they were.

— added by farmwifetwo on Saturday, April 17, 2010 at 9:45 am

I’m so thankful one of our Twitter followers linked to this post.
Your exquisite unveiling of shame will be a blessing to all who read it.
Thank you.

— added by Pam on Saturday, April 17, 2010 at 11:40 am

Brenda hit it on the head. One of my autism mommy girlfriends is constantly on her son whenever he stims, be it in public or otherwise. It’s like she’s trying so so hard to just “break” him of being autistic or something. I don’t know. It’s so hard to watch her struggle, because I have so totally been there.

The shame, I think, comes from the judgment (real and perceived) we get from the general public, our friends, our family members, wherever. Because autism isn’t a “visible” disability, people see our kids in action and immediately wonder what the hell we did (or didn’t do) as parents to make our children behave so badly/differently/whatever. No one ever sees a kid with, say, down syndrome acting differently and thinks the parents must have made some grave parenting mistake and judges them the way we autism parents are judged. It is indeed painful to witness in a mom with a newly diagnosed kiddo, as you see so much of yourself reflected back in her face.

— added by ASDmomNC on Saturday, April 17, 2010 at 4:12 pm

I had a friend who has two typically developing children say to me about another friend, “I don’t think that she can handle her son not being perfect the way you can.” My initial gut response to her was, “Her son and mine are perfect. Differences don’t make people less perfect. They make them individual.” That comment has been eating away at me since she said it. There are so many things I wanted to say to her but I didn’t bother. For one, I wouldn’t make it through another sentence without crying and two, she just wouldn’t get it. Is it our job to make people get it? It is hard enough making peace with the diagnosis myself without other’s judgement. I think I need to start spending time with the brave people writing these comments. 🙂

Thanks Susan for the blog! You couldn’t have said it better!

— added by Jake's Mom on Sunday, April 18, 2010 at 10:15 am

Jake’s mom, start your own autism mommy group. It’s an amazing sanity saver.

— added by ASDmomNC on Sunday, April 18, 2010 at 4:51 pm

Once again, I amazed that someone can feel so much like I do- you always do such a wonderful job putting the words that are stuck in my head so eloquently on paper. Thank you…

— added by Jenn on Sunday, April 18, 2010 at 6:40 pm

beautiful susan. you are an amazing a gift to this world, your honesty is gold.

— added by kathleen on Monday, April 19, 2010 at 12:30 am

The worst feeling for me is not shame, but sadness when people are unable to feel compassion for my child, or people who don’t want their perfect children near him. He’s not even aggressive. He just has a tendency to re-enact movies (and it looks like he’s talking to himself), and every once in a while tantrums like a 2-year-old although he’s already 6.

When that lack of understanding came from his kindergarten teacher (mainstream class), who was aware of his condition, it was really hard for me to keep it together. It sent me into a major depression, like I told my husband I felt like it was “us against the whole world”. I felt like sending him to the special day class and only hang out with special needs families for the rest of our lives. But after some deep thinking I felt better because I know that for each teacher from hell and every parent who is “shocked” with my son’s tantrums, there are many others who think he’s brilliant and adorable. As long as his academic skills are advanced or average for his age, I’m gonna keep him in the mainstream environment. He’s not hurting anybody, and his aides can promptly deal with him or even remove him from class if he gets disruptive.

I just bought your book and I hope to find some insight that will help me face this life as an autism mother with more courage and optimism.

— added by Leila on Tuesday, April 20, 2010 at 12:31 pm

I don’t know that’s it shame in anything that my boys do, but shame that I cannot help them navigate past all those things that make them anxious or upset or hurt.

The stim or other “autistic” behavior becomes reminder of what I’m not doing right or well enough; I can’t shake it (that shame feeling) despite the fact that I know it’s somewhat unreasonable, not all together logical and unfair to my boys and to myself.

— added by Nina on Friday, April 23, 2010 at 9:01 am

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