Susan's Blog

Wednesday, October 8, 2008

The Sign of the “N”

Out of the night,

When the full moon is bright

Comes a horseman known as Zorro.

This bold renegade

Carves a “Z” with his blade

A “Z” that stands for Zorro.

Zorro —

The fox so cunning and free

Zorro —

He makes the sign of the Z!

Out of my sight,
Is my “Baby Delight”
He’s a young man known as Natty
This tall kid so dear
Fills up hearts everywhere
The young man known as Natty

Natty —
The guy who’s stunning and sweet
Natty —
His cornbread is a treat!

(Thank you, Ali, for the gorgeous pictures!!!)

Tuesday, October 7, 2008

Heaven and Hell

Today I had another column in the Newsweek/WashPost joint website called “On Faith.” It is about how we can find Hell and Heaven in this life, right now. I wrote about how a doctor’s assessment of Nat as being “retarded,” made me think deeply about what labels mean.

Unearthing Love

I’m sitting here watching the Debate. I already know who I’m voting for, but I’m trying to encourage the boys to be interested in current events. I had to explain economics to Benj today, and I think he understood more than I did about it!

This is not a politics blog. This is a life blog. So I will let you all make up your own minds and I will hope for the best.

Want to know something really great that happened? Yesterday Benj had an assignment to draw what a 20th – 21st century archeological layer would look like; what kind of artifacts would a person from the future find and learn about our era? So Ben drew a disco ball, for the 1970’s; a game console for the 1990’s; a car; John McCain’s casket (I don’t make these things up); an iPod; and a beaker that read, “Cure for Autism.”

I did not realize that he felt that way. I did not believe, until now, that he even cared about the state of Nat’s disability. I can’t believe that I was so unseeing.

But suddenly I understood so much. I think that Ben’s anger at Nat has actually not been anger at Nat. It’s been anger about Nat. I think he has been sad and angry and disgusted with the fact that his relationship with Nat is so poor. I am NOT “blaming autism,” nor am I putting the blame on Nat, God knows.

Who do I blame? Do I blame God, for allowing a child to be so unprepared for this complicated world? Do I blame the world, for not understanding the beautiful gifts Nat has as the person he is, for seeing him only as limited? Do I blame myself, for not being able to find the approach that would raise his reading level or increase his word count?

There is no one to blame. It just is. It is unfair that Ben feels that he has nothing with Nat. I have tried to show him all the things Nat can do, but what Ben wants is to have a brother he can relate to, not a brother he has to work so hard to understand.

I feel so bad for him. But I am also so glad that he is thinking and feeling about how things could be better for him, for Nat, and people like Nat. I know that people don’t have to be rid of autism to be happy and successful, but Ben doesn’t believe that — yet.

What Ben doesn’t know is that despite his profound feelings of loss, he has already learned so much about people, about limitations, and about what love feels like. Someday he will realize that he has two wonderful brothers, each full of potential, whether that beaker gets filled or not.

Monday, October 6, 2008

Questions for Autism Parents

There are some topics I wonder/obsess about, that I am interested in including in my book. The book is aimed at autism parents, but it is not strictly about parenting. It is more about finding happiness while parenting. I have talked to tons of people, but I still want to know the following, and feel free to send me your thoughts in a private email. Always let me know if I have permission to quote you in the book, and to mention your child’s name and your state/country.

Here goes:

What do you think of the concept of the Autism Spectrum? Do you find the wide spectrum a helpful, applicable and relevant concept for your child and for your family’s needs?

Do you think that diagnoses are most of the time accurate when kids first get them? (I mean the first formal diagnosis of ASD) Did your child’s diagnosis change in one way or another since then? To what do you attribute that? (faulty diagnosis? something you did that helped? something else?)

Aside from finding a cure, if that is what you wish for, what else do you wish researchers would work on, or what is most needed to make your life easier (education approaches; bona fide mainstream medical establishment research into the alternative biomed strategies like GF-CF, omega 3, and chelation; funding for family support; generous insurance; you tell me …?)

Do you want to say anything about the earliest days, how you first knew about the oldest child’s autism? What helped you, or what was not helpful (stuff your doctor told you, something a family member did or said, etc.)?

Also, do you go out with your friends much? How do you manage it? Do you have family to help? Sitters? A respite worker? How did you find them?

How are things feeling with your spouse?

Do you all go on vacations together? How do you do that? Anything you have learned that makes it easier?

What fun things do you do with your kids?

Are you happy (you, yourself, not in terms of anything or anyone else) a) most of the time?
b) some of the time? c) almost never?

Why do you think that is the case?

Do you have a parent who would like to say something about having an autistic grandchild and what was helpful to know about that grandchild? Please have them contact me, if so.

Sunday, October 5, 2008

Choas, Cakes, Cossies, and Clarity

In the beginning, there was Chaos. A morass of ideas and hot air colliding and mixing in my brain. I guess I have had two very off years. Since the end of my book tour (beginning of 2006), I have felt kind of aimless. Sure, I’ve gotten things done, like learning bellydance, writing Dirt, some articles, essays, and of course, creating this blog (on paper and off). But I feel like I was doing those things haphazardly, in a whirlwind of activity and impulse. I think I was trying to escape painful things, some emotional and some professional.

But now — at the risk of giving myself a kinna hurra — I have been feeling a new sense of purpose and vision. Continuing with my incredible new ability to compartmentalize and focus on the one thing I really need to do at that given moment. I have been able to do my lesson plans ahead of time, my school newsletter, and lately, to write my book! Why does that always amaze me?

I am still accustomed to thinking of myself as a bubblehead, probably from years of not knowing what I was doing with myself other than raising children. I had always intended to have a Career, and that is what I always wanted, too. So I think I felt like a failure for all of the early childhood years. But in my late thirties and early forties, I have begun to have real evidence that I am not. Maybe I’m a little fizzy, or frizzy, but overall, that myth has been deconstructed. The bubble has popped. I have had some fine times mothering them. The best times where those moments when I really did what I wanted to do with the boyz, without worrying about if it was what you’re supposed to do or not. Like take them to the mall with me just to have them with me, strapped into strollers so that they couldn’t do any harm. So that I could have their company in an easy way (Max and Nat really tolerated my clothes shopping very well.) and not have to play kiddie games. Kiddie games were not my strong suit. To my deepest regret, I always felt a huge yawn growing in my throat whenever a child asked me to “Pway wif” him. Now of course my heart seizes when I think of that idiotic young me! Passing up a chance to play choo-choo (Max), or pretend something with Lego characters (Ben) or look in wonder at lined up Fischer Price dolls (Nat) ! Oh, my cute, cute, now-too-old Darlings!!!!!!!!!!!!!)

But one thing I do do well (Hah, I said ‘doo-doo!’) is those kind of warm comfortable homey things like stuff that you make. I always liked Max’s Dr. Dreadful kits, where you could mix gelatin (which would be named “guts” or “bone mix”) with water and pour it into monster molds and get monster parts to eat. We also love baking special birthday cakes. And we love making costumes! Yesterday I spent a lot of time putting the finishing touches on Ben’s Kafei costume (I kept thinking, “Kafei Canum,” wondering how to make it into a joke). Ned and Ben did the Pikachu-like mask, and it is most awesome. Max’s hooded cape (his choice is to be Simon from Gurren Lagaan, who saved the universe and then just walked away, but lived among everyone in his hooded disguise) is also all done, and I also put together Nat’s Zorro costume for his House Halloween party, which was yesterday. (Nat always wants to be Zorro, so every year his costume must be adjusted. This year I made the mask myself, while DeAnnie, a staffer at the House drew on the dashing mustache.)

Thanks to my new clarity, the book is really taking shape. I now have a decent Prologue and first chapter, as well as the fourth and fifth chapters done. I had to do the fourth and fifth for my proposal, so they’ve been kind of done for a while. But having finished the first chapter is a real milestone because it must take you through the beginning, the thesis, the first examples, and also set up the structure and content of the book. The Prologue is important in that it grabs the reader, pulls him in, and then reveals for the first time, in one poignant and brief portrait, the book’s heart.

So it’s like all I want to do is my work: making stuff with my kids, teaching my other kids, and making my book. It also feels like play.

It is as if my muse/psyche/God has finally said, “Let there be light.”

And I see that it is Good.

Friday, October 3, 2008

Twilight of the Goddess

I may have to rename this computer. Ben just suggested “Twilight Princess,” from the Legend of Zelda, a name that I like even better than Sirius White. That’s because I feel that this may be more of a female-type of machine, softer and more beautiful than I first thought. Sirius White is clever and cerebral. Well, that’s not really me, now, is it?

Come to think o’ it, this might be a great Halloween cossie for someone. Why not? I’ve already done Ben’s and Max’s and Nat’s!

Phun Wif Photoboof

me likey sirius white

Thursday, October 2, 2008

Nat’s Brave New World

It seems like every time I talk to Nat on the phone lately, he’s kind of sad. I might be reading into what he’s doing, as I am prone to do, but I feel that when he talks to me, all of his longing for home comes up. He does very well apart from this; Ali tells me that when they are outside together and the wind blows in his face, he giggles. He is also doing a lot of purchasing with her at the grocery store — extremely well — and all kinds of chores and fun around the House. Walks with K, running with B, movies, dinners out.

When he’s here he is also very on. He is aware of everyone, and very interested in what we are doing. This past Monday we went down to my parents’ house for Rosh HaShanah and we had a traditional Jewish dinner (chicken soup, chicken, matzah balls, gefilte fish, tsimmis, challah). Nat was terrific. He said prayers along with his brothers. He waited patiently for us to finish the soup and all the foods he does not eat. He was sweet and a pleasure to be with. In Temple he was riveted to the Rabbi the entire time. He was following along the service with his prayer book, and he was smiling and exhibiting absolutely zero behaviors (I’m getting ready to write about that, definitely).

So it is strange how he has been with me on the phone. He starts out strong: “Who’s this? How are you, I’m fine.” And then he answers questions I ask him about his day, and he volunteers information about things he enjoyed that day. But suddenly, by the end of our conversation, his voice gets very small and shaky. He starts repeating himself: “Friday, home. Saturday, Halloween party. Friday, home.”

I always respond, “Yes, Nat, Friday you’ll be home. Saturday you are going back to the House for the Halloween party. You’re going to be Zorro, right?”

“Right, yes.” And then, “Friday, home.” His voice gets tinier and tinier, and shaky. I start to feel that pang, that ghost of doubt rising from my belly and clouding up my eyes. Is he okay? Is he lonely? Does he get it? Is it finally sinking in, that he’s living there now, for the most part? Is he sad?

I can’t bear that. But I have to.

But I know he’s not sad, for the most part. There is so much I know, and every day that knowledge covers me like a blanket. Nat is in good hands, and his ability to talk to us, and tell us real things about his day, as well as his good-natured willingness to do things with the House people proves that.

It’s just when there’s that little voice; then my heart connects with his, and that cord is still there in spirit, my firstborn, child of my soul. My brave young man.

Sirius White

Does the crisp, clean air of fall clear the mind of foggy, humid, dazed thoughts of summer? I think so. For I have never felt so focused, so organized. I think it’s because I have a job outside the home for the first time in 19 years. Because of that, there are things that I must get done on certain days because the other days are taken up with working downtown at Suffolk. In between those kinds of house-and-kid related chores there is writing the book and of course, working out and catching up with friends. I have never had to be so regimented, and I like it.

Yesterday I found myself in Peet’s while waiting for a lunch with a friend whom I wanted to interview. I had my new laptop (which I am typing on right now), and I was aware of how organized I felt, watching the time, watching the parking meter, not wasting time with emailing or, well, blogging.

I thought to myself: I feel so grown-up, in a good way. It is all so purposeful, so serious. I realized that the crispness of the new laptop helped me feel that way: the keys are so flat and springy; the new mail program is so finely drawn; the screen has no fingerprints; the color is so uniform. The white, the white, the white, the white!

And then I had it: Serious. Serious. It’s all so serious… My mind, jumpy as it is, associated to “Serious Black,” because Ned and Ben are racing to finish the Harry Potters (ain’t Sirius a sexy devil?). I then thought: Sirius Black... Serious Black went to Serious White…

And then…


Then I was laughing and laughing. My new computer’s name is Sirius White. Sure, it makes sense: serious new life, named after a wizard of dubious background, who had to prove himself and ended up being a beautiful hero, Harry’s godfather. Sirius White replaces Precious, turns up on the scene looking like a nouveau riche, an upstart, a wanna be. But slowly, I am impressed by my new laptop’s capabilities, such as taking pictures, being very fast, and having letters on the keycaps. Perhaps there is something to this new MacBook other than apparent superficially sleek style. Perhaps Sirius White is the beginning of a beautiful friendship, a whole new phase in my life, after all. Maybe he’ll even be able to fight off the Dementors..

Here are a couple of demented Dementors.
Expecto-rate Petronus!

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