Susan's Blog

Monday, August 10, 2009

Why-oming? Because it’s a great state.

I’m at my hotel in Wyoming. I gave my talk in the afternoon, for the Early Intervention and Education Program of the state department of public health. A lot of educators in the audience; some parents, too. As always, I thoroughly enjoyed the talk and the interactions with everyone there. A lot of questions, mostly of the sort: “What would you want an educator to know when dealing with your child?” The people who go into these professions are just amazing the way they care.

At night, some of the attendees asked me to go to dinner with them. It was really fun. We went to an Olive Garden, and then to the mall. I bought real cowboy boots — totally psyched to wear them in Boston! It’s funny how so many things in America are universal, like autism, malls and women who love to shop together; but also, how different. Here there are pick up trucks with gun racks; men with cowboy hats and cowboy boots (how can I get Ned to wear cowboy boots? Very hot.); and that lazy drawl. I overheard one man in the airport — tall, lean, crackly tan, wth a black bolo around his neck — saying into his cell phone: “So yoo won’t marry me raht now, but yoo know how I love yoo.” I thought, “She ought to marry him right now.”

And of course, the sky is huge, endless, and the air smells different — earthy, dusty. I love it.
When I arrived in Cheyenne airport — which is really like a couple of two-story buildings and a runway, and one guy manning the ticket desk and handling bags — I felt like I’d arrived in a foreign country. It was so sleepy, so deserted. I asked the friendly all-purpose desk worker, “Where is the shuttle to the hotel?” And he blinked and said, “Well, I don’t think there’s a shuttle, but I can call you a cab.”

The cab driver, too, was friendly, easy to talk to. He told me about the huge biker gathering here this week — bikers on their way to Sturgis, South Dakota for a big rally. Last week, he said, was the rodeo — Frontier Days, which sounded like so much fun, but the cabbie hates it because “there’s horseshit everywhere.” At the hotel, I asked about dinner and I was told the restaurant was closed, under renovation. “Where can I get a salad?” I asked. “Bout three blocks from here there’s an Outback Steakhouse.” But it was dark and I had no car. “Someone here could probably give you a ride,” she offered. I ordered Dominoes, sent to my room.

The women at dinner told me all about the rodeo, and what they do there, from wrestling steer to riding a bronco who is wild because his testicles are strapped down too tight!

I leave tomorrow morning, back in Boston in time for dinner. “I’m not cooking,” I told Ned. He already knew that.

Friday, August 7, 2009

Unique Eunice

The magnificent Eunice Kennedy Shriver is critically ill. I just want her to be okay. Her vision is the reason that Nat has a social life and is a terrific athlete. Through her Special Olympics, she also gave my family a place where we could feel just like everyone else. I met her once: a fiery, determined, no-nonsense woman who made things happen during an era when things were very different for the disabled. No one thought the developmentally disabled were capable of anything except taking up space. Eunice proved them wrong by giving them a chance to compete in sports. Apparently she brokered deals on both sides of Congress to get this thing to happen and she never left her brother the President alone until he helped her.

Eunice Shriver always has found a way to get her way; I hope she succeeds this time.

Wednesday, August 5, 2009

A Busted Knee is Better Than A Busted Heart

Something’s been bothering me now for two days. In fact, I’ve gotten almost as low as I used to get, and this has not happened in more than half a year. Ned kept asking me what was wrong but there was only a blank bad feeling. I am not one to just sit with it, even though that is the counsel of many I respect; no, I like to figure it out.

I did a cataloging of things going on in my life, and when my thoughts alighted on Nat, the pain was sharp and fresh. Yeah. I’m not happy with how things are with Nat. Every time I see him, it is too compacted a visit. I hate the phone conversations because they only make me sad. He never seems light and bouncy. He always sounds flat.

But he is autistic. How should he sound, how should he be, given that his disability affects communication? In fact, how do I have a satisfying relationship with someone who has some pretty severe aspects of autism?

I don’t know if Ned feels this problem as acutely as I do. I know that I am not one for whom clipping toenails is the way towards a close relationship. Ned is able to connect and feel in a much more silent and still way than I am; it is a gift of his. Sweet and discerning; that is Ned. But I need more. I told him in a big crying jag this morning that I wanted Nat to come home to live. I wanted to take care of him again. I didn’t want to have to think about the future, how he would live independently in 1 and 1/2 years. I just wanted him here so that I could re-establish what I used to have. It was just like the old days, when I would just force everyone to stop the presses and change things because it did not feel right. I have never been told by some Expert what is right for Nat — mostly because I don’t believe there is any such expert. Oh yeah, it’s me.

I don’t know if I can explain what I used to have with him. There was this ease, this lack-of-awareness, this no-self-consciousness that I had. I could exist around him and he around me, and we were in tune — not all of the time, but enough. Now I’m like a Divorced Parent (and I mean no disrespect to anyone who is divorced; I am using a phrase that I have heard, that describes a syndrome where the parent who no longer lives with the kid feels an urgency to Superconnect with the child, to make up for lost time when they are not together). I feel the need to observe and make every moment count with him — and so I am not joying most of those moments with him.

He is also a bit more standoffish. Is that normal? He is nearly twenty. So probably. But how am I to know if it’s okay or not? He is my oldest! What can I compare it all to? So I compare him to Max, who is also more standoffish, but also who has a reassuring smile and demeanor, letting me know all is well.

Nat does not often use a social smile. His smiles are reserved mostly for his own private jokes. I have to work hard to plumb those depths and figure out what he is joking about. Get a life, you might say. Well, just try being me for a second and you will realize that this is my life. Or, a big part of it. My children are the biggest things that ever happened to me. My Nat is my firstborn, the one who changed it all for me. And I feel adrift from him and I want him back.

So — I went on an 18-mile bike ride with no music (I washed my iPod accidentally and it turns out they don’t like being clean). But this gave me a chance to think, my favorite and also most hated pasttime. So as the road thrummed against my fat tires I wrestled with this. I was filled with a Nat Problem, and to tell you the truth, it felt good. All his life I have had those, and I have become used to having to think them through and figure something out. But in this last year, with him living elsewhere, there is less to think about. His daily needs are attended to by others. He has all of his goals and programs he is working on. Those kinds of issues are not my purview at the moment.

But this one remains: trying to be connected to my autistic adult son who no longer lives with me. And the answer came to me at the twelfth mile: change my attitude. Lose the panic. I have to try to enjoy him without the pressure of making every second count. I have to stop being afraid or reluctant to take him places. That’s old shit. He is calm; he loves going places. He loves being among people. He is — knock wood — rarely upset enough to hurt himself or others.

I have always pushed myself to take calculated risks to get where I want to be. It is time to go out into the world with Nat, fearlessly and with a full and optimistic heart. Others do not have to change; Nat’s living situation does not have to change for me to feel happy about him. I have to change in order to feel happy about him. If I want him back, I have to come back to him.

I bumped along the road, savoring my solution along with the occasional drop of sweat that trickled down my face. I hardly noticed my surroundings. All I felt was a charging certainty, and an eagerness to tell Ned — and to see Nat. I rode up the final hill in the hardest gear.

Tuesday, August 4, 2009

The Penn is Mighty

I have always loved University of Pennsylvania, my alma mater, where I learned about Tolstoy, Sartre, and Voltaire. Where I became a city girl, in lovely Philadelphia. And where I met and fell in love with Ned Batchelder.

Now I love Penn even more. I just came across this item, thanks to the wonderful blog Left Brain, Right Brain. Penn Medical School is looking for a post-doc to research autism services. A much-needed area of research. Here is the job post:

Postdoctoral Training Fellowship in Autism Services Research

The Center for Mental Health Policy and Services Research (CMHPSR) invites applications for one- and two-year post-doctoral fellowships in children’s health services research, with a specific focus on the organization, financing and delivery of care to children with autism spectrum disorders. The fellowship is funded through a research grant from the National Institute of Mental Health entitled, “Interstate Variation in Healthcare Utilization among Children with ASD (5R01MH077000).” This study combines national Medicaid claims data, information on local healthcare and education resources, and state-level policy data to examine associations between policies and healthcare delivery to children with autism.

Fellows will receive training in health policy and services research methods and in the clinical presentation and care of children with autism. Training activities include intensive mentorship from a multi-disciplinary team of faculty, participation in didactic courses and lecture series, clinical observations, and guided research activities.

We seek applications from persons with a PhD or equivalent in psychology, sociology, public health, economics, social welfare, or other related fields. Preference will be given to applicants with strong statistical skills and those with previous experience analyzing administrative data. Knowledge of children with autism or other psychiatric/developmental disabilities is preferred but certainly not required.

Applications will be accepted throughout the year. Recent graduates and those seeking to enhance their skills in new areas are welcome to apply. Applications should include: 1) Cover letter and CV; 2) List of degrees, dates of conferral, focus of study & institutions; and 3) Current and permanent contact information (address, phone number, e-mail). Please e-mail complete applications to Lindsay Lawer at

For further information, please view our web sites at and

(note: edited to correct who the principle investigator is on this project)

Read more:

Saturday, August 1, 2009

Down to Earth

Ordinary Saturday, yet not. Ned and Max are away for a few days, at a conference. I am home with Nat and Ben, not the most comfortable duo. I am trying to feel comfortable, but the fact of “trying” probably rules out the possibility. The thing is, I want us to have family things, by which I mean, things we enjoy doing together, but those are actually few and far between.

So I got to wondering, why does family = doing things together? Maybe in some families it means parallel play because those families prefer their own brains to mixing with others. I do not mean only Nat here. Ben and I both have our own stuff to do. Ben’s miles of piles of pads filled with stories are only part of this family landscape; there is also my own detritus: my open laptop, my partially edited MS, my latest crossword puzzle and book (Jessica Shattuck’s Perfect Life).

Still there was the compulsion to spend our Saturday morning right, so I started by making them French toast (in France this is called “pain perdue,” literally lost bread, and actually meant to be “about-to-be-tossed bread.”). There was only thick whole wheat, so I thought I’d ride my bike to Kurkman’s, a really great convenience store nearby, and get some challah. As I gathered up my things, Nat sprung up from his post on the white couch and started a very animated stomping. He looked serious and there was a little bit of high-pitched moaning thrown into his self-talk.

“Nat, what’s wrong?” I asked, which is the stupidest thing for me to ask. What’s he going to say? Then I did stupid thing #2, which was to make him hug me. When he is this agitated, the hugging might turn into clawing. But I felt that it would not, and I just hoped, like the foolish optimist I am, that it would work.

Nah. He was just a live wire. I wondered if he was uncomfortable with the idea of my going out and leaving him with Ben. I could not go to Kurkman’s with him like this. “Okay,” I sighed. “I’ll just use this bread.” Gradually Nat calmed down, so maybe I had been right.

The french toast was a bit perdue in all the egg glop and then in a pool of syrup on their plates. Nat had taken so much syrup, looking at me all the while, waiting for me to say, “stop!” that I had to put another, bigger plate under his breakfast plate. Ben liked the stuff, and Nat ate many pieces, so I guess it was good. I only had one piece because I thought it tasted all wrong with wheat bread.

After breakfast, some Purposeful Activity. I asked Nat to mow the lawn, and for Ben to come out and ride his bike while I weeded. Nat worked pretty hard for about 20 minutes, covering most of the yard with skewed criss-crosses that were more like plaid than mowed lines. No golf course would ever hire him but they have no imagination anyway. My weeding went well; it was one of those times that I completely submerged myself in the wet green stalks, like a jungle creature — that is the best way to truly clean it all out. You have to not mind the green bits sticking to you, the bug-noia (where every tiny thing that touches your skin feels like a bug), or the sweat rolling into your mouth because you can’t wipe it away with your muddy gloves. A lot not to mind, but if you can manage it, you have yourself a very satisfying garden border and a family morning well, if ordinarily, spent.

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