Susan's Blog

Monday, August 4, 2008

Hooray for Honda

I just received this email from an autism activist:

An American Honda automobile radio commercial mistakenly ran in the
Michael Savage “Savage Nation” radio program in the San Diego and New
York markets. We have taken immediate steps to ensure that all national
and regional Honda advertising be pulled from this program permanently.

Jeffrey Smith

Jeffrey A. Smith
Assistant Vice President
Corporate Affairs & Communications
American Honda Motor Co., Inc.
1919 Torrance Boulevard
Torrance, California, 90501

I am just so PISSED OFF at that asshole, Savage. He is as cruel as he is misinformed. Autistic kids are not “brats,” but he sure is. I have avoided posting about the aptly-named Michael Savage because I did not want his stations to get more attention and possibly do even more damage. I sent a letter right away to our local affiliate, WRKO, but did not hear back.

It was wrong of me not to blog about it when silence can be construed as apathy. There is no ignoring evil.

Savage and his minions really need to apologize and learn from their mistakes.

We should all thank Mr. Smith and we should all consider buying Hondas for our next cars. Tell a friend.

Time for Chapter 3

Well, it is time to get to the meat of my book. It is about halfway written, or maybe just a third, but I have 9 months and what I need now is to focus chapter-by-chapter. I need to interview people about various topics. I have already covered several topics.

The chapter I am working on currently is about philosophy of autism, in terms of the parent as a person, not in terms of how you parent. I am hoping to talk to autism parents on “both sides” of the issue of what is autism and what does that mean to you as a person. How autism has affected your life, your activities, your work, your self perception. I am going to highlight and illuminate people’s experiences from both sides, although I make no secret of the fact that I do not believe that a vaccine caused Nat’s autism. I intend to walk the line, not in the name of treatments but in terms of how parents live their lives.

I am interested in perception of a child’s disability and how they affect a parent’s own psyche (not how they affect the autistic person’s psyche. This particular book focuses on the parent, and quality of life, not on the autistic person). NOTE: a reader just pointed out to me that this would exclude parents with an ASD diagnosis. (thanks, Kenneth!) I do NOT wish to exclude anyone from commenting on this, or answering my query! It’s just that I am interested in the parent more than the child in this particular chapter, that is all I’m saying. My questions for you is: how do you view autism? Do you see it as a part of your child, a positive, a negative? Why? Can you give me a descriptive example of the impact autism has had on your life, you, as a parent and a person?

Screeds are not welcome. Honesty is.

I am also looking for professionals who have something to say about how “cure vs. acceptance” affects your dealings with autism parents. MDs, therapists, teachers.

Please email me privately; no need to comment to the post. You must be willing to let me use your words, your name, and your state or city, in the book, if you do help me.

Thanks in advance!

Roller Coaster Summer

I have a column in today’s Washington Post. You can also read it in my articles page on my website if you have sign-in-noia. Ah, the innocent days of sending Nat to social group camp…

Sunday, August 3, 2008

Let it Grow

Standing at the crossroads

trying to read the signs
to tell me which way I should go to find the answer,
and all the time I know
plant your love and let it grow.

So, yeah, this came on at the best point of my bike ride: the uphill that feels like a downhill, a.k.a. Warren Street in the “Estate Area.” It was one of those bright bursts of music I get on my bike, when suddenly the song fits the terrain perfectly. And, of course, my mood. I almost switched past it, nevertheless, because I knew it was going to make me think of Nat and rip open that same bloody laceration in my heart.

I was raised to take care of things, to deal with problems head-on, to confront honestly and directly. I don’t always succeed, but that is my goal. I am a child of people who come up with solutions, who repair and fix. No sitting around on your ass and wallowing. (See, in that way I’m a little different) So when I see a loved one in pain, I need to swoop in and do whatever I can to fix it. As a young mother, I could offer my arms, food, singing, jokes, stories. I could fight the bad guys, the bullies, the evil program directors. I could slam the door in the face of the stupid, insensitive doctor and smack down the idiot on the playground. Or at least I could fantasize about it until I felt better.

So yesterday, when I dropped Nat off, back at the House, and it seemed kind of low-affect in there, with a TV on in the middle of a sunny day, and Nat wandering around like a lost puppy, I had to fight back tears and a sense of overwhelming impotence. I drove away and thought, What can I do, what can I do? Is this okay? He seemed so down.

I had a dull pain in my chest and throat and all I could think about was getting away from this relentless sadness. What do I do, what do I do, the thought kept going.

So, as I approached Boston, I thought, but there is nothing to do. I have done everything. If I take him out, he will only have to get used to living somewhere else when he’s older, and possibly even less flexible. How much worse is it to leave home at 22 or 25, when all you’ve known is your parents’ way of doing things, and all you’ve got is a state-run home who doesn’t even know him, to transition him? If that? What are my frickin choices, anyway? He needs to learn so much, Goddammit. And they can teach it to him better than I can, and I know it, ick ick ick.

And — a new and old thought occurred to me: how much did I suffer at the very same age, as a freshman in a college that was utterly wrong for me? For I went somewhere else before I got to University of Pennsylvania, and transferred after freshman year. At Trinity College, I felt like I’d landed in Bizarro Land, the land of the thin, beautiful, blond pink and green Preppies, and I, with my peasant blouses, curly brown hair and ample — proportions. I had one friend. I gained a ton of weight. I got sick drunk several times. I went out with a horrible young man who would only date me under cover of night, so that none of his frat brothers would know. I was totally out of my element. I knew by Thanksgiving that I had made a huge mistake.

“So? Transfer,” said Mom, her best advice to me ever. And so I did. I found Penn and went there (and found Ned and other delightful friends) and never looked back.

The House is the lesser of two evils. And, let’s face it: it’s not even evil, not by a longshot. It is filled with caring, kind staff and sweet boys who are Nat’s age and into the same things as he is. It is 25 minutes away. It is part of his school, which I love love love even with its flaws and dogma. And then, there’s Nat, who, God bless him, has that compelling smile and a sparkle to him that attracts people and makes them fall in love with him.

And what would Nat be doing if he were here, rather than there, on a sunny day? TV, maybe a brief bike ride, maybe a walk. If we were up for it. But yesterday, at the House, he went to a semi-pro baseball game. His first ever. And I hear they are planning to see the Revolution play one of these days.

So the problem is, he and I are sad, just sad, about the change. We are feeling feelings that quite frankly suck. There is nothing to be done at all. Nothing to fix. No one to yell at. Just feel and live. Feel and live and feel and live and have faith, I guess, that it won’t always always feel like this.

Friday, August 1, 2008

Choreographing a Happy Moment

Natty is so down, so tired, so quiet. He is just not himself. He fell asleep at 8:30 on our livingroom couch.

I thought a little dancing would cheer us up. It only worked for one of us.

There’s No Place Like Home

But most of it was beautiful. But just the same, all I kept saying to everybody was, ‘I want to go home.’ And they sent me home…Oh, but anyway, Toto, we’re home! Home! And this is my room – and you’re all here! And I’m not gonna leave here ever, ever again because I love you all! – And oh, Auntie Em, there’s no place like home. There’s no place like home.

Natty is home. I am not going to be able to get enough hugging and kissing in because, just like his brothers, this guy needs his space! But I am used to adoring from a distance, and I will just let my eyes drink him in.

A little while ago he went upstairs, and I found him curled up on my bed. Sometimes he likes to nap there. I lay down next to him, facing his back, and asked him about his new house. His voice was small and muffled; he wanted to just sleep.

I found myself sobbing quietly, not wanting him to know, as terrible feelings of loss washed over me. I felt transported back, way back, to our first house, in Arlington, when Nat was just a baby. I remember laying down in my bed with him next to me, hoping we could just nap there. But Little Nat thought I was playing a game. Every few seconds he would raise his sweet head and look at me and laugh. All he wanted to do was to keep playing this game. It was so cute, and even though I was so tired, I just lay there and kept “playing.”

We never did learn to do that Family Bed thing. I always wanted to, but somehow, well, like I said, we all need our space in this family.

The memory of Little Nat and the sleep game danced before my eyes, almost as real as the sleeping Nat in front of me. It seems like now that he’s back, for just tonight, I am more keenly aware than ever that those days are over, those sweet days when I was a young mother and had my baby with me all the time. He now has a different home, and that is the way it is supposed to be. But that doesn’t keep me from feeling the loss: of both something I did have, and something I never quite had.

But — never mind all that. It is just so good to have him here; to have all my guys home with me. Three strapping young men, with their lives stretching out ahead of them, the hot blue sky overhead’s the limit.

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