Susan Senator

Here are the latest no-fail objects or things to do that always please me, or do exactly what they promise, in no particular order.

1) Gewurtzraminer wine
2) Spanx
3) NY Times Sunday Crossword
4) My Cape house
5) Joe’s at the Barley Neck in Orleans
6) Dinner with Ruth
7) Mad Men
8) Greg’s artistry with my highlights
9) My weed whacker
10) All my sons at home

I was gazing at my Nat’s face in the previous blog post and I thought, “Beautiful. You would never know that he is someone that some jerk could call “retarded.” I was thinking about Tropic Thunder, and all the latest uproar over the use of the “R” word, uproar that I have participated in. I thought now that perhaps there should be a different kind of slogan campaign to raise awareness about the nastiness of using the word “retarded” as a substitute for “stupid,” or “confusing,” or whatever, but not the way we have been merely shutting down the word itself.

Here is an example of why I don’t think the censure is all that effective. The other day I was at the beach and two young women walked by. One said, “I know! I’m so retarded!” I looked up and I said, “Don’t use that word. Please.”
She stared at me and I waited for what would come next. I was ready for a fight, actually aching for it. I could take her, I thought…
Her friend said, “I know. I’m always telling her that.”
My breathing started up again. But I wondered if the young woman had actually learned anything, other than being shamed. Was shame enough? Would she stop using the word, but still think it is a terrible thing to be retarded? And isn’t that the point we really want to get across, that there is nothing wrong with being retarded, cognitively impaired, developmentally delayed, or mentally challenged, or whatever? Just like there is nothing wrong with being autistic! But we don’t make everyone say, “neurologically challenged.”

How much more meaning this little interaction would have had if she could have gotten just a bit of all the wonder that is Nat. Now, of course, that would be impossible, because she would never get to know him in the brief time we had. And I don’t know how he would have felt about getting to know her, since she had such limited judgment as to reduce her own actions to such a narrow level.

So I got to thinking some more about the whole “retarded” thing. And I have to admit that the PC aspect of it does challenge me a little bit, because it does not really address our concerns. It does not educate the offender in a meaningful way. It merely seeks to close mouths against the word. It is authoritarian, rather than informative. It closes the subject, rather than to open a discussion and truly educate. Do we learn by being told, or by being helped to understand and then come to a more accurate conclusion? I submit it is the latter, Your Honor.

And the fact is, there is nothing wrong with the word itself, nothing wrong with being retarded. Some (actually, only one) of my best sons are retarded! Or at least, that’s how he tests on those meaningless tests psychologists use (if you ask me, it is the psychologists and others who fail to interpret Nat’s very depth of character who are —– well, you know).

It’s that the context has come to mean a put-down. What is wrong with the use of the word is that it seeks to reduce a person to one thing. And that is wrong to do, especially if it is done with nasty intent. (For example, when my husband says, ‘you’re just a big pile of sugar,’ I don’t mind it in the least. We both know that I’m more than that, but he is saying it with love and admiration. But when someone says, “Sugar buns,” as someone un-Ned called me in college, it is insulting and demeaning, as well as inaccurate.) But when you ridicule someone who can’t really think the way typically developing people can, and only see this particular ability as defining them, then that is making fun of that, dehumanizing the person.

It is not the word, that bothers me, exactly. It is the use of the word, the intent. It is even the way people say it, with the emphasis on the first syllable: “RE-tard.” Or, here in Boston, “RE-tahd.” I thought about Nat’s loveliness, and completeness as I looked at his picture and then thought: “The face of a retard,” as in the way ad campaigns put a face on a concept: “The face of hunger,” with a starving child, etc. But of course that would probably seem to some as horrible, when what I want to do is get them to think about the limited, narrow way we view people with cognitive disabilities. They are so much more than a test score.

How much power there would be in taking back the night, in owning that word rather than running from it. Why don’t we consider taking the Eleanor Roosevelt view of the thing, and declare that we cannot be offended except by our own permission?

Retarded.
It’s not what you think.

or

Retarded.
It’s much more than you think.

or

Retarded.
Think again.

What do you think?

Shanyna Punum. Only Yiddish can capture the feeling here.

Or maybe a Beach Boys song. You see, The Beach Boys were never my cup of tea. But now, they are one of my all-time favorite groups. They had the power to make Nat smile like this, when he saw them in concert Sunday night at the Melody Tent in Hyannis. Heather, his counselor took this picture.

Or maybe it was the fact that he was with Alternative Leisure, his social group organization! (They are the Special Olympics of socializing, and you know how much I adore Special Olympics.) Heather said, “He looked at me when the music started, and I said ‘Nat if you want to stand and dance you can.’ He was dancing the rest of the night! “

I often feel guilty. I have a difficult time just being happy. I allow myself to be happy on vacations, when one is supposed to be. But regular days: it’s tough to slip below that thin but sticky layer of remorse.

Nat is back at the House; Max is going on a trip with friends. Away, away, my darlings. Wistfulness descends. I find nagging thoughts poking around in my head: Should have gone with Ned to drop off Nat, didn’t kiss him goodbye. Should take Max to the station myself. Should have listened more animatedly when he described that stupid movie, Clone Wars. Should have gone with Ben to the festival, rather than letting friends take him. Should make better, healthier dinners. Should spend less time on the computer. Should straighten out boys’ drawers. Vacuum the filthy laundry room.

Shouldshouldshouldshouldshouldshouldshould

Really, what it is is I should have just been happy when I was younger. When I was a young mother. A young woman. But back then fear ate me alive. And now guilt nibbles. I guess nibbles are better than being devoured. But when will I learn to just be in the now and not only when on vacation?

Good night.

One of our goals for our vacation week was for Ned to go surfing. Et voila!

We went to White Crest Beach in Wellfleet so that Ned could have another surfing lesson.  It went swimmingly! … See my Tabblo>

Our last week at the Cape. What can I say? It was a sparkling jewel.
We picked up Natty on Thursday after his talent show (!) I can’t even begin to write about that…

And then we were all together!

And now, a little bit of DD. In this case, I mean “Dance Digression.”

Last night I put on my hot pink cossie I bought from a Las Vegas bellydancer named Aradia. This one fits me best of all, and is the most forgiving. I need a lot of forgiveness these days, since I’m not dieting while I’m dealing with all my Natty feelings. Not diet + crazy long exercise sessions of biking and dancing help exorcise the ugly demons of Guilt and Emptying Nest. I feel like an Amazon (dot not-at-all-calm). And then I started taking an exercise session from myfitnesshub.com and gradually regained myself younger and not being lazy.

One thing I like to do here at the Cape house is dance in the large bedroom with the door closed. There is a wide space and a hardwood floor and a big mirror, so it is perfect for practice. I use my iPod and I don’t disturb anyone. And yes, I wear a cossie for this. Call me a freak, but it really helps me visualize and brings out my best performance. If you are watching yourself dance in a mirror in a gorgeous sunset-pink and sequinned outfit, you are going to do everything you can to stay tucked and lifted so that you don’t make yourself wince.

I enjoyed a few songs I hadn’t danced to in years, but when Entrance of the Stars came on, (the silly, overblown title always reminds me of “Entry of the Gods into Valhalla”), I was lifted up by a blast of inspiration. I did a perfect choreography right then and there, start to finish. Beginning with just arms, and then hands, and then sudden basic Egyptian. It all worked out so well, I was very psyched to teach with this song. It has the perfect amount of slow and fast parts, and enough repeats so that you can come back to certain steps. I could just see the Baby Bellies working with it.

Twenty minutes of that and I was like new again.

I got all sad all over again because Nat is just so confused. He keeps saying, “See Mommy today.” Stuff like that. I dropped him off at the House and I was just crying and crying, already missing his velvety face and haystack hair.

The House people tell me that he does great, participates happily in everything they do — soccer game, semi-pro baseball game, food shopping, serving dinner; they even went to the ICA the other night, and he smiled the whole time — but still he keeps repeating the order of the days as if he is trying to make the answer change. Maybe it’s perseveration, and something I can redirect? I tried that today on the phone with him and it seemed to make him stop and think.

But how do I know for sure?

I won’t know for sure. I’m getting used to that. It is now a dull ache, rather than a flu-like sick feeling. But still, there is a very tall thin hole in my family’s heart right now. He was home Friday night so that he could go to a friend’s birthday party, and he was quiet and contemplative the whole time. It made me kind of sad, because it just doesn’t seem like Nat. And then, finally, I heard just one, “Heeyume.” I looked up, and he was smiling. Just a little dab of silly talk goes a long way.

Dear mom
how are you
im good
im having a great
Day
see you
tonight Love
Nat

Baby Delight,
You give me baby delight,
Oh, when you smile at me and cover your face
it’s baby delight.

Baby Delight
So full of baby delight,
He does what he can
He’s Mini Man
He’s Baby Delight.

–Laura and Susan Senator, to Nat, 1989

This is from Nat’s teacher today:

Nat went to Meals on Wheels today and the job coach came in and said that he did an “outstanding” job. He followed directions and stayed on task the entire time he was out. Before MOW we had music, again we rehearsed for the talent show. We went to the gross motor room when Nat came back in. He did the stationary bike, stair master, and elliptical machine. It was grilled cheese today for lunch so he made spaghetti and meat sauce instead. He seemed to enjoy that. We ran programs with him this afternoon and he made a purchase at the school store right before he went back to the House.

He just always does what he can! See you tomorrow, my Heart’s Delight.

Statistics are a weird thing, and not always helpful. My mother always said, “You have more of a chance of getting kicked to death by mules than of being in a plane crash.” But somehow, the mule-kicking death seemed preferable and less likely. I could, conceivably, roll away from the mule-hoof and survive, whereas a plane crash…?

And remember that Susan Faludi statistic that said that there was an ever-diminishing chance that a woman in her forties would get married? Do you remember that this was eventually debunked? But how easy it was for us all to believe it. And how many middle age single women felt worse about their lives for it?

Now, when interviewing autism parents for my new book, I hear again and again “that statistic” about how autism marriages dissolve with far greater frequency than non-autism marriages. When I ask for the study that showed that, no one can point me to it.

Can anyone point me to that study? Kristina Chew, a brilliant young autism mom and St. Peter’s College professor has not found it. I kind of figure that if Kristina couldn’t find it, none of us actually could.

It doesn’t help to perpetuate this kind of urban legend. Life is hard enough.

And, incidentally, as I talk to people, it is fascinating to see that probably for as many people who feel that autism wrecked their marriage there are as many who feel that autism made them stronger.

And while we’re at it,

Life is hard enough for people with developmental disabilities and their families. So maybe Hollywood can find some other target to shoot at. Oh, sure, they do a send-up of all sorts of Hollywood genres in Tropic Thunder. That’s how Max sees it. Yet, I believe there is a particular cringe factor to using the term “retard” the way this film does. Yes, the feel-good portrayal of retarded people in movies does get kind of tiresome. That’s because we want to see disabled people as the multi-dimensional humans they really are, not just as someone to make fun of — as Tropic Thunder does — or as someone to merely feel sorry for.

In case you don’t know what I mean by Keys to the Universe, either search my blog for former entries, or just deduce that I mean: no-fail items or activities, things that always always make me happy and do what they promise.

1) Alternative Leisure, the people who run Nat’s social group, where Nat learned about friendship. Not simply the ABA-Style scripted conversations, but he learned to really love hanging out with kids his age, talking or not.
2) Special Olympics, where Nat learned all about sports and being on a team.
3) Bike ride down Comm Ave in Newton: wide, sunny, garden-filled, no traffic in the Carriage Lane.
4) Uphills that feel like downhills, on your bike: Warren Street, Beacon St. right before Hammond Pond Parkway, a section of Comm Ave right after Walnut.
5) Summer fruit and yogurt, especially after being in Atkins hell.
6) No longer caring what I weigh and finding I don’t gain weight! MwaHahahahahahahahaha
7) When Mom helps me figure stuff out.
8) Happy Beastie
9) Smiley silly talk Natty
10) Max and Hannah: happy Max
11) Pink earbuds for my purple iPod shuffle
12) Sexy husband
13) Occupied children, see above
14) Movies all five of us like, such as Ace Ventura, Pet Detective. Unbelievably funny.
15) Organizing idea for my book
16) Knowing what a dinner at the White House feels like
17) Running into a great friend unexpectedly while having coffee with another great friend.
18) Catching a gorgeous scent while riding: something blooming, but where?
19) Gel seat on my bike
20) Pencil skirt from JCrew

If you are a geek, you should buy this tee shirt.

Nat is home, and it’s really, really good.

I rode my bike a lot today, some of it with my best friend.

I have a job interview on Monday, to teach at a local college.

I am going to teach three after school classes at Ben’s school this fall: Baby Bellies, Big Beautiful Bellies (moms and staff at the school) and Newspaper writing for Middle Schoolers.

I bought lots of colored paper to continue doing the PTO newsletter.

The sun is finally out.

I had a lovely chat with my neighbors.

Ben volunteered to go with me to pick up Nat.

Bought Nat running shoes just like mine. Felt I had to explain to kind salesman why I was answering all the questions and tying his shoes. I eventually said, “He’s autistic, but he’s quite a runner!” Should not have said, “but.”

I am off my diet, and loving it.

Met with a writing friend and got some focus for the new book.

Ned’s cute.

NEWSFLASH!

Overheard, at a Jewish deli in Brookline:
Ben Batchelder, to his parents: “I miss Nat. A little.” Holds up index and thumb, making a C shape.
It is not yet known where Ben’s mother’s head landed as it flew off her neck in delighted surprise.

ITEM #2:

Email from the Director of Residences at Nat’s school:

Just checking in,

I was at the House on Tuesday evening and Nat was assisting with dinner. He is doing very well at the house. He has had no difficulty around shaving, or waiting for snacks or meals. Staff and his sleep data indicate that he is sleeping throughout the evening.

I spoke with Nat on Tuesday about running and asked him if he would be interested. Nat looked at me for about 30 seconds, smiled and stated yes. I would like to start taking Nat and another student from one of the other houses who is verbal and very social running together 1 day a week to start and then slowly increase the days and the duration as they are having success. I can also use running as a platform to teach some social skills with both young men.

First I would like to get your permission for this, second I wanted to know if you could get Nat some running shoes. Usually New Balance or Asics are solid shoes that are pretty durable.

Hope all is well and I look forward to hearing from you.

YES!! Time to buy sneakers. And a new head.

Here is a blog many of you already know about, but which I have only just discovered. What great timing for me, though. Vicki has such a deft and dignified prose; a lovely way of handling the huge and also the delicate, the excruciating and the delightful moments in her life. Her precious son Evan is gone, and all I can do is read about him and try to grasp how much he shaped and colored the lives of all around him. I have felt a lot of comfort and connection from reading this blog and I just wanted to share it today.

The worst thing so far has been not knowing what he understands about this move.
And, also, knowing I could have prepared him better. I did not because I didn’t want to make him anxious. Unsaid: I didn’t want to have another six months of his aggressive behavior like last year when he first found out he was going to camp. You tell him early and he obsesses for months. Well, maybe I should have let him obsess so that he could now deal better.

The best thing so far is the freedom I have. There, I said it.
And, also, there is a glimmer of a new connection we have, I call it the Nagging Connection. By this I mean where I nag him to get help. He told me the other day he was watching TV. His voice broke. He was sad. I knew this meant he was just watching what was on, what others there were watching. I told him, “Nat! You can watch one of the movies you brought. But you have to tell someone.”
Immediately he told me, bless his literal heart: “Want to watch a movie.”
“No, Nat, you have to tell one of the teachers there.”
Very softly, turning in the direction of the others: “Want to watch a movie.”
“No! Nat, say it loudly. Go tell someone. Now!”

The staff in charge got on the phone and I told her that Nat did not seem happy with the television program and that he needs to be asked what he wants to do, preferably given a choice of a few things. Otherwise he’ll just default to whatever is easiest, whatever is in the room.

“Okay, thanks,” she said. “I’ll let everyone know that’s what they should do with him.”

I called back, and I heard from the staff that he was watching Mary Poppins. And I realized I felt a little bit the way I do when I bug Max to go and tell a teacher he needs a way to get Extra Credit, to improve his grade. “Max, you can ask. You can always ask.”
“Yeah, but — “
“But what?”
“I don’t know.”
“Max, you can always at least try.”
Silence.
He didn’t ask. He didn’t get an A.
At least Nat asks!

I am going to see him today, right after he has art. And, he is coming home Saturday afternoon so that he can go to social group on Sunday. That’s what he talks about on the phone. That, and what he is doing at the House. He seems more able to articulate what he is doing and what he wants to do. Maybe, in part, because I bugged him. Maybe because I bugged the staff. Maybe not. Whatever, that is a positive change. Already.

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
310-781-5062

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.

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!

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…

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.
–E.C.

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.