Susan's Blog

Saturday, January 31, 2009

The Most Important Meal of the Day

This is a day of independence,
For all the Munchkins,
And their descendants.
— Mayor of the Munchkin City, In the County of the Land of Oz

Five years ago, I wrote this piece for the New York Times.
Here’s what happened today while I just sat here drinking my coffee, lazing around with Ned:
Nat came downstairs, dressed and ready for his day.
He greeted us, and went to the freezer and pulled out the bagel bag.
He selected a raisin bagel and put it in the microwave for 30 seconds.
Closed and returned the bagel bag to the freezer.
He took out the (pre-split at Finagle-A-Bagel) bagel and put it in the toaster.
When the toaster popped, Nat got out his bagel, and went for a plate in the glass cabinet.
The stack of plates were topped by a colander (different placement than usual) so he closed the cabinet.
Thought for a moment, then opened the plate drawer in the island.
Went for the butter. Upon opening the butter dish, he noticed it was full of pale yellow smears but no butter.
He went back to the fridge with the butter dish in hand.
He stopped and stared at the open fridge.
At this point I had to practically tie myself down to keep from assisting, but I waited, quietly…
He saw more butter in the cheese drawer.
He noticed that these were half-sticks of butter (different) and so he slid them back into the box.
At this point I called out, “Nat, those are okay butter. They’re just smaller.”
But I guess we all know that half-sticks are just not right. Nat put them back. Undaunted, he peered more closely at the cheese drawer and found the box of regular, proper-length butter.
He unwrapped the butter and put it into the dish, and went for a knife.
He buttered his bagel.
He ate it in a flash.
He threw out the remains, put his plate next to the sink, cleaned up the butter dish and was back on his way.
Never give up, never surrender.

Wednesday, January 28, 2009

To Those Out There

Maybe it’s in the way the day went
From promise white, with snow light
At what point? The wet lent trees bent
And gray of ice became gray of night

Or else, perhaps, were thoughts too much?
Though puppies here, my lover near
Even with joy and quiver in his touch
Still an absence, hole of one not here.

And also with me, unknown are those
I’ve only met them on a screen
Their stories shaped their hearts exposed
Their love their pain and all in between.

Is the heart big enough to hold all there?
They say it is, it widens still
Today I feel it stretch, strain, and tear
To nap — for I have had my fill!

Sunday, January 25, 2009

Are You Game?

Take a look at this article. Has there ever been an organization that has grown, evolved, and delivered on its promises the way Special Olympics has? For Nat, who has been a Special Athlete since he was 10, SO has meant a social life, acceptance, teamwork, fun. For us as a family, SO has given us a common bond, a biannual event to share together (basketball State Games in the winter; swimming State Games in the summer). And it has given us a place where Nat’s talents are obvious and admirable. Plus, we have made some very wonderful connections ourselves in the parents. I now know parents with kids Nat’s age from all over the state, and they are beginning to think about housing communities, like I am. It is very possible that we can pool our resources and services from the state and create a housing community for our kids, whom we met through SO.

I think that the skills Nat has learned there are part of what has enabled him to hold down a job and also to go off without us on social excursions. He has learned the value of being with other people (other than us), listening to them, following directions, and making his needs and desires known. Maybe he doesn’t use words, but it does not matter. He understands people and they understand him. What more do you need, truly?

If you live anywhere near Boise, Idaho, get yourself over to the World Games, beginning of February. I may even go, if I can bear a 7 hour flight. You will just be astounded. I think your life will change if you watch the Games. Sit among the families, listen to their conversations. Talk to the volunteers. Meet the athletes. And then write to me about what you have learned, what it made you feel.

If your special needs child has not yet tried SO, I think you should give it a try. If one sport doesn’t work, try a different one. You never know when a whole new passion will be kindled.

Saturday, January 24, 2009

Natty Longlegs

Every Friday we now have a routine. Nat and I drop Ben off at a weekly appointment and then we walk a few blocks to the Starbucks. Don’t think we are walking together; Natty Longlegs moves just below the speed of light and gets there way ahead of me, beautifully stopping at the large intersection of Washington and Beacon and waiting for the Walk sign. Still, I say, “Nat, slow down! We’re supposed to be walking together.” As in-shape as I am, I am no match for him, 19-year-old tall pitcher of water, on his way to get a sweet treat.

He gets to the Starbucks and strides inside like he owns the place. I burst in shortly after, out of breath. Nat walks up to the counter and stares at the cookies behind the glass. The guy who works at that time knows us by now. He is expressionless, half of his face hidden behind a long dark beard and glasses. Nothing fazes this barista. Hey, what’s to be fazed about anyway? With Nat he has one very happy, excited and regular customer.

I whisper to Nat, “Tell the man what you want but say it slowly and loud.”
Right away Nat says, speaking directly to the cookie case, “Chalkitchihcookiesplease!
The man stands there, blinking slowly. I walk over so that I’m standing right in front of him, gently pulling Nat to stand next to me. “Okay, say it again, Nat.”
“ChalkitchihcookiesPLEASE.” Always says please.
The guy goes and gets the cookie.
“Oh, and a small breve misto for me,” I add.

Nat gets his cookie and gets a table right in the middle of the Starbux laptop scene. All these people working alone with their computers and their long-empty cups of coffee or tea. Nat plunks down, throws off his coat, and starts eating and whispering to himself. Occasionally he looks at me, a long look, which makes me feel happy. Because it is winter, he is snorting back his runny nose every few moments. Our neighbors are working away; after the initial startled glance at this very animated young man, they go back to work, keeping their thoughts (if they have any) well-hidden.

As soon as Nat is finished, he jumps up. He throws his bag away, and comes back to my table, standing over me, looking at me. “Nat, wait for me. Sit down.” He sits, but he doesn’t like it.

I decide to take the remainder of my coffee with me; it is close to the time when we have to get Ben anyway. I recap it and say, “Okay, let’s go,” releasing Nat back into the cold and now dark city sidewalk. And he’s off.

Friday, January 23, 2009

Not Afraid

As God is my witness, I’ll never go quietly…
–Scarlett and me

I went to a meeting last night. One of those information-filled evenings for parents, the subject being “Understanding the Disability Housing Maze” or something like that. It was presented by Combined Jewish Philanthropies (CJP), my new heroes. CJP has given tons of money in Massachusetts to help set up homes for disabled people, really nice ones.

The problem, of course, is the state bureaucracy and really, at the very bottom, the lack of money in this country for the disabled adults. The waiting list for housing vouchers is 7 years. And that’s if you are savvy enough to apply for your kid in time! I am going to apply for Nat on Monday. So much to do. Thirty applications for this and that.

But I am going to do, Goddammit. No more sinking down, no more fear. Bureaucracy, Shmureaucracy.

There are all sorts of things I need to learn, and last night I started the process. One huge thing I learned was to stretch my kid as much as possible, building up his independent living skills as much as possible so that he needs less from the state. Stretch your kid. It gave me a sense of power and strength, not a feeling of depression. I am going to push my Nat and believe in him, and be strong and get him a full life. I look at his joyful face as he has just finished his sing-along (“I Love To Laugh;” how apt for him). He deserves the sun and the moon, in my book. I am at least going to get him a job coach and happy place to live.

Thursday, January 22, 2009

Living in a Fascitis State

I don’t know whether to rant-or
to cry about my fascitis o’ plantar
Though fascitis sounds like a dictator state
It’s nothing more than my arch is too straight
First time anything on me was considered too flat
But there it is, my feets is all that
The good news is I can still exercise
The bad news is I can still exercise
Plus — I gotta wear a strap-on (splint) to bed
(Oh, get that filthy thought outta yer head!)

Putting the Progress in Progressive

This was my article for today’s Tab. I have been harboring a feeling of love for my town lately, even more than usual, because truly it is one of the best places on earth, even with its Boston-bred arrogance and insufferable need for “process.” And now, there is the new four-way stop on my corner, which has done wonders in terms of getting Ben and Max to school daily. Now those show-offs on the main road have to stop for us second-class side street citizens. I feel smug every single time I make one of those High Street drivers stop and wait for me to go.

And, of course, even better: Quest, the people behind Nat’s social group. I am eternally grateful to their drive, creativity, and ability to connect with organizations like our town’s Parks and Rec, and with the local Special Olympics, as well as Alternative Leisure Company. They are ordinary parents doing an extraordinary job.

Wednesday, January 21, 2009

Melts in Your Mouth

I really like what Sue said to me in the comments of the previous post. It really is so true that we take for granted the things that we have. She said, “I’m just glad to be standing up and breathing.” Somehow, that statement made me feel really happy.

I went out with an old friend tonight for dinner. She was the first person I befriended whose kid was on the Spectrum, so we have been friends for about fifteen years. I took her out for her birthday. We talked about our bodies, and what’s going on, (and laughed a lot), and I had that Sue’s words in my head. I thought, “I am almost 50, God dammit! It is crazy, simply crazy, to put all this energy into face or body. Things really start to fall apart in a serious way sooner or later and we have to focus on what makes us happy.

So here’s what makes me happy today: I finished my first draft of Book II. I put in the last of my interviews, and I like the Epilogue. Jeez.

Another thing: In my bellydance class today, two different women said to me, “You’re really good! I could follow what you were doing just as much as the teacher!” NO ONE has ever told me that, in these 3 years of studying BD. Yow.

And yet another: I got this funny thing in the mail today from my sister: two bags of customized M&Ms;, printed with the words, “i 8 the outside,” and “u 8 the inside.” Maybe I never blogged this (can it be so?) but when we were little, Laura used to suck on the outside of an M&M; and eat the colored shell, and give me the insides, which were warm and soft (which actually brings out the sweetness of the chocolate even more). Shut up, this is what sisters do. I’m so glad I have a sister who knows me so well, and who still makes me laugh.

A good day. Dumb blog post, good day.

Tuesday, January 20, 2009

46 is the old 40

Age, alas, as all wol envenyme, hath me bereft my beaute and my pith.
–Chaucer, “Wyf of Bath” [this is how I remember it from freshman year of college. Didn’t bother to google it; in too much of a hurry to get this screed out.]

Aging is a scary thing. As I said the other day, I suddenly am the mother of a 19-year-old and an almost 17-year-old. And Baby Benji is going to be 11!!! Oh, Little B!!! Where did the time go? I was 35, I blinked, and now I’m 46. Fabulous at forty, right. That worked when I had just turned 40, and 40 was the new 30. But 46? 46 is the old 40.

I don’t know how to feel good about it. “Better than the alternative,” my mother would say. Aging is happening to me, but I don’t know how to handle it. I feel like I notice tiny things changing, and it does not fill me with pride for all the life I’ve lived. Instead, it feels like a loss and like something I want to cling to.

We all have such contempt for the women who go for all the nips, tucks, injections, etc. But I think it is a double-edged sword, or scalpel. People also have contempt for old women. “She’s so old!” someone will say when you see a kind of regular anchorwoman on the news, rather than a twenty-five-year-old recent communication major. Or when you see someone fat. “How can they look that way?” And there are fat-losing contests in just about every magazine, and on reality tv. Scores of newspaper stories about obesity, how fat we all are. Fat seems to be synonymous with Bad, and Old is synonymous with Ick. None of us like that fact, but why does it keep up? Even More Magazine, the glossy fashion magazine for women over 40, only speaks to women up to around 70. Ever see the magazines that boast, “Look good at any age!” And they only cover your twenties through your fifties or sixties. After that you are irrelevant, or too tired or ill to care? I doubt it!

When I am an old woman I shall wear purple — purple eye shadow, that is. If it is in.

Where do you draw the line in terms of self-improvement, in terms of trying to stay young? If you are not afraid of surgery, then are you so much worse a person than the one who dyes her hair? How about people who straighten their teeth? What are the rules on being “natural?”

We are told we should love ourselves, but so often the first thing out of a woman’s mouth, when talking to a girlfriend, is an unhappy statement about her looks; at least this is what I find among my friends. Are we shallow because we talk about these things? My friends? Are you kidding?

I have a friend who wrote a funny and informative book about all the things women do in the pursuit of youth. She actually went about trying products, interviewing consumers and those in the cosmetics industry to find out what “worked,” and to get to the bottom of what is really going on with women of a certain age. She had a theory that depending on what your circle does, you will feel pressure to keep up with the Joans’es. If one in your group all of a sudden starts getting Botox and Restylane, then the rest of you won’t look as smooth-faced. And if all do it but you, you will stand out. No one will mind, of course, but you might notice it and mind.

I hate the way I sound here. Anyone else going through this? My sister injured her hip the other day and nearly called off our weekend together (this Saturday) in New York! Laura, my sprightly slightly older sis! Hip injury, I ask you! And I said, “Oh, we really have to talk.” The whole leading-up-to-menopause, the losses, the losses!! Except around the waistline! Suddenly it is tremendously difficult to budge a pound! And when I complain to Ned, he says, “You know how beautiful you thought you were when you were 43? Well, when you’re 53 you’re going to look at you now at 46 and say, “Oh, I wish I looked like that now!”

(Yes, Ned is a Prince. He is indeed. That’s all there is to it. But still, he doesn’t know what he’s talking about.)

He tries so hard to get through but he can’t. Deaf ears. I am panicking about the changes, I’m embarrassed about my vanity, but there it is.

In the end, obviously the best thing is to be happy with who you are. It was a lot easier when I had no wrinkles. Hey, at least I’m still younger than the president!

Monday, January 19, 2009

It Don’t Come Easy

I am amazed by how true is the cliche that time heals all. It is interesting that our emotions either grow numb, scarred, or perhaps they deepen with time. Pain is difficult to recall, unless you find triggers that lead you right back into the space in your brain where the memory resides. We can’t remember the pain of childbirth, for example, but if you watch someone else giving birth — the pushing, the screaming, the panting, the thrashing — it can flood back to you pretty strong.

When I first began writing Making Peace With Autism, I knew that what I would have to do is go back. I would have to find ways to transport myself into the pain of Nat’s early days, when I didn’t know what he was all about. I pulled out old journals that I had kept, which oddly did not talk too explicitly about what Nat was and was not doing, but rather they contained the raw pain I was feeling in those days (when I was 27 and 28). (My emotional stew back then was centered around my need to become an adult, to become independent from my parents, believe it or not. I think I was delayed in that area, and it was not until I had my first child that I had to deal with breaking away and growing up. This dealing took on some very ugly guises and forms: horrible fights, horrible OCD, depression, fear. It’s a wonder my parents still speak to me, and it’s a tribute to the strength of our love that we are as close as we are. I guess maybe they knew somewhere inside what was going on with me and they just withstood it until it passed. And, I think they grew with me, too.) I think the reality of Nat helped us all grow much larger and wiser. At any rate, those journals transported me to my past frame of mind and heart, so that the pain memory helped open up the Nat memories, which I could then access and write down. But that was so hard, and it made me see that I was no longer in that place.

Anyway, I am learning that when change is upon me, like moving from being childless to being mother, I freak the hell out. I take my pain out on everyone around me, and on myself. I am caught inside it like a caged animal, unseeing and utterly confused. And so, I think that another reason it has been so hard to let Nat go live at The House is what it means about me.

If Nat is now at a phase where he can live somewhere else, among others, and go out on weekends with 10 friends and two chaperones, then that means that Nat is pretty much a grown-up. How did that happen? How did that boy become a man? Suddenly one of my children no longer lives with me, and that stark reality hits me in the face. If Nat is old enough to live in a group home, hang out with guys his age most of the time, food shop, do household chores (laundry, vacuuming, meal prep), and come and go here easily, that might just mean that Nat is pretty much an adult.

I have a child who is now an adult. He is not a child. I am not a young mother. I am old enough to have a kid who is an adult.

That is something that has really been bothering me, all these months. How can I be that old? I search the mirror to understand. I see small changes that I don’t like there. All of that.

I realize that I am in a new phase of life, just as Nat is. Aging has been thrust upon me, just as motherhood once was. And that is not easy.

Sunday, January 18, 2009

Why Not Have a Cow?

The arrest of an 8-year-old Asperger’s girl in Idaho has brought back raw memories of what happened to Nat when he was 8. He was not arrested for his outbursts, thank God, but he was expelled. That school refused to put in any of the supports that our behaviorist recommended, even when our town was willing to pay for the additional staff (this was an out-of-district placement). The dialog around what was happening with Nat in that school program over the course of that year was similar to what I read in the story about Evelyn. In the ABCNews report, the school officials talk about Evelyn — who had an aggressive outburst as a result of being kept from a class party — as if she were an inexplicable creature, an oddity; someone to be tolerated at best, and ostracized (and arrested) at worst. Apparently she did not get to go to the party because she refused to take off her beloved cow costume.

Yes, yes, of course I don’t know all of the facts, but I’m going to jump right in anyway. I read the news story twice to try and piece together the scenario. In trying to be fair, I wondered about the insistence to remove the costume. The teachers were probably always trying to get her to act more “age-appropriate,” (note the use of quotes; I don’t really go in for age-appropriate so much myself or believe it should be insisted upon for any kids) and most likely they focused on motivating her to wear other things and fit in. Perhaps they used the party as a motivator, but phrased it all in such a way that they shot themselves in the foot, e.g., “You can’t go to the party unless you are dressed appropriately (no cow costume).”

Fitting in is overrated. Being indistinguishable from the “typical” kids — what a lousy aspiration, yet that is so often the goal. I suppose, to some degree, we all have to learn this, but perhaps a child with difficulty understanding social mores can be given some kind of break, especially at age 8? I’d even like such dispensation for the 19-year-olds, but…

But there were also references to “escalation.” I have learned to beware of the Autism Escalator. As soon as a school system starts seeing Nat in terms of behaviors “escalating over time,” there is possibly trouble brewing. What I learned at that particular “special needs” program is that they probably had marked Nat as trouble even before the first day. It was, therefore, a self-fulfilling prophecy. You expect the worst, you get the worst. And once trouble did indeed start, the teachers were mostly reactive and afraid — and angry. I tried to point this out, by asking how the different staff treated Nat, felt about Nat, but of course I learned nothing. Anyway, “someone like Nat” could never be expected to pick up on all that, right?

Right? Of course wrong. Nat knows how people feel about him, he just doesn’t know how to show what he knows. He appears stoic, but I don’t know if that appearance matches what he feels inside.

Like a child about to get on an escalator for the first time, I started to panic when I got word from Nat’s school, eleven years ago, that his “inexplicable” aggressive behavior was escalating. The staff also referred to the many things Nat did to them, (like Evelyn’s teachers) in ways that you could just smell how personally they were taking it. How Nat had “lunged” at the teacher who was pregnant, for example. I’ll never forget that one. Did they really think that an 8-year-old kid would realize that she was carrying a delicate fetus in there, or what hitting her belly meant? He probably sensed her own sense of fragility, her skittishness. And, there was no thought about what that teacher was like to Nat, what vibe she might have been giving off. He used to laugh whenever Max cried. Was he a sadist? No, he was probably stimulated by the strong emotion he was witnessing. He was probably confused. He might also have been psyched, being a sibling. I don’t know.

No attention paid to the relationships Nat had with those teachers, how one or the other may have treated him with fear or distance. No, his behavior was always, “out of the blue.”

Relationships are symbiotic. They are two-way, enmeshed, and messily interdependent. If you don’t know that, you will have trouble fully understanding what happens to you (and the other) in a given relationship. You will have difficulty owning what pieces are yours, how your behavior affects the other person. But such understanding is key for the relationship to grow and be healthy. This is true for our relationships with our children, and it is true for the teacher-student relationship.

If the Idaho school teachers merely viewed Evelyn’s behavior at a distance, or worse, at a frightened distance, and never figured out how to connect with her (using her interests and building a bond), then no wonder things escalated over time. Barring her from a party, keeping her in a separate room because of her outfit — or because they were afraid of her/repelled by her on some level — is just a sign that there were deeper problems there. Not enough teacher-training, for one thing.

The staff at that school would do well to take a good hard look at themselves and their behavior (not just around the party, but all year) to really understand what was happening between them and Evelyn. Why was it so important to them for her not to be a cow?

Saturday, January 17, 2009

My Other Teenager

(I filmed this to send to my parents. See how I have to prompt him, just like with the other two boys. Sons!) Ben’s is equally delicious, but he does not want me to post it publicly. See? I respect my boys’ wishes… right? right?

Fleeing Beauty

A happy moment caught just now (Sat. morning) on camera. We’re just being silly.

Friday, January 16, 2009

Hang Me For A Lion

Can the lion lay down with the lamb? Call me a Naive Pollyanna, but I do believe that most parents in this life want everything good for their kids. The great majority — and I mean all but a (very) small percentage of disturbed people — love their children and want nothing but for their kids to be happy and healthy.

I do not believe that the people practicing “biomedical” interventions for their autistic children are bad parents, not at all. In fact, the particular example I link to is an old and dear friend of mine. I do not believe that, if you feel that autism is heartbreaking and hard and sad that you are a bigot or narrowminded. I believe that these people are more likely than not, devoting their lives to helping their children. They may be practicing alternative methods not (yet) backed up by science, but they are trying to help their children live and thrive in a very difficult, demanding world.

But likewise, I do not believe that if you accept your child as he is and only seek to create greater awareness in the world at large, about acceptance and empowerment of autistic people, that you are neglecting your child’s growth and development. That if you decry unproven science, and that you seek to protect your child from any possible harm from potentially harmful practices and therapies, that you are sick and trying to keep your child disabled. The example I have linked to here is also someone I love (from across the world) and respect.

Most parents are only thinking of their children. I have interviewed so many for my book at this point. Not just people who are Neurodiversists. I have also interviewed Biomedicalists (these are my own awkward terms). I have tried to straddle all the different worlds because in the end there is just the one world: love for your child.

Of course there are crazies and exceptions. But I believe that the majority of us want what we believe is best for our kids, first and foremost. We are programmed that way (see Theory of Evolution).

I think that the angry in-fighting has to stop and we all have to make room for many different minds and stop all the hatred of the Other Side. Because the other side is most likely just another parent who loves her kid as much as you love yours.

Wednesday, January 14, 2009

Swee Mail

Dear Mom
How are you?
I am good.
I had music this morning.
I played a violin.

From: “”
To: natb
Sent: Tuesday, January 13, 2009 11:37:06 AM
Subject: Re: Re: Re: Re:

Hi Nat,
I went to work today, teaching at a school.
I am eating lunch now and wishing I could see you.

Everyday this week I have been getting an email from Nat. They are very formulaic, like his phone conversations. I always wonder if the content is controlled by his teachers, and how much is generated from him. They tell me that they prompt him with ideas of what to talk about, and he generates the sentences, and then they correct his spelling.

I am on Facebook and the little chat box pops up frequently, giving me a dose of these tiny little conversations, that sometimes remind me of Nat’s emails. Yesterday when I read his Swee’Mail I thought of I.M. and FB chatting, and I wondered what Nat would think of this. I think maybe he’d like it, because it would be instant response rather than delayed as the email is. I don’t even know if he reads the email I send back, and if he does, does it make any sense, without a visual or a context?

I.M. or Facebook would have my face — well it would have my rose icon, but maybe Ned could change it into my face. With his teacher looking over his shoulder, he could read it and she could repeat and explain, and maybe — ? Would it be interesting to him? Would he feel like, “Oh, that’s why people talk to each other, it is fun, it feels good!” Or would he feel like, “more talking.”

I want to try it, but I don’t know what to expect, and I’m probably expecting a real real lot.

Tuesday, January 13, 2009

Me and We

Argh, things are going well, but every time I think of Nat I get stuck. I think he went back too soon this past weekend. It is hard to get it right, the back-and-forth. He was willing enough to go, but I just missed him immediately. No tears, just a stinging heart.

The more fun we have as a unit of four the more stark is my surprise. It is as if sometimes I exist on two planes: the me that misses Nat terribly, and notices all the empty spaces where he should be, like the non-uploaded people that float around Facebook. The me that doubts, questions, and worries. And then there is the me that is — I hate writing this — moving forward.

How can I move forward? What does that mean for Nat? Who is his champion, if I am not always here for him during the week, and all he has is his phone calls to me?

That is the Grasping Me. It is quieting down, though. I see that there are so many others who really care about him, who monitor his progress, his health, his mood. Some at the House seem even to love him already (how can they not?)

The forward-moving me has enough energy and time and freedom to work, write, play, etc. That me could go out into the snow on Sunday with Ned Max and B and just sled and sled until our wet toes and butts were just too painful. See, going out into the snow used to upset Nat — about half the time. It was hard to predict, and that is why I would always feel anxious. It’s like the reverse of the rat with the pellet: if only every so often you are rewarded with an outburst, you are always afraid of an outburst.

So to go out into the snow without a thought, and not only that, to defer lunch…! Wonderful. The thought flashes through my body like a small electrical shock: because Nat is not here. Just Max and Ben, big and small puppies rolling in the snow. The four of us, a neat unit coalescing easily.

Except, of course, that also feels terrible and disloyal. Nat was not with us, so it was easy. Of course it was easy. But that’s what makes it so hard. That, to me, is one of the worst things I have learned lately, the cruel fact that you can love someone and then to find that it is easier not to live with them.

We have re-formed, into new parts. The trick is, for us, to keep ourselves soft and flexible enough to let Nat in and out. We all have to be his champion. I need their help, I need them to remember and to feel Nat’s absence. The me is actually a we.

Saturday, January 10, 2009

Real Love

I had just finished reading the poem
about love and the stars and the wine
beautiful love-like
I turned to you to say
“I don’t get it” (as always)
We smirked
Then you looked at me
Serious, important, startling blue eyes
And you said, “I was thinking,
About your washer fluid.”

Friday, January 9, 2009

Classy Clown

Did it start way back when his little big said, “Into Mischief?” Is it a self-fulfilling prophecy? This was one of the first phrases Nat learned: “Mischief!” he would say with a devilish grin.

Then there was the time when he was learning to spell. He would say, “O-R-A-N-G-E spells ‘orange!'” and things like that. So one day, he was in a different aisle of the hardware store from Max and me. We could hear him spelling with a frenzy. Suddenly we heard: “P-F-G-A-W-V-I-X-S-O-N spells: BM!”

Then, recently there was the “ready, set, go!” that Nat did in gym a few weeks ago, where he tricked a classmate into going before the gym teacher said, “Go.”

And today: Nat had to put his shoes back on, after the nurse had checked his infected blister. Nat’s teacher bent down to tie the laces, asking, “Do you want me to tie your shoes? Can you tie them yourself?”

Nat answered, “No tie your shoes.”

Terese began to tie them for him, thinking he meant that he could not tie them. He then moved his foot away and tied his shoe himself.

Terese said, laughing, “Nat, you lied to me! You said you couldn’t tie your shoes!”

Nat just smiled that mischievous grin. And a Class Clown is born. Or always was.

Don’t Borrow Trouble

I really think it’s okay not to deal with something until you are ready to. If it is not time to hear about that thing, then don’t.

I’m going to a Parent Advisory Board meeting at Nat’s school at the end of the month, for the first time in years. I was thinking about how maybe six years ago I attended a Parent Advisory Board meeting at Nat’s school, where I got an earful of stuff I was not ready to hear. I had gone to see what I could do about helping raise money for the school with an eye towards improving conditions for the teachers. At the time I was incensed about how fast the turnover was there; Nat would get a new teacher every 6 months, it seemed. This was the worst possible situation for Nat, who really likes stability, for the most part. My idea was to encourage the teachers there to unionize so that they could demand better pay. Coming from a family where my grandfathers were socialists and union organizers, and my parents were in teachers’ unions, I had always heard about the good side of unions, how they improve the conditions of the workers. I believed in unions and I still do. (This caused a very weird situation for me when I was suddenly Management, on the School Committee!)

Needless to say, my union ideas made most of the people at the meeting go blank. The fundraising they wanted to do was much more benign: to sell Yankee candles and give them to the teachers for a coffeemaker, that kind of thing. So be it. I dropped my pinko ways and focused on Nat again.

One thing that I heard there was about the residential conditions at the school. Wow, I did not want to hear that stuff. All I could think was, “Thank God Nat is living with me.” It’s not that I heard anything bad, only stuff like rapid staff turnover, too many staff people going in and out of the Houses, etc. But to me Going Residential was such a terrible step, I could not even bear to hear about kids who had. I could not imagine how parents made such a decision.

Well, now I am one of them. It happens. You get to a point where you can deal with the scary future because suddenly the scary future is NOW. And it now has a context. Like Nat, I need a context to fully understand something; I can’t just listen to random facts.

But when you are ready, you will know. Or you become ready, and you stand strong and you take it. Because you have to. Because you can. As my mother would say, “don’t borrow trouble, it will find you soon enough.”

Thursday, January 8, 2009

Is It Write?

I have been writing all afternoon, and so now it’s time to take a break and — write! But blogging is not like writing writing; blogging is just my head melding with my fingers, keyboard, and screen. There hasn’t been a post in a few days (I don’t count the Today Show and the No Show, nor do I count the Tabblos), so a lot has been stewing. This thought-meat is now so soft and tender a for could go right through it.

I’ve been thinking about whether it is right to write about one’s kids. Some readers have been commenting to me about those who are trying to profit from their kids in one way another. I want to address that from my own perspective.

First of all, there’s the rights of the kids. With some kids, you can ask them, or you can get a sense as to whether they mind being exposed to the public. Max says he doesn’t care; Ben does. So I am very, very careful with what I say about them. But I still do say things about them. I believe that as their mother and as a sensitive, intuitive person, they can trust me to do justice by them in my writing.

Many readers probably think I don’t give Nat the same consideration. Oh, but I do. I don’t know what Nat knows, and I try to guess what would bother him, were he to be able to understand my blog. I believe that he does not understand my level of writing. His conversation and reading comprehension demonstrate significant delays. Therefore I don’t think that what I write would upset him; still, I am very very careful.

I am the kind of parent who believes in disclosure. If Nat could understand what it meant that he was autistic, I would tell him he was autistic and we would then have some kind of conversation about it. But so far, all I have managed to convey to him is that Nat does this or that differently from his brothers, or that Nat is doing a good job learning how to talk, how to help with chores, etc. I just have a certainty that he can’t understand any deeper than that. He does not seem to be a wonderer. He seems, rather, to live in the moment, making himself happy with playing around with words and moving his body in certain ways.

I believe, in the end, that it is okay, and in fact, it is good, to write publicly about my perceptions and questions, fears and hopes because I hear from others and I then make sense of life. Sometimes, though, it is just about articulating my thoughts in print. I press “publish,” when I feel secure in what I’ve written. If I find myself thinking, “Why the hell should I tell them that?” then the post becomes just a draft.

Items that I believe would embarrass or upset my children do not get expressed here. But problems and questions do. When you ask a question, you are not violating anything; you are asking. You have not concluded anything.

I also write things to help others, so they can learn from my struggles and my mistakes and my revelations. I make judgment calls about some issues. There is very little written, for example, about how to help your child be appropriate and safe with his/her body. So in my book I did write about our experiences with Nat’s development and the problem of privacy. That was a decision Ned and I carefully considered. I tried to write sensitively and appropriately, but I felt that to write about it would help others. And I was right. Tons of people have come up to me after talks and thanked me for writing about this; dads especially. It is so important to know we are not alone in our challenges, and how to balance our love for our children with the need to make them stand on their own and take care of themselves.

I also write to make the non-autism community understand. I write to make the world a better place for Nat and for people like Nat.

I also write for myself, for selfish reasons. I do indeed get a lot of pleasure over the fact that I wrote and published a book, have another on the way, that I get to express my views and experiences on national TV a few times, that I got to go to the White House and talk to powerful people about my concerns. I got to give my book to the First Lady. That was really fun and satisfying. I felt like I was doing my best as a person to improve life. So in that way, I do get some personal joy out of writing about Nat and my experiences. I wouldn’t write and speak, etc., if it was not fulfilling to me. And yes, I have made a career out of it, and I don’t see anything wrong with it; I see a lot right with it.

I don’t know what people like Jenny McArthy think about, or what motivates her, but I guess I believe that even she, a beautiful woman who has tons of money and fame, is not writing and speaking about her son for self-aggrandizement. I think she is trying, in her own way, to get the word out. I don’t agree with a lot of what she thinks. Her word may not be helpful to many of us, and downright angering and depressing to some, but I think her motives are good. I believe she loves her son.

Maybe I’m all wrong. I’m sure you’ll tell me what you think!

Older Posts »