Susan's Blog

Saturday, August 30, 2008

Love is the Sound of One Hand Flapping

Maybe there is something to the zen idea of not trying, not pushing, but merely being. All yesterday and part of today I’ve been fretting about Nat and how subdued he is. I’ve been looking for clues in his school notebook, and the notes from the House, to how he’s really been. They all say, “GREAT GREAT GREAT GREAT DAY” etc. and they give me examples. But I keep looking for signs that he’s not happy. Proof that I’ve made a terrible mistake!

When will I quit all that? You must know how I drive my loved ones crazy with all my doubt. To love me is to put up with me, I guess. But anyway, I had been scrutinizing all in Nat World when suddenly, I was sick of it.

I was tired, napful, with literally a pain in my ass from too much exercise. Heating pad and motrin and what Dad calls an “Ironman” workout made me just want to close my eyes against all the crap in my head.

I started defrosting chop meat (Ned laughs at how I say that, like a shtetl immigrant, but that’s how my Mom says it and so did hers, so it is actually therefore the most accurate form of the stuff). and I poured myself a glass of Menage a Trois wine, which I would drink but never do, not that there’s anything wrong with it. Anyway, it’s just Menage a Moi right now, ’cause Mr. Ned is tending to his coals, which is not a euphemism. This is great, kind of subtly fruity wine with a dry kick at the end. A floral nose, etc.

So I’m a little bleary, as you can see. And I was pushing microwave buttons, sipping, washing hands, peeling potatoes, when I looked at Nat and he was smiling. I said, “There you are.” And he said, “Yes.” Then he said, “Eat hamburgers and noodles.” He knew damned well I had just peeled four huge Idahos. “Nat!” I said. “You know we’re having potatoes.”
“Yes,” he said, grinning. Then he said, “Eat inside.”
And I said, “Nat, it’s nice out, so we’re eating outside on the porch.”
“Yes.” More grinning.

And a little bit of blessed silly talk, the ultimate sign of Nat’s contentment. Pretty soon, maybe I’ll see the flappy puppet hand, and my heart will burst open with wine-soaked love. And I didn’t do anything at all, no contorting myself with reward charts or suggestions of appropriate leisure activities, or attempts at conversation. Nothing except hanging with my boy up to my wrists in Kosher beef with my head in a glass of wine.

FYI, The R Word

I trimmed down and polished up a recent blog post that made its way into my favorite media source, The Washington Post. Here it is, for the record. You can never get enough of this discussion, in my opinion.

Friday, August 29, 2008

McCain’s VP Pick

I don’t usually go political on y’all. But since this is my blog, warts and all… I have to ask a few questions about the Repub VP running mate.

A newborn with Down Syndrome?!

Hmmmm. Special Needs Mom. What will that mean? I am a diehard Democrat, and yet, I am — how to say it — intrigued by what this Sarah Palin is like and how she does it, how she will do it (I mean how she will run for VP with all this on her plate). How does the baby affect her? How will she handle the potential load of 2nd most powerful person in the world if that baby sorely needs her? I would ask the same question if a man who had a newborn with a profound disability were running for something, by the way.

What policies and advocacy could that bring…has there been a prominently disabled candidate or family member since FDR? This is very interesting. Even if the Republican ticket totally tanks, I wonder if/hope that disability issues, funding, and research will make it into the minds of all Americans as an important topic to consider.

Wednesday, August 27, 2008

Distance Speaks

Perspective is a gift of getting older. More and more, I understand why my dad reminds me of how he struggled with certain issues when he was my age, and how getting older grants you the ability to see beyond them, and to let go, even with a smile. It is true: I remember how, years ago, my therapist told me to picture that younger me, struggling with something or other, and asked what I would say to her now, if I could. I felt so much compassion for that more innocent self. I felt like my own mother.

When Nat calls these days, our phone conversations are very different from any other interaction we had shared before his move-out. He never says, “No talk to Mommy.” He gets right on the phone, and even though his voice trembles with some emotion, he always talks to me now and answers my questions. He provides content, which is a very new development. It is as if, by leaving, he has been propelled to another level, where he actually feels the need to communicate with me in a way I will understand. He needs, more than ever, to connect and he seems to be aware of that. He did not ask for our street the last time we talked. Instead, he told me about going running with Jack, and how he had had Chinese food for dinner. His voice was small and a little sad — or something — but he was talking to me because he wanted to.

Last night I got a call at 11 p.m. from Max, who had forgotten to call during the day. He is in Vermont with Hannah and her family. I put him on a greyhound Monday morning, reaching up to hug his hard broad shoulders and to kiss his impassive face. Even though I felt some trepidation for him, traveling four hours on his own among strangers, I also felt the excitement he must be feeling, setting out on his first journey alone, to be with his very favorite person. I remember being nineteen, and getting on the train at Stamford, to make the four-hour journey up to Boston to spend time with my amazing boyfriend Ned. The breathless moment of stepping off the train and spotting his handsome face in his ratty clothes. Knowing we had all that time just to be together, in this fantastic fun town. My head swims with the high of that moment.

Max was a little sheepish at first, knowing that he had not done what I had asked him to do. But there was something else that shaped his tone, a softness, a curl of happiness that I had never heard from him on the phone, or perhaps had not heard in a long time. What surprised and touched me even more was the content. He kept offering information, descriptions. He told me how cows were “really disgusting, because they lick their noses, and so their faces are always wet with either saliva or snot.” And laughed. He described a beautiful large house, an icy cold pond. Crazy stars.

When I got off the phone, I felt happy, full. I think it was because for the first time in a long time, Max really wanted to talk to me.

Tuesday, August 26, 2008

Plus de Cles d’Universe

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

So Much More Than An IQ Score

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?

Fun, Fun, Fun

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! “

Sunday, August 24, 2008

Should

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.

Surfing the Worldwide Wet

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


Tabblo: Surfing the Wet

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

Favorite Faces, Favorite Places

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!


Tabblo: Favorite Faces, Favorite Places

Monday, August 18, 2008

Exercise Exorcises

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).

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.

Sunday, August 17, 2008

A Little Dab Will Do Ya


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.

Friday, August 15, 2008

Love Letter

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

Tuesday, August 12, 2008

Our Young Man

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.

Life is Hard Enough

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.

Sunday, August 10, 2008

Keys to the Universe, Again and Again

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

Saturday, August 9, 2008

Yay

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.

Thursday, August 7, 2008

Update

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.

Tribute

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.

Wednesday, August 6, 2008

You Have to Ask

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.

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