Susan's Blog

Saturday, February 28, 2009

J-Nat

This is Nat about to make his first basket, ever.
For a total of three baskets.
Six points.

The team is now two for two.

Friday, February 27, 2009

11 Millions, And You’re the Thoid

And yet another…!

OH MY GOD, I THOUGHT OF TWO MORE GREAT THINGS, SEE BELOW.

I feel so good, about many many things today. Here is my list, in order of how I remembered them:
1) This weekend, Nat will play in the Massachusetts State Games in the Basketball finals!!
2) He is going to stay overnight with his teammates in a hotel in Worcester. Not with us!!!
3) I love Nat’s psychopharmacologist! He is terrific. He completely gets Nat and appreciates him. He writes things like (paraphrasing), “Nat came in on his own without his mother, wearing a beautiful green sweatshirt. His blond hair is cut long, with the locks curling over his eyes. He is fascinated with words and loves repeating them in different ways. He has no trouble making eye contact, and really makes an effort to understand what is said to him and to respond.” He gets technical at some point in every write-up, but what I love is the real effort he makes to have a relationship with Nat, asking him questions directly and only looking to me when a liaison is needed. He and I chat about the latest in medication and autism, and I feel that he keeps me well informed, and monitors every aspect of Nat’s health accordingly.
4) I got a great haircut.
5) So I plan to get Ned to take me out to dinner tonight.
6) I had to give a student an F for plagiarism, but then I checked with my supervisor, who said I could just talk to her about it and didn’t have to actually give her an F but I could have her redo the paper. I am glad, because I felt so bad that she cheated! But it was clear; I typed the sentences into google and they came right up. So hopefully she will learn from it and do better.
7) I have lost weight without Atkins! Ever since my California trip, where I modeled my parents’ way of eating.
8) Do I need any more than this? Life is good.
9) But yes, there is even more! Benj walked home by himself today for the first time!! He crossed High Street at the stop signs! And he called me when he got home, the funniest little voice mail I have ever gotten: “Mom, it is 2:47. I’m home. You can call me or just come home.” In his strong voice. Doesn’t look so funny in print, but trust me, I laughed pretty hard. Little B is growing up!!!
10) Max’s friends are all here to play Dungeons and Dragons. I LOVE having a house full of happy kids. And one of Max’s friends, Hannah (not The Hannah) was looking at a dress online and was talking about it. I said, “Oh my God, someone is talking about dresses in my home and it is not me!” She invited me over to look at it. Happy, happy girlie me.
11) I am totally in love with Neddy. (This is actually the third new thing to be added, because I am just bursting with happy things, which reminds me of when my grandma once said, looking at Max and Ben, “Two millions! And you’re the thoid!”)

12) Another one: I went to see Natty today at school, because I missed him so much, having been in California last weekend. I took him out to Dunkin Donuts. He ordered completely on his own, while I hung back against the wall. He also paid and waited for change.

It would have all been completely swell had there not been one little hitch: the counter clerk said, “there are no blueberry muffins,” when there were actually “reduced fat blueberry muffins.” Nat was confused, and stood there pointing at them, not knowing how to adjust his request. That was when I stepped forward and helped. I told him that it was the same, but healthier. He repeated, “the same,” so I knew he was anxious about it. But one bite, and he was fine (one bite of the muffin, that is).

Max-imum Potential

Yesterday Max came home with his high school course catalog to tell me what courses he would like for first semester of next year, his senior year. Senior year!! I listened and expected to nod and then go back to what I was doing (grading papers, of course) but his list of choices sent up the unaccustomed red flag. Max wanted to take “Film and Fiction,” as well as “Meaning of Life,” “3D Animation,” and possibly no AP math or AP English. He was thinking about an AP Computer course and of course he was going to continue AP French. But that was it for the AP!

I proceeded diplomatically. I was not used to directing Max this way; he really so often chooses well in most things. He has the innate good sense of his father. And so I was worried about what to do because I knew he would not like what I had to say. He’s almost 17, after all.

“Max, I’m concerned that you have so many courses that are — well — just kind of fun,” I began, referring mostly to the Film and to the philosophy course. I was willing to let him take the Animation, because he has been with that teacher for his entire high school career, and he loves animation and graphics, always has. I would love him to take those other classes but it seems to me that colleges would be looking for the students who really stretch themselves. And Max is fully capable of taking those classes, too. Moreover, he could take the film and the philosophy in college, once he has been accepted. This is what I told him.

He looked at me, not pleased. “Well, those are the ones I really want. All the AP ones are a lot less interesting. Besides, I don’t want to do things just to get into a college.”

I am so proud of his integrity. I told him that. But I also told him that in this case, I felt that it was not just about integrity. “It’s about planning so that you can get the things that you need, the things that are important to you for your future, ” I said. “And not closing doors too soon.” I have essentially told Nat — or his team — the very same thing. I hate closed doors. They are often stuck for good, and then you can’t get out. You leave it open, and you never know when you will use that opening. (Excuse the extended metaphor but I am in a rush to get to the gym and then to visit Nat at his school! I missed him last week while I was in California and my heart is just sore for him.)

“You really can take the film course at college; that’s what I did,” I continued. “Frankly, even then it was not very highly thought of — it was called ‘Monday Night at the Movies.'”

Max frowned, but didn’t dispute this. He then found that philosophy, on the other hand was being offered also as a AP History course, with classics such as Kant, Sartre, and Plato. What could be bad about that?

He also figured out how to do his 3D animation as well as the AP Computer class, which he had been leery of because he has not yet had C++ or Java. But I told him that there was no one at Brookline High who was more capable of figuring out the AP Computer class than he was. I knew from when I was on the School Committee, that at BHS the school policy was that any kid can take any class if he thinks he can handle it. No one is turned away from AP, etc. I told him that Ned could help him figure out C++ and Java this summer. “You’re the kid who takes apart computers and puts them back together so that they work! You’re the kid who created a server in our attic. You built a computer for your little brother. You design whole new lands for Uru (the online version of Myst.)!” I wasn’t going to take “no” for an answer. I did not want to see him thinking he could not handle something.

He eventually came up his list of courses, this time mostly AP and Honors. I don’t like pushing Max, but sometimes you have to. I don’t want to see him cut himself off when really the sky is the limit.

Thursday, February 26, 2009

Vax Populi

Here is a commentary I tried to get to NPR, WBUR, and several other of my favorite media outlets. It was not accepted, so I am posting it here because I like it. I am all about bridging the divide among parents in the autism community, which does so much harm to an already challenging life.
–Susan

I don’t believe that vaccines caused my son’s autism. Actually it is the furthest thing from my mind these days. Maybe there was a time when Nat was little – he’s now 19 – when I was wringing my hands about how this happened, and why. And wondering what I could have done about it. But that was a long time ago.

I don’t know exactly what causes autism. But I do know something about what helps autistic people, my son in particular. I learned, for instance, that Nat uses giddy laughter to let me know that he wants to connect with me. I didn’t know that until he was thirteen. I also learned that Nat may talk a bit like a little boy, but that he understands everything that is said to him – and around him. I have learned that Nat can do just about anything he is taught, from working at Papa Gino’s to using the telephone, but that it takes a special kind of educational approach for him to succeed.

With autism’s challenges, it is easy to understand why many parents are driven to blame their hardships on something. I don’t judge them for their vehemence because I understand the innate desire in parents to fight for their children. I have fought in so many ways for Nat: for just the right school program; for the chance to play like other kids; for adult services so that he can work and live semi-independently. But most of all, I have fought to understand him and to have a relationship with him. And that takes learning the best communication approaches and a lot of patience and compassion.

I fear that all this focus on the evils and causes of autism is actually going to harm autistic people in the long run. Currently all we can see is autism, the “thief that steals children,” when what we need is support services and accommodation for autistics. Autism is not the monster that ruins people’s lives; rather, the monster is a society that focuses on lawsuits and anger, and ignores the needs of autistic people and their families.

Start Anywhere

The wise man knows he doesn’t know everything, and admits it. The fool won’t admit he doesn’t know.
–Socrates

Anywhere you start, they don’t know it.
This was something Ned’s mother said years ago, when Nat was a baby, and we were all marveling at just how much you have to teach children. It was funny and poetic and poignant all at once, and Ned and I use the phrase as an in joke ever since. Just about any time there is something endearing that a child asks, and that we cannot believe he doesn’t know — when this lack of experience just blows our mind — that is when we quote Eleanor. I don’t mention Eleanor all that much in my writing but that doesn’t mean anything. We had a terrible, rocky start to our relationship but in 25 + years these things tend to smoothe out.

Anyway, it is kind of amazing what you do have to teach kids. I remember when Nat was a very little guy, we just could not teach him how to hold up his bottle. The only way he could drink it without help was on his back. Funny thing is, back then Eleanor had remarked, “The upper body is not quite what it should be,” kind of a whispered comment to herself, when she was doing pullups with him, tugging gently on his hands. I was so annoyed at the time, because I felt like she was being critical of Nat (and therefore, of me!), but now, of course, I do see that she was noticing something and telling us, because how could she not? And then, for years, we were told by professionals that Nat had low-tone in his upper body.

Again anyway. That is troubled water under the bridge. Yesterday it occurred to me that all little kids display that Nat-kind of innocence (another thing I wish I had understood as a young mother: it isn’t all about autism, and it isn’t all about me!). The Baby Bellies were all trying to zill. A few of them told me how the music teacher had zills but she “plays them differently.” I asked how, and they showed me that the music teacher just kind of holds the zills, suspended downward like mushroom caps, and taps them together. What a strangely antiseptic use of finger cymbals. I asked them if they would show her what they know, but they said she did not want to know. A huge teaching opportunity missed, but never mind. Many do not know what they don’t know.

I showed them how to put them on, the upper knuckle of the middle finger and thumb, concave towards each other. “What is the middle finger?” one of them asked me as I tugged carefully at the tight rubber band on her little french fry-like fingers (low tone? or just little squooshy?) I laughed quietly, storing a bigger laugh for later with Ned, thinking, “Wherever you start, they don’t know it.”

But Ned pointed out to me that actually this is a hard question, because if you hold your fingers together, there are only four of them (and a thumb, which doesn’t count, off to the side and such). How do you find the middle of four?

I think about yesterday’s BB class, and the one the day before (I now teach two; I separated the Kindergarteners into their own class, thank God), and how much fun it was. I was jet-lagged on Tuesday, having landed (from LA) at 6 in the morning, and I had taught my English class anyway. The Baby Bellies were the last thing I had to do before finally napping hard. Earlier that afternoon, I was dreading the BB class because I was so tired. Oh my goodness, (which is another one of Ned’s and my comments derived from parenting babies who don’t know so much!) But OMG. for me, to be dreading the BB. It was probably the most fun I have yet had with them. All we did was play. I just asked, “Okay, what should we play with? Veils or zills?” and they took what they wanted. Some of them want to learn actual moves, some of them want to run with the veils fluttering behind them. I just kind of fall into the whole thing, like a giant mosh pit, and they catch me and run away with me.

It’s like I have to learn it every time, that it is all good. It is totally okay with them, whatever we do, as long as it is with colorful veils. It will end up fun. I forget that. Everywhere you start, I don’t know it. My Baby Bellies help make me wiser.

Tuesday, February 24, 2009

Trip to Cali


Tabblo: Trip To Cali

Monday, February 23, 2009

Un-Funny Girl

I am on the plane now, with 5 hours to go. I don’t feel up to this. I do have a row to myself, at least, and so I guess I’ll sleep. I am sad to leave L.A.; I had a really great time. I feel like I want to live out here where it is warm and friendly. Boston is neither. But Boston has become my home for the last 20 years.

With Nat almost into adulthood (post-22) we are no longer as chained to our town. I think about how moving always seemed like it would be a total nightmare, because town by town special education is different. But post-22, it sucks everywhere, so you might just decide to live in L.A. and find housing for your darling there. There is the little B to think of. Pretty sure Max is going off to college year after next so he is less rooted to where we are.

B will never want to move. I don’t blame him.

He is so cute, I miss him terribly and his pencil-smelling hair.

I did a ton of work on my book, thanks to Mom’s feedback. Now I think this is really the title, at least for today:

Autism Mom: How to Take Care of Yourself, Your Kids, Find Your Sanity, and Not Lose Your Way

A little toothsome, but the book is more about not losing your way than it is about “fun.” I could never do a book just about how do you have fun. I have whole years where I’m not having fun! I try not to be a hypocrite.

But stay tuned; you never know what the marketing department is going to think. They might slap “fun” on the title, but you, my dear community, will know the truth.

By the way, I don’t have the answer, but I do have a lot of other parents’ wisdom to share.

Super-Californialistic Expialodocious

All week I’ve come up with great blog post titles, but nothing to go with them. I’ve been on a vacation by myself; I’m in California visiting my parents. Nothing momentous has occurred, mentally; I’ve been relaxing and just be-ing.

I like it out here in Santa Barbara. Everyone seems so happy. I went to a Farmer’s Market the other day and it was like a big festival. There were musicians everywhere, lots of color and interesting characters; lots of gorgeous healthy long-haired men; food to sample, beautiful dogs. Sun and clouds and nothing to do but walk around, eat and talk.

My mom and I explored beaches bordered with flowers of every color, and strange Seuss-like plants. Spanish missions that rose out of the yellow and green landscape like something out of Hitchcock’s Vertigo. I went on a long bike ride along the ocean with my father, breathing in the familiar bleachy smell of the ocean as I pumped my way up a mesa, and looking at the moored boats’ spiky white masts and colorful hulls as we sailed back down. The harbor looked like a boy’s collection of toy boats, all so shiny and perfect.

We went to wine country today. Ate in the restaurant where they apparently filmed the movie Sideways. When the waiter came over, I asked him with a straight face if they had any wine. His eyes widened and he held up the tome-like winelist and I said, “I know, I’m just kidding.”

Did the wine-tasting thing, which I was calling “The Emperor’s New Drink.” I did buy a tiny coonskin cap for Ben (private joke). We got some beautiful pics which I will Tabblo after Ned Darling sucks the pictures out of my camera and spits them into my computer.

I’m tired. I never really adjusted to being 3 hours behind. It feels like I get much more of a day somehow. Like when it’s 9 a.m. it’s really 6 a.m., so I feel like I have this pocket of three hours to do anything with. My computer right now says 12:37 a.m. but it’s only 9:37. Yet I’m in bed. It was also the first time I ever watched the entire Oscars because they began at 5 and ended at 9.

I showed my mother the beginning of my book. She is the first to read it. She gave me some good feedback, including that it is not really about “fun” at all, but more about finding perspective and happiness in the context of autism. She was shy to critique it — in the past I have not taken criticism very well — but I really was glad to get her feedback this time. I did a lot of writing while I was here.

I go back to LA tomorrow; I spent the first day there as well, with Ned’s and my best college friend, (he had even been in our wedding party) who took me to Disney and then to some bars in West Hollywood. That day I stayed up for 28 hours. I had no idea just how lovely Disneyland is – poppies and delphiniums and cherry trees everywhere, as well as brightly painted rides and clean streets. It was a lot more authentic than Disneyworld, it seemed. Not as big and overwhelming. John and I went on 9 rides altogether: Alice in Wonderland; twice on the bee ride; the Maliboomer; the Haunted Mansion; Soarin’ Over California; Star Tours; the Matterhorn; and Pirates of the Caribbean. Also met Mary Poppins and she let me pose with her umbrella. Perfect.

What I loved best in Disney was the big theater where you just go in and sit down and watch shots from classic Disney films and hear the swelling soundtracks. There I thought alot about Nat, and how I wish he could see it. I almost cried at some points, feeling a connection to him that reaches so far back; missing him.

I also knew that Max and Ben would have absolutely loved Star Tours; Ben has never been to either Disneys, and claims he does not want to go. No one wanted to go with me on this trip, so I made it my own. Well, Nat would have wanted to go but that would have been too hard. And that makes me sad, but it’s true.

I feel like I could live here, but I always feel that way when I travel. I am also really looking forward to being home and smelling my boys’ hair.

Wednesday, February 18, 2009

Marx Beledi

Sorry, must switch channels. I need a sequin fix. I woke up obsessed with raqs beledi again. Thank God!
Here is my favorite these days:
[youtube=http://www.youtube.com/watch?v=_5Mon_lpfYU]

It’s weird; it keeps changing on me. There are so many days lately where I look at my two garment boxes filled with cossies and I think, “I guess I should sell these.” Because I have not really been wearing them much for dancing, and I haven’t even been dancing much. For one thing, it’s so cold in my living room! For another, all the cossies need repair and so in order to wear them I have to get Ned to safety pin them onto me. You can imagine how he likes that: “Ow!” “Hold still!” I got to get out my sewing kit: maybe today; we have no vacation plans for the day (it’s the kids’ vacation).

For another thing, I feel discouraged with my belly. I dance with two mirrors propped up: one long one facing me and a shorter one for side views. I do this to check form, but I can’t help but think, “jeez,” sometimes.

I wish and wish that things were different in the media. Everywhere you look is plastic and stretched. There is so little space for a past-40 or 50 to stand. (and guess what? I’m going to be in L.A. on Thursday and Friday! D’oh!)

I realized the other day that I was actually feeling ashamed of my changing face. I was glad to realize this because I stopped right away. But I see how easy it is to buy into the thin/young paradigm.

Ned is so thoroughly sick of hearing me run myself down that he’s halfway ready to divorce me.

On my bellydance website so many of the dancers are thin young things; every part is smooth and flawless. I feel jealous on so many levels: mostly, how did they know at such a young age that this is what they wanted to do? How did they have the confidence at 20 that I only now have at 46? Why didn’t I learn and perform when I was younger? I can’t do it now, I just feel like I can’t. But I also feel like I could. I do routines now for entire songs, song after song, that look really really good. Especially when I just forget this self-hate and I just hear the music and pretend I’m surrounded by happy people. Then, I smile, clap my hands over my head, and I know just what to do, move-by-move. It rarely happens when Ned is filming me. There is too much to be self-conscious about at those times and you cannot be self-conscious and perform well.

That is why I love bellydance so much. I have always been pathologically self-conscious. In a debilitating way. And so bellydance is actually teaching me how to drop it. By making myself so vulnerable, I am forced to be strong.

So it was good today, to wake up and think about dancing and to feel myself making some of the good old isolations and moves, even in my pajamas. I feel a little like Groucho: Today I saw a bellydancer, in my pajamas! What she was doing in my pajamas, I’ll never know!

Tuesday, February 17, 2009

There’s More Than One Answer To These Questions

Here are questions I have, without many answers. Or, if I have the answers, I don’t feel ready to say them yet. When I was in grad school, I learned that just by asking a question, you reveal something about yourself. A question can be a statement.

I do not mean these questions to be statements, or objective in any way. They are just things I wonder about and have come across in all the interviews I have just finished doing for my book.

Do you think that the autism spectrum is too large? Do you feel that there are too many people being said to have autism? How do you feel about the terms “high functioning” and “low functioning?” If we hate the terms, do we also secretly hope that our kids are “HF?” Do many people refer to their kids as “LF?” Why would they?

Answers: Autism Spectrum: Some feel the spectrum is too large. Some people do not understand the many manifestations of autism. Some people would like to see different names, like maybe there is a gut disorder that has some autistic-like symptoms but when certain dietary changes are made, the gut issues go away along with the symptoms, but then these folks feel their child was “cured.”

Using LF: They would not rather use it. But if a parent is told their kid is “high functioning,” most likely they’ll use that designation, because there is a positive connotation. So if your child is LF, you are forced to come up with a different way of viewing him. That is a good thing, because LF is neurelitist. If you don’t know what these terms are, see me after class.

Have you ever thought about how all the terms used to describe autism spectrum set up a caste system ranging from lowest-functioning, “in their own world,” “severe,” to “high functioning,” “practically normal,” and stuff like that? How can a parent or a kid possibly feel good knowing that they are at the “bottom?” [not rhetorically asked]

Answer: They must come up with a new paradigm that describes themselves, and not listen to the pejorative labels.

How do you feel about the many people who are newly pregnant, who say to you: “I hope there is nothing wrong with my baby?” or “I hope he doesn’t have Down Syndrome.” I said it myself. But what that does is to set us up for an agonizing sense of failure and misery if we do get a child like that.

Answer: I felt shitty when people said to me that they essentially hoped their child was not like mine. Like I was supposed to understand and remain somewhere down here, alone with my misery. But we’re talking about my darling Nat, who has brought so much to this world. Nat Nat Nat!!!

Do you think it’s possible that there are more autistic people, i.e., the Spectrum actually IS bigger, because of evolution? Is there an evolutionary purpose, perhaps, to autism? [This topic, and the answer below, is something I came across in William Stillman’s writings.]

Answer: There may be an evolutionary change in our psyches brought about by autism. Think about how others are forced to understand difference, and take care of people in ways they never thought they would. Society will have to become more and more sensitized to difference, just as we have become more cognizant of civil rights. As more readily-communicative autistics move into mainstream society, there will be more and more access to different kinds of minds and ways of being, and — tough shit for the neurotypical, we will just have to figure out how to get along.

Is there some way that we as a society can overcome some of the negative language and attitudes? Is it possible, or is it actually the truth, that disability is undesirable? If disability is not undesirable, than should it be called something else? But isn’t that kind of PC, rather than getting at the true issue, which is seeing disability as a negative?

Answer: I don’t believe that changing the name of disability is the answer; I think that it may start with that (just like getting people to consider the harm of the word “retard”). But I do think that people, especially doctors and all others who are the first to diagnose, should be trained in how to tell the parents the truth without negative baggage.

Where do we draw our lines? Of course we don’t want our children to have issues that will give them pain or cause them to suffer. Issues that require surgery, let’s say, or shorten lifespan. Or is it more “desirable” to have a brain-typical child who doesn’t live beyond 10, than a long-lived child who struggles lifelong with developmental disability?

Answer: I don’t know.

But then we get into the nebulous areas. Is it okay to have a child whose academic capacities are “average?” Do any parents accept that, or do the blame the school system, or the I.Q. tests?

Answer: I blame the I.Q. tests for being too stupid to measure Nat’s true intelligence. I blame stupid society for seeing him as a drain, a burden, a huge cost, a mistake, a monster, brain-damaged. Who are they to judge him? Who doesn’t have something wrong with them, on the inside, on the outside? Be honest.

Let he who is without sin cast the first stone.

Saturday, February 14, 2009

Tears In Heaven

How do we even know that Sky Walker did kill his mother? I have not heard that there was evidence beyond a shadow of a doubt; maybe that’s because people are innocent until proven guilty. All I’ve heard is “autistic young man charged…”

If so, then why was Sky taken away in this monstrous restraining suit?

I feel that I need to state a few facts, “for the record.” Autism does not imply violence. Each person with autism is a different, unique individual.

Autism does not predispose people to violence. Confusion, frustration, anxiety, and profound sensory discomfort can be associated with autism, and these issues can be set off by circumstances or other people. But aggression and autism are not hand-in-hand. Aggression and human beings, however, unfortunately are intertwined. Sky might be guilty of hurting his mother. But was he aware at all of the consequences of his actions, if he even did them? Probably not. There is a death. There is not necessarily a murder.

I am not sure what else to say about this, it has gotten me all muddled and sad. I feel for Sky’s mother, and I feel for Sky.

Putting My Foot Down

“My doctor forbids me to push.”
–Sir Topham Hat

With all the stuff I’m trying to do in my daytime life — boy nurturing, loving my husband, teaching, and writing — I have been neglecting my raqs beledi. I think some of the bellylack has been due to my stupid plantar fasciitis (the Latin term for which is Heelus Hurtsus). The doc told me the other day — after giving me a huge painful shot of Don Cortizone right into the most hurted part of my foot — that I should not do anything that involves stomping down on my foot.

But also the bellylack has been due to some degree of listlessness and boredom. I have a great teacher but I still feel in a rut. I wanted her to teach me veil, zills, cane — all the props — but that is for the Intermediate class and she feels I’m still a Beginner. That frustrated me. I’ve been doing this nearly three years and I don’t feel like a Beginner.

So I have not been to class for these various reasons and my dancing has suffered. Tonight I put on my fuschia and silver cossie, the very first I had custom made, and decided to dance without stomping down my foot. All on toes, or standing in one place. Well first of all, I hated the way I looked. It felt harder than usual to stay lifted, so I think I looked kind of dropped. I had lost my progress on my hand circles, and my vertical hip circles looked stiff. Plus my damn foot hurt! Well, okay, my interior hip circles were wonderful, and so was my upper body work.

Now I really ache. My doctor was right!

Nevertheless, tomorrow afternoon I’m going back to class and try to have patience with the process — and with myself. And try not to stomp too much.

How Will I Have Any Fun Now?

I finished. First draft complete.

Resources

Now that I’m editing and rounding my book (got to had it in by May!), I am interested in putting in resources for parents. I’m looking for websites, books, articles, blogs, and products that have helped you feel happier given the context of living with autism. For this section, I am not looking for therapies or approaches you’ve taken with your children; I am not necessarily looking for autism blogs or books, although feel free to mention your faves. But mostly, I am looking for tangible resources that have helped you gain perspective, the actual websites or books, that have helped made you smile. But I don’t mean looking at Dilbert for a laugh or something like that. I mean some kind of site that gives you info and pointers for inspiration and empowerment, leading you to feel happier and more productive a person.

These sites don’t even have to have anything to do with autism, but maybe they have helped you gain perspective about your happiness and your child. Familyfun.com? Girlfriend’s Guide to Toddlers? Cosmopolitan, to make you think nasty about your partner?

Maybe you don’t get what I mean. Send something in, anyway. You never know, it could be just the thing that helps someone else get a handle on their happiness.

Send it to susan@susansenator.com or feel free to post it here! And thank you!!

Friday, February 13, 2009

All Apologies

Told you I’d have a more chewy post than the bellydancer cat one. I wrote this one for today’s Newsweek/Washington Post online On Faith column. Enjoy, ’tis a true story about my one and only Nathaniel Isaac.

Just Couldn’t Resist

I promise a more serious post is on the way, about the vaccine court case verdict, but…
(Now, please, remember, bellydance is not about seduction, it is a celebration of feminine beauty and energy. Nor are cats encouraged to try.)

Wednesday, February 11, 2009

Let Sleeping Teens Lie

So I was talking about my laissez faire thing in the previous blog post. Actually the reason I started writing about that was Max. But suddenly the Natlove came pouring out of my fingers, so I had to let it run.

But the Maxielove. Well, that is just as powerful and just as unknown a subject. Strange how so many of us think of autistics as “mysteries” but when you think about your teenagers, any teenagers, there is a lot of mystery there, too. Max just smiles at me and his eyes are the same as his baby eyes, but there is this all-knowing, all-accepting expression. There always has been. He is an old soul. Even when he was a toddler, when one of his little friends would take a toy from him, he would turn to me with that same expression, that asked, “Why do they do that?” but also, “Oh well, it’s just a toy. Don’t worry, Mommy.”

How I worried about him! Would he ever assert himself? Was he okay being like this? He was so gentle, so passive. Was he sad on the inside, repressed? Or was he just a totally different kind of being from me?

See what I mean? Mysteries, all of them.

Anyway, Max. So I noticed the other day that he and Hannah were just kind of napping on his bed. Hmm. I let it go, but I told Ned. “The two of them are sleeping!”

So then the next time she was here, it happened again. Curled up together like kittens. So I asked Max, “What’s with the sleeping so much?”

He shrugged and smiled. “I don’t know. It’s so comfortable!”

“But — are you tired? Are you getting enough sleep? You’re probably throwing off your sleep cycle! I should know! I nap every day. But I’m old!”

He just gazed at me. Those eyes.

So then I talked to him about it. “I don’t know, Maxie, I just feel — weird. It’s just — if I were to ask any of my adult friends about it, they’d all kind of be — hmmmmm. It’s hard to understand why you’re just kind of sleeping like that. I know there’s no real harm in it, I just — I don’t know.” I kept faltering like that, trying to figure out what I meant, while he just listened.

The next day he said, out of the blue, “So does it really bother you, the napping?”

I tried again to explain it.

Then he came home without Hannah yesterday. “Hey,” I said. “Did she not come over because of the napping thing, what I said?”

Max shrugged, smiled. “Kind of.”

“Ohhh!”

Still smiling, he said, “She’ll be back. You know Hannah.” Despite all of the uncertainty I was feeling, there was this well of pride I felt for this boy, who could be so gently certain of himself and of his loved ones. So sure that life was okay, nothing to worry about, just like when he was a baby.

And then a picture of Linus flashed into my head. Linus, with his blue blankie, had always reminded me of Maxie. Then I remembered: Linus used to pat birds on the head. He and the birds were so happy with it, too. Then one day, Lucy yelled at him for patting the birds. “No one pats birds on the head!” she yelled, shaming him. The last frame is of Linus looking down at the birds and all of them look so sad.

So I called Max while he was walking to school. I told him the Peanuts story. “You know,” I said. “I don’t want to be like Lucy.” He gave that dry laugh. “I mean, there’s nothing really wrong with you guys napping like that. It’s just that — like the bird-patting — it’s not something other kids really do. You know? So tell Hannah.”

“Okay.”

And she came back today.

Serious Talk

The older I get, the more I have adopted the policy of live and let live. This modus vivendi does not apply to government or institutions, of course. No, those must act a certain way that is only to the good of all or most. But for loved ones in my life, I see myself increasingly lenient in letting them be who they are.

Is this laissez-faire parenting? I don’t think so. For the simple fact that my children are (knock wood) upstanding young men and a pleasure to be around. If they were brats, then you would have a case.

What do I mean by letting them be who they are? By now my readers are familiar with my view of Nat, and his right to speak in his own language if it makes him happy and helps him express his emotions (without harming anyone). I hate the term I once gave it: Silly talk. That was neurelitist of me, I see now. Of course we all need for our children to be able to communicate as much as possible in the world, and to learn the ways of the world for obvious reasons: self-sufficiency, or survival. Children have to learn to the greatest extent possible, how to live without their parents. And so we urge Nat to speak, to write, to gesture, to express, to type; whatever will help bridge him to us.

I am working so hard these days on ending my habit of patronizing him. The other day, I had a thought that seared me through my heart: what if Nat really can understand all, not some, but all of what is said to him and around him, but that the problem is only that he absolutely cannot speak, find the words and articulate them? Nat’s teacher is convinced that he does; that his receptive language is truly intact, but that is expressive is the problem. He does everything he is asked to do. Everything he learns in school and at work and at play, he does. He seems to really want to be a part of us, when I think about it.

So if he can understand, but cannot speak in turn, how painful must that be to him? Is it? Is he frustrated? But he would show that, right? What does he go around thinking, about me, about us?

So I absolutely have to stop, stop, stop babying him. Just because his words sound innocent and babyish, it does not mean at all that he is on that level. How could I have been so foolish as to not realize that??

Well. I guess laissez-faire can also apply to me.

Tuesday, February 10, 2009

Suffering From Dimension

Separation, moving into a new phase, is the hardest thing some of us do. I think it is very hard for me. I don’t feel that I was truly separated, as an individual in my own right, from my parents until I was in my thirties. I had a lot of fear about being an adult; being responsible for myself. It is no coincidence that my separation happened for good in my thirties, when I was a mother in full swing.

I think of my thirties, the early childhood years of Nat and Max and the early adulthood years of Susan, as predominantly sad and uncertain years. I was kind of lost. I was frantic, doing so much but never really getting it. Gerbil in a wheel. I am sorry, Self, for feeling that way. But then again, why? If sad it is, than sad it was. Sad is a part of things. Who says that it should be happy?

I fault communication and inexperience for that one. We seem to be told that having children will be a happy thing, just like we are told that getting married is a happy thing. And they are happy things, but happy does not look the way we thought it would. Or should I say, “I?” I have no idea if that’s how you thought it would be.

We go into things seeing them only in two dimensions: what we’ve seen from the outside, and what we’ve heard/read. Those are the two dimensions. When we enter into the thing, the big thing like marriage or childbirth/adoption, we then experience the addition of the third dimension. We go deeper. We go through some kind of pocket of time and in-the-moment action, and then suddenly we are on the other side.

I actually felt this when I first ran for School Committee. On Election Day, I woke up very early and I thought, “By the end of this day, I will have won this election and it will be over.” This is because campaigning is very hard. 6 weeks into the election I had an uncontested race, yet because I was new to politics, I had to build a base and campaign just as actively as a contested candidate. I had to go to neighborhood associations and speak; I had to attend School Committee meetings; meet with principals; attend any school functions at the 8 K-8 elementaries and the high school. And so on. So on Election Day, I dressed up very crisp and businesslike, held Benji in my arms most of the day, and handed out my brochures. When it was over, it was over, and I was on the Inside.

So when you go through something as intense as childbirth/adoption and suddenly there is a baby where there wasn’t one before, you are just pulled inside out and a whole new consciousness surrounds you.

Then you get used to it. Then you get good at it. Then you enjoy it. And then they are ready to go. And suddenly, there you are, in two dimensions again, looking outward at their leaving you, not knowing how it will feel, only guessing by what others say/do and what you have heard/read.

You go through it. They go. So tonight, the phone rang and I was napping on the couch so Ned answered it. I heard him talking to Nat. The repeated questions. The same questions answered. The addition of new information, like what we will do this weekend. Then, the good-bye. Lying there listening, I thought, “Our son doesn’t live with us. He calls us.” I sighed, but it didn’t hurt. It was just the way things were now.

Monday, February 9, 2009

Babwa Wawa is calling…

Hi All —
I need to interview an autism parent, STAT!! What I need is for you to think about your worst episode, your saddest moment, go deep. I’m going to get all Barbara Walters on you…

And then email me with your phone number so we can talk; only do so if I can use your first name and state/(country if you are not from US) and quote you.

Do not rehearse, do not write down your response. I want this to be fresh and real, not writerly, not edited, not luminous, not heartfelt or poignant. Just Plain You, and Real. But I want to get you thinking, I want to take you back if you dare to go.

I will be back here (after the gym) and ready to talk at 1 p.m. EST. Hope to talk to one of you!!!

Thanks in advance. My readers totally rock!!

–Me

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