Susan Senator

Community is a funny thing. Tonight I went to a special Town Meeting, with only two warrant articles, both about a very slight tax increase. I was amazed and heartened by the fact that we had a quorum and then some, on this late day in August, when my town is mostly only haunted by families like mine who neglected to make end-of-summer plans, or overly-excited and lost college students. Yet, enough Town Meeting Members turned out to vote on this prickly question, considering the economy: whether to increase by .75% our meals tax, which would result in an annual increase to our town budget of about $800,000. But my town, I’m proud to say, has a strong sense of community, of doing what we need to maintain the services, pensions, healthcare plans, building renovations.

The vote was a slam-dunk, 166-6. Democracy in action; one opponent even spoke against, and everyone just listened — although I smirked a little at his incredibly weak argument. Anyway, I was pleased to share values with the majority of neighbors.

This morning, another encounter with community. I met with the man whom I mentioned in a previous post, who is putting together a group home in the next few years. He was able to explain to me so much more of what I need to know to seek out services for Nat. I must apply for his Section 8 voucher now, for instance. But I also must plan a future without that money, also. How is it all done? I’m finding out, bit-by-bit. But one thing that is clear: the more families you get to know that are like yours, the more successful you will be. You learn this as a young autism parent, when you are first beginning your journey into Special Needs Land. Who is it, but the other parents you meet, that help you get through it, that show you the ropes? The older parents show you an idea of the future; the younger parents let you in on the latest therapies, schools, and favored specialists.

We all need each other. It’s the only way. We are not islands. We are social beings. It is human nature to want to do good. I saw that tonight, at Town Meeting. I see it at Special Olympics, where people volunteer year after year simply to help a kid compete in a sport. No matter what you need, it’s always better to share the work, share the pain, and with others, to celebrate the victories.

If I have to lie, steal, cheat, or kill…
–Scarlett O’Hara, dealing with Turning 22

On Wednesday I’m meeting with a guy Ned and I met at a Turning 22 workshop. He’s got a kid sort of like Nat, and similar values to mine and Ned’s. He knows around 30 other families like us and has a large pool to draw from for creating an 8-client house. He is definitely a few steps ahead of us, in that he has already spoken to several charitable organizations that are involved with housing for the disabled. He also seems to know the Section 8 stuff backwards and forwards (Section 8 is the affordable housing voucher, which a disabled person waits perhaps a decade for, which ultimately allows him to pay a much lower rate for designated affordable housing). I have learned a lot about Turning 22, but some of it still makes my head spin.

Another friend of mine, also with a peer of Nat’s (actually the first kid he had a playdate with) is working on setting up an entire community, a way of life, where you have many choices of activities during the day, as well as access to therapists for S.I., O.T., etc. She has a mission statement and a philosophy, and a location in mind. She has also consulted with organizations for grants. She’s a real powerhouse; always has been. She set up an entire wing of her house for her son to learn, and she had a live-in teacher for him who was also his aide at school. Yes, she’s wealthy but that doesn’t mean it was all easy for her; she’s also dedicated and tireless.

I really admire both of these people. One is working with every aspect of The System; the other is working with all of her personal and professional connections to do it all privately. Both are serious about creating a brilliant future for their children. I am learning a lot from them. I did some frantic figuring the other day, scribbling numbers all over scrap paper (actually, it was the Sunday Times crossword puzzle). I googled some real estate in the urban Boston area, 10 bedroom homes, that kind of thing, to get an idea of cost. I estimated the salaries of two live-in personal care attendants (for eight clients) and real estate taxes to get the mortgage amount, and divided by 8 families. Anyway, it seemed a little bit possible, even without the Section 8, if there was help from a group like Combined Jewish Philanthropies, which sets up housing like what we are looking for (not Jewish-only, by the way; CJP is a fantastic organization that does a ton of remarkable things for the world at large).

My number and this guy’s number were not that far off. My other friend’s numbers, however, are a bit too high for us. At any rate, I am trying to pick up another course to teach, to double my earnings. Ned and I are making plans, looking at savings. We have Max’s college a year from now, and Ben’s in seven. And we also have Nat’s independence is somewhere in between.

It is amazing how quickly all of this is upon us, but I think we can make it work. I have to think that, otherwise how will it happen?

A teacher who will improvise and innovate is a beautiful thing. I have been marveling at the way Ali got Nat to tell his story about camp, by using fill-in-the-blank. She structured his story, which I think is genius, given that Nat has difficulty verbalizing sentences that he originates. He is much better at being asked a question than given an open-ended assignment to talk about.

I love it when one of my sons is able to tell me what he’s been up to and what made him happy about it. They each have different ways of doing this, although Max and Ben both tend to pick unexpected moments, when the conversation is about something else, or the activity is about something else; and suddenly they bring up this thing that has been pressing in on their thoughts. I always have to stop, regroup, try to grab onto the salient points, try to remember what they’re referring to. Basically it is a big effort, but worthwhile. A glimpse into a loved one’s inner life is probably one of my favorite things to experience.

I’m convinced that Nat’s issues with speaking are exactly what his very first teacher (“Debi, You Teacher”) told us: that he tries to access the words but something gets in the way sometimes.You have to guide Nat. You have to know a little bit about what happened to him, so that you can provide him with that event’s structure, and let him come up with the rest. So The House people call us each night and tell us things like, “Nat played Connect Four with another kid,” or “Nat went shopping with Martin,” and then Nat calls back and I can ask him pointed questions, and get the precise info from him: “Nat, did you play Connect Four today?” I ask him this to alert him to the fact that we are going to talk about Connect Four, and get his mind switched over to that track. Then, after he answers, I can ask him a question I don’t know the answer to: “Nat, which boy did you play Connect Four with?” And 9 out of 10 times he can come up with an accurate response immediately.

I am imagining now how it might have worked with Ali and Nat at camp. She wrote up a basic letter home to Mom and Dad, and asked him questions, and told him to write down his answer, and she then wrote the answer next to his, in case his was too hard to decipher. My heart was in my throat as I read this letter, that had both Ali’s and Nat’s voices in it, and the artifacts that accompany the story, in a little box with “Aspen” carved on the lid.

People say I’m a dreamer
But I’m not the only one
I hope someday you’ll join us
And the world will live as one.
–John Lennon

I don’t think I said it clearly enough in the last post. What I want is not to have to be in The System anymore. I don’t want to have to worry about what The State will be able to do for Nat, and what he will be able to do in The World. I am so sick of the world and the state and the system. The system says that you can’t save up the money you get in SSI; you have to spend it all on your kid’s needs. But if he doesn’t need quite that much, the Social Security Administration will not decrease the amount; they will just take it away. You can’t just let the money accumulate beyond $2000. You can’t find a good investment for it and dedicate that entire thing to your child’s future. Either he spends it monthly, all of it, or it goes away. But if he has qualified for the entitlement, why not be able to invest it? Why should the Federal Government care if we use it monthly or in a few years, once it has increased in value as an investment? If he is entitled, by virtue of his disability, to a certain dollar amount per month, why can’t that entitlement remain as long as the dividends and principal go for that same individual?

Or how about this one? The State did not give one bit of doo doo when Nat was under 18 and getting medication. Once he turned 18 and we became his formal guardians, we have to apply to a judge yearly for his medication to be approved!

Why does the state care to the point of absurd micromanagement, and completely look away on other things?

For this and other reasons, I want a better system. I want to make my own system.

Just like when Nat was little, I want to keep him near me, and keep the world and its corruption away. Now I don’t have to keep the world away but I think maybe I want to keep the government away. It’s just too hard, and it’s just too messy.

How then do we set him up so that he’s okay, even when we die? How is the state going to do that any better than I can? And Karl Taro Greenfeld makes an excellent point in his book Boy Alone: When the parents die, even if the sibs can take care of the autistic sibling, he will lose some love from his life. Siblings cannot love him like his parents. Something like that. Very dark, but in some ways, its brutal simplicity resonates with me. I never assumed Max and Ben would take care of Nat one day. I just have not yet planned for that moment, other than by having a will. I joke with people when they ask me my plan for Nat: “I plan on not dying.”

Dying aside, I just want to simplify things. I want to scale back. I want to find a group of parents like us with kids like Nat and all together buy a house nearby with 5 bedrooms, let’s say. One bedroom for the live-in. A back-up staffer for when the live-in is sick or on vacation. Parents rotate who is the back-up back-up, so every four days Ned and I would be the back-up back-up. There would always be someone available to help out.

Four families would have to pay that person’s salary and all the food, etc. Each family would have to manage their own kid. Each family would have to book the fun events, get the kid a job (if that’s what they want to do), keep track of appointments.

Anyway, it would be the live-in’s job 1) to keep the boys safe; 2) get them to appointments; 3) get them to where they need to go; 4) get themto exercise and to have fun; 5) find other similar houses for broader socializing.

What would a live-in, well-trained person earn? The four families would divide that income into 4. Every year it would cost that much. That’s a lot. That’s one of the biggest problems.

Maybe there would be one extra part of the house, an apartment, that generated income. In my town, you can also rent out parking spaces for $100 a space.

Or what if the house was not as nearby as where I live, but was more rural? Like a 45 minute drive? What if it were like a farmhouse? What if there was a small farm that could generate a little income, like a greenhouse and a farmstand, tended by the kids? A horse to ride, ducks and chickens to tend.

Maybe one or two of my sons would decide that they wanted the simple life as well… Stranger things have happened.

It is nothing short of amazing that there is an organization like the IACC, Interagency Autism Coordinating Committee. IACC derives from the 2006 Combating Autism Act, and is charged to gather information from the public regarding the state and needs of the autism community to guide research, funding, policies, and to promote awareness of autism.

I feel that IACC does much more than that. Its very existence is a wonder, a miracle. Yet like most miracles and wonders, there is some heartbreaking difficult work behind it. To me, not much just happens in this life, or is simply there. There is always some kind of effort, whether through massive glaciers moving mountains over millenia, or a woman going through childbirth, fertility procedures, or adoption to bring a child into her life. Or the government sponsoring a forum for opinions, statements, views, stories about life with autism (even though the deadline was yesterday, it still may not be too late to get your statement in, you never know )– and then using that knowledge for the good.

I am finishing Karl Taro Greenfeld’s Boy Alone, and I am stunned regularly by the pain and difficulty that family dealt with. This is a portrait of a family slowly and torturously disintegrating because they did not know how and could not care for severely autistic Noah. Karl, the “normal” brother writes the memoir unapologetically and honestly, if a bit pessmistically. Even while Karl is often enraged and bitter about the fact that his brother Noah can do so few things that most of us can do so easily, at the same time he is keenly aware of his brother as a human being and a beloved sibling.

I am fascinated with the differences and similarities of that family, that era (growing up in the 1970’s, my own era), and that of today — and my own family, and Nat’s era. What is similar is the feeling of being alone, of there not being enough out there to help. The lack of knowledge in the medical community. The compulsion that society feels to blame either the parents or the autistic person for the condition of autism (once Bettleheim and his theory of the Refrigerator Parents had been moderately debunked, the Skinnerians moved in with their attitude that there is something inhuman about the way autistics act and therefore were justified in using aversives on autistics to break their spirit — er, behaviors.) There also still remains the fear that no one will love your child the way you do, coupled by the dread that you can’t live forever. That you can’t even do right by him now. The difference is that I don’t feel those things most of the time; even when Nat lived regularly with us those fears resided in the softer, darker parts of my heart, like heart disease, only to blast into the forefront of our family life with terrible pain when crises occurred. In those times we were confronted with that sense of abject, craven helplessness of how to do right by their children, just like Karl’s family felt — only they felt it most of the time.

So much in our lives as parents is about doing right by our children, or even just managing them, surviving, etc. We need more help in taking pleasure in them, too. Our children need help in figuring out how to follow their stars, too. I don’t know where that help can come from, I spent two years researching it for my new book (The Autism Mom’s Survival Guide). Sometimes the help comes from the outside, generated by organizations like IACC and laws like the ADA. Sometimes the help comes from within: one good friend who “gets it;” a spouse who can make you laugh. Respite. Or figuring out a connecting point with your child.

Boy Alone offers no answers. That’s one reason I am reading it. I don’t like books giving me answers, I like books giving me questions. The question I have been simmering from this particular book is, “How can I work things so that Nat is happy?” I remember years ago Ned asking, “Why does he have to learn social studies?” because he was not progressing in that or other academics; yet he needed so much more to get by in this world. Why spend so much of Nat’s time learning something he is not going to value or use? Recently Ned asked the same question: “Why does he have to work?” because working involves a job coach and a really understanding employer. For a pittance. You have to keep earnings down if you want to continue to get your SSI benefit.

At camp and at Special Olympics, we see Nat at his happiest. Physical activity, feats of derring-do, that is what Nat is mostly psyched about. When he can’t exercise, he walks miles in circuits throughout our house.

Where am I going with this? I don’t know. Mostly I am questioning once again the idea of following the recommended path. In Nat’s era, that path is to learn to work and to contribute to society — with society’s help. In Noah’s era, that path is to get all your autism squeezed or beaten out of you.

I wonder if Ned and I can create a path that leads to Nat living much of his life outdoors, running, climbing, sweating, throwing, catching. I don’t think he can be a gym teacher. But I wonder what he can do, to follow his heart and talents?

Self explanatory list…
1) Learning that Nat has so far done more things at his 4 days at camp than I have done in 46 years: rock climbing, kayaking, knee-boarding, and surfing!!!
2) Having B come down to greet me when I came back from an appointment.
3) Laughing at a joke with Max
4) Ned making me laugh about Blog Trolls
5) Getting back together with an old girlfriend for a dinner out –and it’s a gorgeous night!
6) Benji’s hair, which smells like a pencil
7) Bunny chewing in my yard
8) Nat is still moving forward; no plateau in sight
9) Nice relationship with my editor
10) Being alive

These things always do what they should for me, always make me feel good.
1) yogurt, banana, blueberries
2) 18 mile bike ride
3) Maxie playing his music right next to me
4) Benji taking Z-Brayes out of his box and playing with him
5) I.Ming with Ned
6) Hour of bellydance with no one here to watch
7) Plans to see a movie (Julie and Julia, I think)
8) Going to a wedding
9) Sunny day that was supposed to be rainy
10) All chores done

So today Max was sick. He was supposed to go on a long bus ride to vacation with Hannah and her family for a few days. He was with me to pick up the car and as we waited for it to be brought out, I looked sideways and saw a very down look on his face; highly unusual before a visit to Hannah. He told me he was nauseated, maybe anxious about the bus ride. I gave him a Pepto and waited, driving towards the station anyway.

As we made our way through the madness and crooked, curved streets of downtown Boston, he was not getting any better. I touched his face and it was clammy. He got on the phone to Hannah and kept apologizing. I turned around to head home and he told me he was feeling better. I turned back around, miraculously locating Storrow, etc. I noticed that the Rose Kennedy Greenway was complete, something I’d been dimly aware of, and how beautiful this was, this triumphant achievement in highway landscaping. This park was the result of the infamous Boston Big Dig, now complete.

Anyway, as we neared the station, once again he was nauseated. This time I was headed home for good. More apologies to Hannah. I said, “Don’t be so hard on yourself! Everyone gets sick sometimes!” And he stopped. He has a big conscience; too big, sometimes. But I guess this was how he managed his own disappointment — by focusing on hers. Very like Ned, I think.

He went up to bed and I bought groceries. Ben was extra solicitous, something I have noticed over the past months. He is now the direct opposite of what he used to be: compliant, happy, affectionate. Yet also, intimidated by me. Not by anyone else; just me. He seems to be terrified of my anger. Anytime I raise my voice — which I do, mostly because I’m simply loud, and excitable — he runs to check on my mood.

What has happened here might be that he is trying to adjust to his own growth. His growth has always been very visible to me. When he was a baby he would suddenly clench his fists and grit his teeth, but was unable to say what it was all about. I think he was maybe angry or frustrated but had no words for it. As he got older, it seemed that his creativity was lightyears ahead of his expressive language. He could not get his thoughts out in words, but he did in stories and drawings. And lots of anger that would flare and dim.

Now he seems brighter, lighter. He is more fluid in his moods. But there is that attachment to me that seems a bit anxious. Maybe he is also anxious about Nat leaving home; maybe he feels somehow responsible or scared that it will happen to him, too. Oh, God, I don’t know.

So I went out to Kurkman’s Market to buy some ginger ale for Max to settle his stomach and I noticed the Hershey bars while standing in line. I thought of how my mom and dad always said that chocolate bars were good for an upset stomach. I realize now that that is probably not true, and yet — they never did me any harm, upset-stomach-wise.

I put three bars on our counter and just went about all the chores: laundry, cleaning the house, cutting the grass. After I gave Ben lunch he helped me carry loads of laundry up and even folded with me. Well, why not? They have to learn all these things, just like Nat.

Back down in the kitchen, Ben asked, “So are those chocolate bars going like to Extreme Sports Camp or something?

“What?” I said. “Oh, you mean to Nat? Because you want one?”

“Well, yeah,” he shrugged, not wanting to seem too eager in case the answer was “no.” Max is like that, too: don’t want something too much because it is too disappointing when you can’t get it. How did this happen? I can guess but I don’t want to.

I had never intended to give that chocolate to Nat. I had bought three: one for Max, one for Ned, and one for Ben. Well, I had bought four, but the fourth was for me, if I dared.

“No, one is for you,” I said, kind of vehemently. Probably not the best way to answer. He grabbed a bar and gobbled.

I figured I would take Nat downtown to the Gap and get him some sturdy sandals for camp. Today was a day where I felt anything was possible — I was feeling my best — and only as I was headed out the door did I realize that I was going with Nat and I hadn’t even second-guessed the decision. Cool. Growth.

A hot day. The car felt like the inside of my dryer, without the nice smell. I regretted not reaching out to party bus rentals in jersey city nj and not renting a better car from them. Nat sat in the back seat, limo style, as usual. I drove down Harvard Street into Coolidge Corner; no spots. Headed around the corner down Babcock and backed into a good spot not too far from the Gap. I shoved the shift towards Park and the head snaps off. The car could not be put into park. Therefore it could not be turned off.

Already in a sweat, I struggled to push the broken piece back on, only then noticing the chewed off corner; it was completely cracked. I heard Nat rustling in the back seat, already alert to the fact that the usual was not occurring.

“I think I have to call the Volvo store,” I said cheerfully, as if I could fool Nat into thinking all was well.
“Ayah-hoom-volvo,” Nat said.
I called Volvo and asked them to come help me — they have a fancy SUV that comes to your house when your car won’t start. Not this time. They told me I’d have to call a tow truck; Roadside Assistance. I tried not to yell but I did tell them about Nat. Blah blah blah, autistic son who could blow any minute. I was afraid that a wave was coming towards me.

Yet I had no evidence of such.

I found out from Roadside Assistance that it would be 45 minutes. Panic rising, I called Volvo back and yelled at them. Blah blah blah, autistic son… They tried to soothe me, telling me that was the best they could do, and, wimp that I am, I rolled over in moments, thanking them profusely.

Call to Ned. “So — when they tow you, you can walk home, right?”
My heart broke. I was feeling very sorry for myself. “Ned. It is 90 degrees out. I don’t know how Nat is going to be.” I look in the rear view mirror and a sweet open face was staring back at me. Lots of self-talk, head bouncing, smiling. Well, he could have a tantrum any minute, right? Reluctantly Ned said he’d come get me, 50 minutes away.

The tow truck came exactly 45 minutes from the call. A sturdy young man leaped out and basically pushed my car out of the spot where it was parallel parked and managed to drive it up the truck. Nat just walked a circuit around the sidewalk while I watched. Five minutes later the guy drove off. We had nothing to do. We were hot, but suddenly I felt light and happy. Nat was just standing around, willing to go anywhere, do anything. Just an afternoon out with Mom, who broke the car.

We went to the Gap, then we got ice cream. Ned showed up soon after with that look on his face. Yeah. We could have walked home.

Hello all —
A journalist from Parenting Magazine is doing a story on autism/adhd and marriage. It sounds like she is trying to be positive in tone. Anyway, she is looking to talk to parents who have autistic children ages 8 – 15. If you are willing to talk to her, please email me personally at susan@susansenator.com

Thanks!!!

Expecto Patronus!
–Harry Potter, defeating a Dementor

It seems that the way I learn things is recursive, a spiral that moves upward but never remains forward and clear. Right now, however, my point in space is right up front, clear, and scintillating — in terms of Nat leaving for his camp on Sunday.

In order to explain what I am talking about, I have to go backwards. Last night I was having one of my usual blasts of self-doubt; this time it was about how to get Nat to the airport and on the plane. The logistics alone are an entire blog post’s worth of space, because he’s going with a staff person from his House, and not one of us. He’s coming here Friday, but going back to the House so that he can then go to the airport on Sunday, the day camp will start.

So I was thinking about what would be best: for me to go with him and his aide and help them check in and then I would leave for the Cape to celebrate my mother’s 70th birthday…? Or should I say good bye to him on Saturday when I bring him back to the House? Or should I drop them both off at the curb at the airport?

These deceptively pragmatic concerns floated around like Dementors above my bed, and suddenly the clammy soul-sucking fear was revealed:

What If Something Terrible Happens…? How Can I Let Him …?

I lay there, wanting to wake Ned up and go over this, but I knew I had to let him sleep. My mind drifted further back, to a conversation I’d had Tuesday night with a friend. She had been telling me about her 19-year-old daughter who was now in college and all of her own gut-wrenching fears and guilt around letting her daughter just go and make mistakes, etc.

Usually when I hear these kinds of things, I find myself nodding but also thinking, “Yeah… but it’s different with Nat…” But suddenly, in the darkness, I had a vision of Max, graduating this summer from high school, and proposing a trip to — oh, I don’t know, Europe? California? The Andes? And how I would probably have to just let him go (provided he could afford it and we could discuss the plan). Also, though, how I would worry about every single thing he could possibly encounter, every disaster, every scary tragedy. The very same, utterly no different at all from how I am worried about Nat right now.

I heard my friend’s voice saying, “Yeah, but we just have to let them! And I think that’s really the right thing!” But she was almost frantic saying it, so I could feel her honesty, her conflict, and it resonated with me.

I would be just as worried about Max going off. Terror and tragedy around one child is exactly as terrible as around the other. Autism does not intensify the bad event. Bad is bad. And somehow knowing that, I relaxed! I had to let Nat go off to his camp without us on the plane or nearby, I had to let it happen. Horrors can always happen, but I don’t have to fixate on them. It is not a bad thing that I have planned this trip for him; it is actually a wonderful thing!

Exhale, close eyes, sleep.

I was brimming over with thoughts on Special Olympics, and so I put together a couple of commentaries while sitting in my hotel bed in Wyoming one morning two days ago. Here is the commentary that was posted on wbur.org, a piece with excerpts from a Washington Post oped I did a few years ago; and here is the oped that appeared in today’s Boston Globe. Obviously I think the world of Eunice — and her family. I’m not a starry-eyed Kennedy fangirl. There is real meat to her achievements. How many of us have dreamed of starting a school for our kids, where they would be understood, at last? I know I have. But did I go ahead and do it? No, and not because reality intruded, but because Ned did! But — Eunice actually made Camp Shriver. Her son Tim told me what it was like that morning in 1962 to wake up and look out his window at what was going on in his backyard. Mostly he thought, “What will I do today?” Kind of sweet, and look what he ended up doing, as a grown man!

Granted, Eunice Shriver had a bit more access to key people, resources (and a bigger back yard!) than most of us, but still, to see it all through and then grow it to an international movement through your children — just beyond.

It all comes down to our kids, in the end. Special O makes Nat happy, helps him learn. Helps him connect with others, and be a hero to his family. What could be more important?

This piece was excerpted from an essay I did for the Washington Post, in 2005, when Rosemary Kennedy died. WBUR may be linking to it on their site as well.

‘Let Me Be Brave’
The Kennedys’ Gift of the Special Olympics
Excerpted from the Washington Post, January 16, 2005

My family stumbled into the Special Olympics when my autistic son Nat was 10 and experiencing one of the most difficult phases we had ever encountered. Before then, we had only known Special Olympics as a charity we gave $25 to every year.

Nat had just started a new school program and was struggling daily to remain there. Every day they told us how Nat had become aggressive “out of the blue,” and that they did not know what to do for him. Even with many meetings at the school and observations by autism experts, the program couldn’t help him. By April he had been expelled, sent home until a new placement opened up.

All that winter, despite what was going on in school, we forced ourselves to take Nat to the small gymnastics class being offered at the Massachusetts Institute of Technology by the Special Olympics. I hated taking him, because it made me anxious to be watching over him, ready to jump in at a moment’s notice if he became aggressive with anyone. My husband had less difficulty controlling Nat, so he often went with me or instead of me. Other autistic boys were in the program, and as the parents got to know each other, we also got better at helping the coach work with our kids. The coach, a cheerful college student, was happy to have our direction. By January she had taught the kids to tumble, vault and, most impressive of all, to stand in line and wait their turn.

In early spring, our home situation had become very shakey because Nat was so volatile. I feared for the safety of our family. I needed to be able to do something for Nat, too, to help him keep it together. Something told me I could turn to the coach.

“Sure,” she said, “I can help.” Her courage and enthusiasm reflected the Special Olympics athlete’s oath, which originated with Eunice Kennedy Shriver: “Let me win, but if I cannot win, let me be brave in the attempt.”

She came to our house several days a week and took Nat to the park, where they used the benches and the climbing structures as a gym. Together they practiced his gymnastics routines while I had some time alone with my younger son. I can’t say for certain what made the difference, but I believe that those few hours spent outside in the bracing air with his coach, who really understood and cared for him, helped Nat feel calm and safe. Our difficulties finally began to ease.

By June, Nat had his routine down cold. When it was his turn to compete, his coach came out on the mat with him to cue him. Afterwards, seeing Nat bedecked in medals was one of the biggest pleasures I had ever had as his mother. Watching him go off with his teammates, knowing he was going to be okay, I felt like a regular mom, no longer a person in crisis.

Perhaps, then, the greatest gift Eunice Shriver gave to families like mine was not necessarily the shiny gold of victory but also the chance to experience all the mundane little things in between, such as the drudgery of practice, the slow dawn of “getting it.” For me, Special Olympics will always mean the gift of blessed predictability to our turbulent life. Eunice must have understood this firsthand by the way she worded the Athlete’s Oath: “Let me win, but if I cannot win, let me be brave in the attempt.” Not only the athletes, but their families as well, experience bravery every time they let their special children go out into the world and struggle. I believe that Eunice, too, understood that the thing that makes a difficult life worthwhile is to emerge stronger and better when it’s over. That is how she lived and that is how she died.

I don’t know what to say this morning. I dreamt about Tim Shriver last night, whom I have come to know over the last few years as a sweet, brilliant, and contemplative man. Probably more like his father Sargent than his mom Eunice, but still able to leap tall buildings in a single bound, Kennedy style.

I kind of knew Eunice had died as I was waking up. I wrote something yesterday — an oped kind of essay — because I had wanted to send it out while she was still alive; a tribute rather than a eulogy. I’m sad that she has died, but she must have been struggling a lot, so…

Here is Tim’s letter to Special O families. I bolded the part that especially hit home.

Dear Special Olympics Family,

It is with a heavy heart that I write to let you know that my mother, Eunice Kennedy Shriver, passed away early this morning.

At the time of her death — as it was throughout her long and full life — she was surrounded by her family, her husband, her children, her grandchildren and those who loved her.

Though at the end her body had become weak, her heart was strong and it was abundantly full. It was overflowing with faith in God’s will. It was replete with a sense of contentment about the past and a deep hope for the future. It was full of love and gratitude for those to whom she had dedicated her life’s work and who had in return given her life the gifts of clarity, aspiration and friendship.

Her heart was full indeed of faith, hope and love. She was very much at peace.

As I write to you, her extended family of the Special Olympics movement that she loved so deeply, it is hard not to recognize that these same traits that sustained her at the time of her death had fulfilled and motivated her throughout her lifetime of advocacy for people with intellectual disabilities — or as she always said, her “special friends.”

Her faith in the athletes of Special Olympics was unfailing, even from the very start. When she was young and Special Olympics was still just an idea, few people particularly cared or knew about people with intellectual disabilities. Fewer still shared or understood her dream to awaken the spirit and denied potential of this forgotten population. And yet, though others could not see, she still believed, conceiving Special Olympics in her heart before she could unveil it on the field of play.

She believed that people with intellectual disabilities could – individually and collectively – achieve more than anyone thought possible. This much she knew with unbridled faith and certainty. And this faith in turn gave her hope that their future might be radically different.

Her faith in them allowed her to hope for an army of supporters – coaches, volunteers, donors, fans – that would emerge and grow and become the foundation upon which a worldwide human rights movement would be built. It allowed her to envision a world of formerly skeptical people who would witness the accomplishments of our athletes and say “Yes! I understand!” Hope allowed her to see the invisible, fight for the isolated and achieve the impossible.

But mostly, it was her unconditional love for the athletes of Special Olympics that so fulfilled her life. As Thomas Merton, the Trappist monk and social activist reminded us: “the beginning of love is to let those we love be perfectly themselves, and not to twist them to fit our own image, lest we love only the reflection of ourselves we find in them.”

Her love for the athletes of Special Olympics was always just like that. She never hoped that people with intellectual disabilities should be somehow changed into something they were not. Rather, she fought throughout her life to ensure that they would be allowed to reach their full potential so that we might in turn be changed by them, forced to recognize our own false assumptions and their inherent gifts.

She fought the good fight, she kept the faith, and though she knew the race for equality was not finished, she knew that the army of supporters she had hoped for long ago had become a reality that would carry and someday complete her vision. On her behalf, as we prepare to say our last goodbyes, my family and I thank you for your shared commitment to that dream.

My family and I would be proud and honored if you would take some time to learn more about her life, share your own remembrances about her, and read the remembrances of others at a website that was recently established to honor her legacy, www.EuniceKennedyShriver.org. In the spirit of her hope that everyone would share in the power of Special Olympics, I hope you’ll not only read and contribute to the site, but share it with friends.

With great appreciation,

Timothy P. Shriver
Chairman & CEO
Special Olympics

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.

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.

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.

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 llawer@mail.med.upenn.edu.

For further information, please view our web sites at http://www.med.upenn.edu/cmhpsr and http://stokes.chop.edu/programs/car/.

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

Read more: http://leftbrainrightbrain.co.uk/?p=2692#ixzz0NGsgsmSH

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.

This afternoon I was telling a very wise woman I know about how it is with Nat these days. I feel such a thin connection with him, because I am still relying on the old connection, that was born of living with him, existing very close in space together. Doing things with him and for him, was the way Ned explained it. “That’s why I take walks with him when he’s here,” he said. “And why I clip his toenails every time he comes home.”

This little admission filled me with delight. It was so Ned, so basic, so elemental and true. He didn’t examine it; he just did it. But then I realized that there are so few things that I do that way. I’ve been wanting the relationship to snap back to the way it was before Nat moved out, where he was just one of my boys and I could even take him for granted a little, the way you do with loved ones. You have to be able to take them for granted some; it is how we live together day-to-day. You can’t always be noticing someone in your life because then you’d always be aware, rather than just being.

I long to just be with Nat, not conscious of our time together. But I don’t know how to make it feel that way again. Every weekend when he comes home it feels like I have to make our time Count. I can’t just relax and feel that it’s okay.

I’ve been hearing for years the advice “you just have to sit with it.” This may just be the therapist’s favorite refrain. “Sit with the feelings and see what comes up,” was what my beloved (former) therapist once said to me.

I haven’t been in therapy for a while, and it’s not because I’m all finished. No way is that true. Rather, it’s mostly because I did not feel that the process was meaningful to me anymore. It felt like I was spinning my wheels, digging up rotten old stuff that was just hurting me and not going anywhere.

Today I thought I understood a little better how it all fits together — sitting with it, and being with Nat in a natural way. And the answer is that there is no answer. It just is. It is an uncomfortable thing in my life, one of the many things I have to just kind of sit with. Perhaps once I turn my mind to other things — like writing and dancing — and feel the peace that they bring, I will be able to carry that state over to my times with Nat. I hope so.