Susan's Blog

Thursday, July 31, 2008

Wednesday in the Park With Nat

Yesterday I went to Nat’s school to see him, for the first time since the move-out. When I came into his classroom, he was sitting at the computer, and for a moment, he looked exactly like Max: blond, thin, hunched in front of a computer screen. His teacher called to him, “Come see who is visiting you!” and he turned around, and the big blue eyes widened. Then he turned right back to his screen, in familiar Batchelder-style focus (the Senator family is not big on focus). He was doing data entry, and he was doing it well.

I waited there, already chastened by this big reality check. No one there appeared to be suffering terribly from homesickness, at least not at the moment. When he was ready, we left. I drove to a nearby McDonalds. It was all very civilized; Nat chose the table while I got the condiments. He was very subdued: no bubbly sing-song talk, no puppet hand. No smile. This bothered me. We ate quietly. I had a glimpse of the future, visiting grown-up Nat. Sitting at a table, sharing a meal, not talking. It was okay. But I wanted a smile.

Yet I felt so relieved just to be there with him, to look at him, and to ask him questions every now and then. I told him about how he has two houses now. How the school house is really like camp. And most importantly, I told him when he was coming home next: Friday.

This decision had been made early that morning, when I woke up realizing that there was absolutely no reason why we couldn’t bring him home for a visit one week early. Just because it was recommended that he stay at least two weeks, based on what was successful for other kids, did not mean it was right for Nat. Suddenly, that morning, I knew in my gut, my Mrs. Dumbo gut, that my kid needed to come home as soon as he could, but in a way that made sense with getting him used to the new house. Ned and I settled on Friday night, and go back Saturday afternoon. Then he would have a chance to be with us some, but also, to see what the new house is like on the weekend.

Nat brightened when I told him this. He wanted to hear it a few times, the story of how Nat would come home Friday and sleep at the old house, and then wake up a the old house, and have lunch there, and then go back to the new house, and sleep there.

After lunch we went to a park by a pond and sat on a blanket in the grass. I was very hot and the grass was prickly and itchy. But the stillness around us was very pleasant. Deep summer. I showed Nat the stuff I brought: a Winnie-the-Pooh fleece blanket that Laura had sent him; some of his favorite Disney movies (Mary Poppins, Sleeping Beauty, Aladdin) and a sing-along. I also brought him some mail from his social group. We looked through it all. I tried to sing songs from one of the videos, and he sang with me. There was a flash of a smile, but not as much as I wanted. Then we got up, shook out the blanket, and headed back to school.

As I drove home, I realized that I was feeling better than I had in days. I had experienced some moments when it truly felt like we could do this, where Nat seemed resigned to the plan and where we could find new ways to enjoy each other. It gave me just a little nugget of strength that allowed me to forget about this whole thing for the evening, a touch of hope that we would be okay. All I wanted was to make dinner and eat it, just the four of us. Definitely a subset of who we are, but still a satisfying little group.

Tuesday, July 29, 2008

Strange and Mournful Day

If you wanted the moon, I would try to make a start.
–To Sir, With Love

Here is a column I wrote dealing with Nat’s move, for the Washington Post/Newsweek site called “On Faith.” This piece is a small nugget explaining one particular moment of dealing with this transition of ours.

I have had an especially difficult day today, because I had a bad feeling all day about my Sweet Guy. And when I called him at 4:30, he immediately said, “Go to _____Street, NOW. Go to _____ Street, NOW.” Meaning, home. My heart seized and I bit back tears. I also couldn’t help but think, such great, unprompted language!

“Nat, I know. Nat you are sad right now. But you will be happy soon. It’s going to be alright. I am coming to your class tomorrow, for a visit.”

Then he said — and I still can’t believe this — “I love you. Love you.” And he hung up.

Tomorrow, I’ll be there with chocolate and Disney videos. And maybe the moon.

Monday, July 28, 2008

After

First day. Ned took off from work, Ben was at camp, Max was with Hannah, so Ned and I took the T into Boston and had a leisurely lunch at an outdoor cafe in Beacon Hill. Very nice, but a feeling like I was watching myself through glass, or something. Ned kept snapping pictures of me, over and over, while we talked. It was odd, but kind of sweet. I felt like he was trying to make me laugh, by embarrassing me. He was literally keeping me focused on myself, and on him. I had some wine, and felt very drowsy. He was tired, too. We walked through the Public Gardens and watched the swan boats, bought ice creams and sat on a bench, holding hands. We kept checking in with one another: How you doing? Okay, I guess. The anticipation was harder than the actuality…

Got home, we both slept, woke up, ate a lot of cake, and I slept some more. Then, with the sun beginning to sink just a little, and the air loosening up its tight hot grip, I felt like I could maybe run. So I took a 3 mile run. I could barely breathe. My whole upper body felt bloated from the cake and stiff as a 90-year-old. I ran in shuffling steps, choking out the first two miles. Then, suddenly, the third mile was a breeze. Sweet Melissa came on the shuffle: Crossroads, seem to come and go… and I felt tears rise up, but still at that same remove, that through-the-glass feeling, which kind of shut the tears out. It’s like, I thought about crying, and I just felt that I could not do it just then.

Then, I ate a dinner that Max and Hannah made (!) Did they decide to do that because of today? Because of Nat being gone, as a way of being supportive? I kind of think so. I am just incredibly moved by their sweet relationship, how much they get each other to grow. Hannah seems to be teaching Max all about health and cooking. They are so in love, and everyone in their orbit feels it and falls in love with them.

I took a shower after dinner. Then I heard from the House and Nat. He sounded very small, far away, tired. He seemed to want to stay on the phone with me, because he didn’t just say, “How are you, good. Yes. Bye.” So I even called him back. We, of course, did not know what to say to one another, so I just blabbed a little and told him I was kissing him into the phone. Then, at last, he just said, “Bye,” and hung up. So I guess he had had his fill.

Sleep well, my darling.

Transition Object-Shun

This morning I was thinking about transition objects. What a stuffy, stiff, staid term for something utterly otherwise. So some people call them “lovies.” Everyone I know had one:

Mine: “Lush,” (pronounced “loosh,” but never to be confused with the awful “louche.”) My little baby blanket, blue with satin edging
Ned: A pacifier, name unknown
Laura: “Blanklin,” her baby blanket
Nat: “Floppy Bunny,” and then “Funny Bunny,” (pronounced “Fuh-ee Buh-ee”)
Max: “Blue Blankie,” which was originally a shower gift a relative gave me, for Nat
Ben: Superman, a tiny plastic Happy Meal figurine, with cloth cape and arms that snapped upward in flying mode when you pushed a tiny button on him.

Some people hold onto theirs, others must get rid of them, or have had theirs thrown away in order to break the habit. It seems awfully harsh and against the intent of a transition object, for someone else to decide it is time to throw it out. What about the lost lovie? Are they lost because the owner feels it is time, or are they lost in a tragic way?

I am not sure what happened to my Lush, or Laura’s Blanklin. I suppose Mom could tell me, but I don’t really want to know. (Anyway, I still have Shed, my baby doll, whom I named after my Mom, “Shelly.”) I do know that Ned threw his pacifier out one day while in his carriage, on the Grand Concourse in New York, and never looked back. Did his Mom know, and feel secretly glad for Ned to be done with this teeth-ruining habit, and purposefully not retrieve it, or did she not know?

Max still has Blue Blankie, a tattered clump of blue and dirty blue yarn. He is somewhere in Max’s room, but no longer on his bed. Benj lost Superman in the sands of Nauset Light Beach, Cape Cod. He used to love to bury him and then find him, and one day, he just could not find him. We searched and searched, and dug and dug. My parents even returned there the next day to search the spot. Max wept over Ben’s lost lovie, as did my parents. But Ben did not. As deeply as Superman was needed and loved by Little B (he traveled in Beastie’s warm, fat little hand for about a year), when he was gone, he was gone.

Nat had Floppy Bunny, of Nat Book fame. He loved that guy, always sucking his thumb and rubbing one ear under his nose while he did so. Floppy Bunny, bought by my parents in somewhere like Williamsburg, went everywhere, but one day, while out on a walk with Nat and Max in the double stroller, we found we had returned without FB. In a panic, Ned went back to the area we had walked, and there he found only the ear of Floppy Bunny. What sort of grisly event had occurred? We didn’t even want to think of it.

How would we tell Nat? What if he were sad beyond belief? We already suspected that he had some kind of difficulty understanding language. We acted quickly, and took a similar bunny Mom and Dad had given Max. Max had never really cared for this odd bastardized version of Floppy Bunny. Funny Bunny had a weird floppy-brimmed hat sewn to him; maybe this was the reason for the aversion. Nevertheless, Ned and I cut off the silly brim and then saw that Funny Bunny looked very much like Floppy Bunny. We gave him to Nat, who seemed happy enough to love this new lovie.

Nat has always been remarkably adaptable in this way. This is why we nicknamed him “Mini Man,” when he was a baby. He was so self-sufficient, never needy or clingy. He happily reached for me, but he was always content to be by himself, too. (I suppose you could say this was the autism. Or you could say it was the way Nat was. Or both.) When Nat started school, at age 3, Ned and I suffered terribly worrying that he would be sad without us. Ned stayed hidden outside Nat’s classroom for the first few days, just listening for the sounds of Nat’s agony. They never happened.

And so, today, after so many months of worry, angst, agony, and tears, we are bringing Nat to school, and allowing the van to take him to the Residences there after school — to have dinner, to sleep, and to begin his life there. Last night he seemed a bit anxious about the fact that he was sleeping there, rather than here, for a while. We realized that aside from maybe being a bit subdued from his roiling stomach in the morning, that what was bothering him were the words, “a while,” perhaps more than the fact of moving. So we picked a date that he would come home, in two weeks, and he seemed to be calmer after that.

I suppose — looking back at Nat’s remarkable Mini Man ability to “do what he can,” as we used to say, and to adapt to whatever is thrown his way, or lost — that I should be assured that he will probably do okay tonight in his new bed. This time, Ned can’t hide outside and listen for the signs of sadness. But — maybe he doesn’t need to.

Sunday, July 27, 2008

Cake Happens

The weather se perfect, day celebration.
–Nat, age 2 1/2, (1992) quoting from Babar the King, which he had memorized around the time Max was born.

What a day, what a party! Blinding blue sky, after days and days of rain, went along with my bouncy, happy mood. I had something to look forward to: lots of family, lots of Nat’s friends and their families (who are also my friends), Nat’s new housemates, and staff. A moonbounce, a large fruit basket, and a cake that was fun and outrageously delicious: a 3-D cake model of Nat’s new home, complete with tall green frosting trees, a frosting Donnie, (the main house faculty guy), and some of the kids, and a blond frosting Nat. We all ate tons of it.


Tabblo: Nat's Graduation Party

And best of all, the real Nat grinned brightly almost the entire day, particularly when the van full of housemates pulled up!

* * *


–So then that happened.

Alec Baldwin, “State and Main”

…And just as I finished the above, I heard this terrible wretching sound: Nat was walking frantically around downstairs, trying hard not to vomit. Panicked House Barfies. “Go into the bathroom, Darling!” I said, pulling him into the tiny downstairs bathroom.
“NO,” he said.
“You’re going to throw up, Natty. Go into the bathroom. Let it out, you’ll feel better when it all comes out.”
Blooooh-eh! NO frow up.”
“Natty, no one likes to throw up, but you have to do it. Get into the bathroom.”
“Bloooooh-eh!” Splat! There it went on the floor in the main hallway. I put my hand on his back and propelled him into the bathroom, where he got rid of the rest of it, poor darling.

Ned and I stood over him. Then I put Nat into his bed. “Yes, yes,” he whispered, accepting whatever comfort I offered him: cold wash cloth, towel, kiss.

Too much cake, I guess.

Friday, July 25, 2008

Just As They Are

Nat baked cornbread for us last night. All I had to do was get out the ingredients and the measuring stuff (actually, he can probably do that, too. How could I not know that? He knows where everything is!). It was, of course, delicious. I kept thinking, “It’s the last time… for a while…” and then pushing that out of my mind to keep moving forward, forward. Lick the bowl, slam the oven door, set the timer.

But I ain’t no shark. Moving forward is alien to me. I am one big circle, all round and coming back to the beginning.

In the beginning, I had this baby.
And now, I have this young man.

It happened in the blink of an eye. Listen to me, I know. All I’m saying is, please, please, just try, try to enjoy them. Just as they are. JUST AS THEY ARE, you hear me? Try not to live their childhood in a blur of therapies, strategies, school placements, meetings, vaccine-hating, hand-wringing, neuron-mourning, diets, chores, appointments, grudges, and cursing fate. Try to just be, in their presence, in the present, with God’s present.

You don’t know what you got till it’s gone.

Wednesday, July 23, 2008

FYI

There is so much going on that I can’t begin to write about it. Later.

Tuesday, July 22, 2008

Sonny, One So True

A dear little feline friend is gone. I just wanted to post this, in his honor. And, of course, my own ineffectual way of thanking Sonny and Don for touching our lives, even for just two days. Don had lent Sonny to us, to see if my stupid allergies could tolerate a cat, and also, to see what the boys thought. The boys loved him in their own ways, and I just fell completely in love. I got no sleep that night, having moved to the couch to keep him from waking up Ned, with his 3 a.m. Motor Purries and Face Sniffies.

What a cat. He made fast friends with Ben — Ben! and my parents, who were visiting that day.

Oh, oh, oh. Apparently Sonny has not been around for weeks. I weep for Don and his family. I thank them for letting us delight in Sonny and I, for one, will miss him. As Don said, (and I’m paraphrasing because I’m too pre-coffee to look it up again) “Raise a can of Friskies to old Sonny, but try not to smell the stuff because it could make a billy goat gag.”

Sunday, July 20, 2008

Stayin’ Alive

When I was little, and I was going off somewhere with a friend or something, my dad sometimes used to say, “Oh, stay home with me and be my pet!” I would laugh, because we both knew that was ridiculous. I tried to picture me, a puppy or something. I wasn’t a pet! I was a kid with a life to live. But Daddy always joked about everything, even about the things that made him a little sad. I mean, he was happy to see that I had a life of my own, but he missed me, too.

I was dozing off today, tired from my run and wanting to close off my head a little. I have had this big, oppressive ache about Nat that just doesn’t go away. A heart migraine.

As my eyes closed, the thought came to me: You don’t have to do it. You can keep him home with you. I remembered how I wanted to do that when he was three and everyone was telling me he needed school, and a full day, full year at that. I wanted to keep him home, to keep him away from this stupid, demanding world. I wanted to teach him everything myself. I didn’t want to deal with special education laws, bureaucracies, methodologies, professionals. I didn’t want to deal with my fears and sadness. I especially did not want to deal with his difficulties with the world.

Ned was the cool washcloth on my feverish brow. Or the splash of cold water in the face. “You can’t do that,” he said. “You would never be able to be his teacher. It’s a huge job and you’re tired as it is.” Something like that. I sent Nat to school, and got used to it. So did Nat. He never once expressed anything negative about going to school. Not once.

All day today I have felt the secret relief of knowing how I can sabotage everyone’s plans. If I don’t like it, he doesn’t have to go. And if he doesn’t like it, he can just come home. I don’t care what anyone says or thinks. I am Mommy, hear me roar.

As I was driving Nat home from social group, where he attended a production of Bye, Bye Birdie, I suddenly realized that I did not know what Nat himself thinks about his move-out, now that he knows. My heart felt like it was splitting in two as I considered the fact that I really had to find out what he was feeling, now that he had a beautiful calendar and booklet that his teacher had made. And I was afraid of what the answer might be. But I had to know. I had to hear him say he didn’t want to go (“No X House!) (name changed to protect the innocent) so that I could comfort him, and me.

“Nat,” I said, turning down the radio, “do you want to go to X House?”

Nat stared straight ahead, and said slowly, “Ye-es.”

I have my own system of testing the accuracy of Nat’s responses — he has been known to default to “yes,” just to get people to stop asking him questions. I have to mix up the question and ask it again in a different way. Sometimes several times if I’m not sure.

“Nat, are you happy to go to X House, or — “

“Happy,” he interrupted.

“Happy or sad you’re going to X House?” I repeated.

“You happy you going.”

“Oh!” I said. I was about to say something wise and comforting, but when I looked at him he was smiling. I turned up the BeeGee’s Stayin’ Alive, a song I’ve always hated, but which he seemed to be enjoying, and felt my pain shrink down so that now it fit only me.

Saturday, July 19, 2008

To My Sister

Laura

Sitting here waiting for my coffee
A new morning opens, shaking off its damp birth
My throat is tight and my mind is already searching — what is it?
I see you, just behind my eyes, and I remember.
You helped bring him here.
Cheering at one leg while Ned cheered at the other
You were there when he came into the world
It is just so good that you will be here when he goes off into the world.

–Susan

Thursday, July 17, 2008

Paper Tiger?

Here is a column I did for today’s Tab:

Brookline –

Alfred Hitchcock had nothing on Brookline. You may not think of Brookline as a scary place, with its rolling hills, nurturing schools, snappy urban thing and placid parks. Especially placid parks.

Like many here, I especially love Brookline in the summer. Then I can take advantage of its loveliness, particularly by riding my bike in places that are far more congested during the rest of the year, or by taking a (fairly) solitary run at the Reservoir.

Last week I slipped out of my house for a Rezzie run, before everyone was fully awake and while the sun was still a gentle but insistent presence rather than a blaring ball of fire. I parked in my usual spot, the shady place just before the water fountain. As I swung my leg over the fence, I froze. There, not 20 feet away, was a coyote.

It was looking right at me, and it was quivering in a way that reminded me of a cat getting ready to pounce. I backed up and got into my car. I dialed information, to connect me to the non-emergency number of the police, even though this seemed almost like an emergency because the animal was acting very strange. I kept my eyes trained on it, terrified that it would race off and attack one of the other runners.

The other runners. I thought, “Don’t the other runners see this? Why aren’t they afraid? Stupid people, ignoring potentially rabid animals.”

Just then, the wind picked up. And I saw a flash, an edge — around the coyote. The coyote was actually only an inch thick! Fake! What the —? I hung up my phone before the police picked up. I laughed out loud and started my run.

As I moved down the length of the pond, I noticed an odd thing. No geese. Of course! The cardboard coyote must have been put there to scare them off, much the same way my dad puts up plastic owls everywhere to scare off woodpeckers. Set a thief to catch a thief, or something like that.

But just as I rounded the corner by the pump house, there they were, a whole gaggle of geese. A googol of a gaggle. And, as usual, I had to gingerly pick my way through them as they fed. I continued on my route, realized happily that there were no more geese anywhere else, and I could see why: more cardboard coyotes. So the geese had gathered in the one place where there were no decoys.

I ran more freely than ever, liberated from my fear of a wild goose chase. I saw a police truck nearby, from animal control. I stopped. “Hey,” I said to the cop in there. “Did you guys do that?” He stared blankly at me. He probably had to take a few seconds to realize what this strange sweaty runner was talking about. “The coyotes,” I explained. “I thought it was real when I first saw one.” Then the cop laughed.

“The town did it,” he said, “But we’ve been trying to get them to for years.”

“Oh,” I said. My mind started churning. Being a Town Meeting member and a former School Committee member, I am well acquainted with the Byzantine nature of Brookline politics. I could only imagine the intrigues, the machinations, the process that went on behind the scenes to get those damned decoys to the Rez. Had I somehow missed the Selectmen’s Committee on Geese? The Goose Study? The warrant article on geese removal? The debate on egg-oiling versus scrambling?

I guess so. But as I kept running around the (mostly) goose-free track, with the decoys flapping at me from nearly every corner, I felt happy and safe. I figured that even though I did not know who the good guys were in this latest bit of Brookline flap, somehow the plan had worked. No one was honking at me.

Only in Brookline would you find Wile E. Coyote actually protecting the Road Runner. Beep, beep.

Wednesday, July 16, 2008

Untitled

You would not think, when you learn how my day began, that this would have been one of the best days in a long time. But it was. Even though it began with getting a tiny, sharp splinter deep under my fingernail, and getting a rejection from the New York Times, and also an idiotic letter from a would-be employer, this has got to be one of my most golden of days.

I’ll start small: the weather is a perfect 10. Hot, but not humid, sunny, all is green and blue. I swam in a pool with my friend, and afterward Ned grilled a perfect set of steaks, which we ate with Caprese salad, corn, and wine. My porch is all buttery yellow and aqua. It feels like a summer cookout, sitting on those thick sunny cushions.

And, as they say at the Passover seder, that would have been enough: Dayenu.

Also, my editor is going ahead with my revamped proposal, so it looks like I’ll be able to finally start writing that second autism book in the fall, once the contract is underway, which should happen in August.

Dayenu.

Finally: our meeting with Nat’s school was fantastic. Here’s what happened. Ned and I set out early for the meeting, figuring we would drive by what we thought was his future residence (we had the street name, but no house number). We got to the street and we saw a tall young man walking out the door to a house, and get into a van. “I think that’s it,” Ned said. “It looks like the one we saw when we were first checking out the Residential program.” But we didn’t know for sure.

I saw that the guy was backing out of the driveway, about to back into a plastic garbage can. He hit the can, and as he got out of his car, I took my opportunity. “Is this the ___ House?” I asked. He looked at me for a moment. “This is ____ Road…” If it was the house, he was not allowed to tell me. But I was not going to give up. “I’m looking for the ___ Institute House.”

He broke into a smile. “You must be Nat’s mom,” he said. We shook hands. He is the head teacher at the house. I liked him right away: he had a lot of spark and spunk. “He’s going to love it here,” he said.

We all got back into our cars and drove to the meeting. There were about 10 people around the table. I produced a list of 11 questions and went down the list. We got everything decided and discussed, such as, when we were going to have dinner with the House, how we would get all Nat’s stuff there, how often could he come home, how frequently could they talk to me (“at least daily,” the head teacher said), what did Nat like to do, to eat, etc. I invited all of them to my party, plus they said they would bring his entire House, with the staff: two vans’ worth of guys, descending upon my quiet, stodgy neighborhood. Cool.

All those people putting their heads together, about my son. My heart was just bursting. I wanted to hug all of them. Finally I said, “I gotta get out of here,” so that I could just go and cry.

I realized, driving home with Ned, that this was really probably maybe going to be great for Nat. A house of young guys, running it and inhabiting it. Guys that know how to work and how to play. Guys who are psyched, stoked, and pumped to have Nat move in with them.

I realized that if Nat was going to actually be happy there, that maybe, just maybe, I could be happy with him being there. I could — let go? Did I just say that?

And now, to come up with a design for Nat’s cake. Dayenu!

Tuesday, July 15, 2008

Yearning for Action

I’ve got to practice what I preach, which is that everyone has a right to the best possible life they can, and I am including myself. I have been working hard to feel good, even while processing this life-changing situation of Nat getting ready to move out. I can’t just wait on the shore and let the wave knock me down.

So tomorrow Ned and I are meeting with the school and residential faculty so that we can get more of our questions answered for Nat’s move. We want to get busy, do things, get this thing off the ground like superstars. This weekend, Ned and I are going to create a series of Tabblos for Nat to hang on his walls, of all of his favorite people and places. I am going to take a look at his new room and decide how to decorate it.

Decorating my children’s rooms has always been my initial way of connecting with their reality. I painted Nat’s nursery while he was a little lima bean sprouting inside me. I picked out the loveliest periwinkle blue and got a Laura Ashley border and a beautiful pastel-colored crib, and we found a dresser on a street and painted the drawers pink and the rest of it white. We did not know we were having a Natty Boy, so we used all pastel colors.

I just finished looking through an early photo album to find a pic of the room, and there were so many amazing Baby Nat photos I haven’t seen in so long. Oh, my aching heart.

So tonight I’m choreographing the most a propos of songs: Raul Ferrando’s “Yearning.” So lovely, haunting, sad, determined. I think I will begin on the floor, on my knees, one arm extended, moving with the strings. It will be a veil piece, because of its dramatic flourishes. I just practiced it while the boys finished dinner. Ben asked, “Why are you on the floor?”

Why not? Doesn’t he know his crazy mother by now?

No Break, Make Boxes

I found this lovely email in my inbox this morning, from Nat’s teacher, about his first day of work at a local restaurant:

Hi Sue,
I just wanted to let you know how Nat’s first day went. I was able to go with the job coach and see how he did (I tucked myself away in a corner so I cold see Nat and the job coach but they couldn’t see me). He did AMAZING!!!!! The job coach had him change into his new [restaurant] shirt and visor at school and we made our way to the restaurant. When we got there, there were three other people getting the restaurant ready for the day. Nat shook hands with all of them and introduced himself. Joe (the job coach) showed him where everything was kept and they brought everything he would need to assemble out into the main dinning room. The original plan was to only go for twenty minutes or so to just show him around, introduce him to the staff members, and show him the different assemblies. Well, Nat was so great that we stayed for a full hour. The job coached asked him a couple of times if he would like a break and he said “no break, make boxes”. Nat got to pick out a soda at the end of the shift (he chose orange soda) and we made our way back to school. After we came back Joe commented to me how calm he was and that he seemed very happy because he kept whispering and smiling. – Therese

If only all people (Therese, Joe, Nat) were as dedicated to their jobs…

Sunday, July 13, 2008

A Day at the Beach

Yesterday was a gorgeous Saturday. I just had to get out of here, so I told Ned I was going to the Cape just for the day. He had plans anyway, so it was fine with him. Of course Max and Ben didn’t want to go, because “we were just there,” as if that has any relevance! But I knew Nat would want to go, and so I went with just him.

A new thing for me: the talk-free car ride! Nat is not into talking, but he is very interested in all kinds of music, so I could just blare it and sing and he didn’t mind at all. Occasionally he would stop and stare intently, something which Ned and I once called “Tape record mode,” meaning that Nat was memorizing or perhaps merging with the song.

We didn’t have much traffic and got there in two hours (usually it is an hour and a half, pretty much). My aunt and uncle were there, which was nice, although it’s odd to me that my well-meaning aunt shouts at Nat when she is addressing him, as if he were deaf. I should have said something, but I’m not always up to that sort of diplomacy. Nat probably just thought, “Another Loudie,” and went on his merry way.

And merry it was. I have never seen such Stompies and Happy Slappies. His usual circuit was twice as wide, as if he wanted to include even more gawking beachgoers than ever before. (There actually did not seem to be that many rude starers this time; the Special Olympics tee shirt he wore may have helped in this regard.) His waving arms were like a windmill, and his smile was just huge. I slept on and off, waking every few minutes to check where he was, but he was always nearby, either sucking his thumb with a delicious ardor and staring at the churning water, or (literally) jumping for joy on the wide sandy beach. We went in a couple of times, both of us shuddering as the powerful waves slapped our bellies. Mom and Dad showed up an hour into it, and it was good to have conversational company. Dad threw a ball with Nat and Mom and I caught up on the week.

I cooked us a delicious shrimp scampi, and then Nat and I had a quick, uneventful ride home.

My only regret was not bringing boogie boards, because I was afraid I wouldn’t be able to control Nat by myself in those waves. Plus I was feeling wimpy about the cold water, a balmy 61 degrees.

Saturday, July 12, 2008

The Unexpected Flower

As a gardener I often forget what I’ve planted, and where. It is practically impossible to remember, unless you are meticulous and keep some sort of map of these things. That would imply that 1) I understand maps; and 2) I can draw aerial views of things.

The way I garden is the way I do everything: by feel, by trial-and-error. I do a lot of research during the fallow days of winter, and then, come spring, I plant whatever I want to in a frenzy of color-love, and hope for the best. If a place in my garden is depressingly blank, I stick something there, never realizing that last year’s July-blooming perennial was meant to fulfill the same purpose. Yesterday I noticed, out of the brown, an unfamiliar purple flower unfurling right in the middle of my purple flower area. WTF?? “I have these weird, gorgeous things that look like anemones,” I told Ned, who is utterly clueless about flowers. “When did I plant anemones –” and then, in a flash, I saw my mother handing me a bag of lumpy brown bulbs last spring. “Hey! My mother gave me a bag of anemone bulbs, I think!” Lo and behold: I have a ton of anemones, all of a sudden.

You may not know this, but I am making a party for Nat at the end of the month, two days before he moves out. I am having close family and as many of his friends — social group and school — that I can. Which ain’t many, although he actually has a lot of friends. (It is very tough getting to the kids in his class; his school is very protective of what they call “confidentiality,” to the point of almost paranoia. In their attempts to be all HIPAA about everything, they make it nearly impossible for our kids to have a social life. Ironic, eh? You can’t simply send in a sheaf of invitations and ask the teachers to put them in the backpacks, the way you can in public school. Well, I am going to try to change that somehow, perhaps in one of my manic phases…)

Yesterday I felt impelled to do something about cracking open Nat’s class. I paged through the very thin school contact list which contains the phone numbers of all families who’ve consented to being contacted by other families. (That is, all families who have the energy to fill out the consent form and send it back to the school. I’m convinced that most of the school’s families would love to be contacted by other families.) I seized upon the one other family from Nat’s class and called.

That mom was amazing. She was right where I was, in terms of our sons. Our boys are the same age. They have similar interests and struggles. Similar vocational interests (her son works in the school and outside in the town; Nat just landed a part-time job at a restaurant in the town) and experiences. We had similar fears about Post-22: how do you get them what they need from the state? Compared to state services, the public education years look like a happy fluffy dream come true.

She was so proud of him, just as he was. She was proud about all of his jobs; and so sad about her inability to meet all his needs and challenges. So down-to-earth, so honest. I have not experienced that kind of resonance with another parent in so long, if ever. Both she and I love the school, despite its flaws, and absolutely love the head teacher. And: her son has lived in the Residences, since he was 15. So she could tell me all about what it is like! We talked for a long, long time. I felt like I’d known her forever, when really, I had only just stumbled upon her, a beautiful bright thing in the middle of an otherwise dark day.

Friday, July 11, 2008

Pop – corn

I don’t usually read the Forwarded corny, pop stuff people send me. I prefer to cook up my own. But something about this one made me stop and read. It was not even from a close friend, but someone whom I’ve always liked and admired, and worked with for a time. But getting it from her made me feel really good somehow. What I’ve done is clean up the grammar and the stuff that annoyed me or was unclear, to see if it hangs together for me and my Weltanschauung. I don’t mean to get my sap all over you, but I kind of like it, and I don’t really know why.

People come into your life for a reason, a season or a lifetime. We don’t always know which it is, until much later. Then, hopefully, we feel some peace and understanding about the relationship and its potential purpose.

When someone is in your life for a reason, it is usually to meet some need you have, whether you recognize it or not. They have come to assist you through a difficulty, to provide you with guidance and support, to aid you physically, emotionally or spiritually.

They are there for the reason you need them to be. Then, without any wrongdoing on your part or perhaps inexplicably or at an inconvenient time, the relationship will come to an end. What we must realize is that our need has been met, our desire fulfilled, and their work is done. The prayer you sent up has been answered; but then, it is time to move on.

Some people come into your life for a season, because the time has come to share, grow or learn — somehow — with them. They bring you an experience of peace or make you laugh. They may teach you something you have never done. Or you, them. They usually give you an unbelievable amount of joy. But it lasts only for a season.

Lifetime relationships teach you lifetime lessons, things you must build upon in order to have a solid emotional foundation. Our task is to accept the lesson and put what we have learned to use in all other relationships and areas of our lives. These relationships are with us for the longhaul.

We are lucky to have any of the three, and hopefully we recognize them when they are with us.

Torn

Here is more of the same thing. I am in so much pain about Nat going. I am probably going to run away today, to someplace where I can be soothed.

This is of similar magnitude to the days when he was diagnosed, or perhaps, to the days before he was diagnosed, when there was something I dreaded but couldn’t name, that lay in wait for me. Anticipating his move-out is the same dread, a dread that feels like waiting to vomit.

But this time, it is not about finding out that “something’s wrong” with my child. It turns out nothing’s wrong with my child. I have a name for the challenges he and we face, I have an understanding, somewhat, about how to mitigate them. But as for Nat himself, this is so much about how much I love him, and how much I don’t want him to go. How I can’t imagine living day-to-day without him. Yes, yes, he is going to be “fine;” I do not take that for granted, that is wonderful. Yes, he is going to learn so much and make friends with the guys in his house and have so many more activities than he has here. That is all good. I am lucky. He is lucky. It is a lovely place with lovely people.

But this isn’t about luck, not this bit right now. This is about my pain, a mother’s pain, pure and simple and mixed and complex. I love that guy, even if he rarely speaks to me, even if he has outbursts I can’t understand, even if he makes our lives miserable at times: what kid doesn’t??!! I just love him, and I love his sweet presence, his way of commenting with sing-song talking (I am no longer going to call it “Silly Talk,” that suddenly seems so insulting!). Today I told him I was calling in a prescription to refill some pills and he said/sang, right away, “Huh-pills, hills, huh-peels.” He listens to everything, and if you listen to him, you can detect this.

There is nothing that will take away my pain right now. So many of you have been just so amazingly kind and lovely. So many of you are strangers, yet you offer me these fantastic cyberhugs and love. I am warmed by that, and it helps.

But I have to go through this, like the build-up to childbirth — where the pains get worse and worse until they are just about unbearable. Where there is pain that rips through you, and literally rips you open, blood and screams, so that something utterly important and necessary can happen — this is how I will get to the other side.

Wednesday, July 9, 2008

Funny

Just so you know, it’s not all gloom and doom here in the Senator-Batchelder household. I write about the stuff with Nat because it is how I deal. But sometimes I just have to write about other stuff, like the things that are in my head that make me laugh, or think.

Jim Gaffigan is a fairly new comedian out there, at least he’s new to us. This Manatee bit makes me laugh until I almost choke. Any guy who can channel sea creatures is alright in my book.

And then there’s the Fail Blog. Page after page of “fails.” Fatal typos, weird translations, lapses in judgment. A whole panoply of human error.

And Ben. Yesterday he told me a joke he’d made up: Q: What happened when the ship dropped a bomb into the sea?
A: There was a huge ballast.

Tuesday, July 8, 2008

Ain’t Wasting Time No More

We’ll raise our children in the peaceful way we can,
Its up to you and me brother
To try and try again.
–Allman Joy

It’s not that Nat isn’t ready to go. It’s that I am not ready for him to go. We went from zero to 60, just like that. Yes, last summer was hard, so hard, with all of his outbursts, so inexplicable to us. So much would bother him. Ben was so afraid of him, no matter what I did. If I said too much to explain things to him, it would only serve to invalidate his feelings. I don’t know how much fact sunk in. All I know is how he grew to hate Nat, to hate just about everything in his life, to mistrust us, to withdraw into sarcasm, goth clothing, gaming, cynicism, tears.

I am not blaming Nat. I would never see it that way. I don’t blame autism. That is a condition of nerve cells, like a part of his body; it would be like blaming my own belly for having cellulite, or blaming humidity for causing rain. You can see connections and causes, but you can’t blame. It is apart from him, and yet, deeply connected to him, so how could I blame autism? Autism, to me, is not a capitalized word, like some Being. I blame myself, more than anything, because I do not know what to do to provide balance and safety for all of my children, and that is my primary job as their mother.

Why are we created to fail our kids? Why can’t we figure them out? Why can’t love overpower all the mistakes, all the hurts? We are too complex for our own good. And so it twists and cuts so much to watch the repercussions of our inadequacy.

I realized at some point, in my mind, that Nat had to go. He was old enough and could learn more about how to be with others, from others. I had to focus on Ben — and Max. Ben was crying for help. Max, well, no crying, but — I always worry. Is he quiet and accommodating, like Ned, or is he this way because he had to become this way? He was always this way. But is it okay? Like Ned, he seems happy, but like Ned, I always wonder about someone who handles things so internally, so unlike the way I do.

Sometimes a cigar is just a cigar, and sometimes it is much, much more. Still waters, and all that.

With Nat’s school, we now had a place that I could trust, which is saying a lot. I don’t trust easily. It has taken me years to get to know his school and how they do things. I know their flaws and I know their postive attributes. Teacher after teacher seems to fall in love with him, and why wouldn’t they? He’s bright and beautiful, laughs easily, and he’s so funny.

Oh, God, I am going to start crying again! I was just in his room, straightening for the cleaning women (such a strange thing we do, clean so that they can clean). Looking around at the toys, from 18 years of life, the class photos, the art, just sucked my heart downward. The abortive attempts to teach him this and that: sentence-generation puzzles; construction toys; piggy bank; baby doll; math fact flash cards. The toys he used to like, but that now are dust magnets: Funny Bunny (tattered gray rags shaped vaguely like a rabbit); books on tape; Disney CDs.

Nat, Nat, Nat. Baby pictures of you, preteen, chubby 9 year-old. I know, I know, here come the strains of Sunrise, Sunset. Ned says I am just a big pile of sugar. But I’m just saying: it all happened way too fast.

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