Susan Senator

So I was talking about my laissez faire thing in the previous blog post. Actually the reason I started writing about that was Max. But suddenly the Natlove came pouring out of my fingers, so I had to let it run.

But the Maxielove. Well, that is just as powerful and just as unknown a subject. Strange how so many of us think of autistics as “mysteries” but when you think about your teenagers, any teenagers, there is a lot of mystery there, too. Max just smiles at me and his eyes are the same as his baby eyes, but there is this all-knowing, all-accepting expression. There always has been. He is an old soul. Even when he was a toddler, when one of his little friends would take a toy from him, he would turn to me with that same expression, that asked, “Why do they do that?” but also, “Oh well, it’s just a toy. Don’t worry, Mommy.”

How I worried about him! Would he ever assert himself? Was he okay being like this? He was so gentle, so passive. Was he sad on the inside, repressed? Or was he just a totally different kind of being from me?

See what I mean? Mysteries, all of them.

Anyway, Max. So I noticed the other day that he and Hannah were just kind of napping on his bed. Hmm. I let it go, but I told Ned. “The two of them are sleeping!”

So then the next time she was here, it happened again. Curled up together like kittens. So I asked Max, “What’s with the sleeping so much?”

He shrugged and smiled. “I don’t know. It’s so comfortable!”

“But — are you tired? Are you getting enough sleep? You’re probably throwing off your sleep cycle! I should know! I nap every day. But I’m old!”

He just gazed at me. Those eyes.

So then I talked to him about it. “I don’t know, Maxie, I just feel — weird. It’s just — if I were to ask any of my adult friends about it, they’d all kind of be — hmmmmm. It’s hard to understand why you’re just kind of sleeping like that. I know there’s no real harm in it, I just — I don’t know.” I kept faltering like that, trying to figure out what I meant, while he just listened.

The next day he said, out of the blue, “So does it really bother you, the napping?”

I tried again to explain it.

Then he came home without Hannah yesterday. “Hey,” I said. “Did she not come over because of the napping thing, what I said?”

Max shrugged, smiled. “Kind of.”

“Ohhh!”

Still smiling, he said, “She’ll be back. You know Hannah.” Despite all of the uncertainty I was feeling, there was this well of pride I felt for this boy, who could be so gently certain of himself and of his loved ones. So sure that life was okay, nothing to worry about, just like when he was a baby.

And then a picture of Linus flashed into my head. Linus, with his blue blankie, had always reminded me of Maxie. Then I remembered: Linus used to pat birds on the head. He and the birds were so happy with it, too. Then one day, Lucy yelled at him for patting the birds. “No one pats birds on the head!” she yelled, shaming him. The last frame is of Linus looking down at the birds and all of them look so sad.

So I called Max while he was walking to school. I told him the Peanuts story. “You know,” I said. “I don’t want to be like Lucy.” He gave that dry laugh. “I mean, there’s nothing really wrong with you guys napping like that. It’s just that — like the bird-patting — it’s not something other kids really do. You know? So tell Hannah.”

“Okay.”

And she came back today.

The older I get, the more I have adopted the policy of live and let live. This modus vivendi does not apply to government or institutions, of course. No, those must act a certain way that is only to the good of all or most. But for loved ones in my life, I see myself increasingly lenient in letting them be who they are.

Is this laissez-faire parenting? I don’t think so. For the simple fact that my children are (knock wood) upstanding young men and a pleasure to be around. If they were brats, then you would have a case.

What do I mean by letting them be who they are? By now my readers are familiar with my view of Nat, and his right to speak in his own language if it makes him happy and helps him express his emotions (without harming anyone). I hate the term I once gave it: Silly talk. That was neurelitist of me, I see now. Of course we all need for our children to be able to communicate as much as possible in the world, and to learn the ways of the world for obvious reasons: self-sufficiency, or survival. Children have to learn to the greatest extent possible, how to live without their parents. And so we urge Nat to speak, to write, to gesture, to express, to type; whatever will help bridge him to us.

I am working so hard these days on ending my habit of patronizing him. The other day, I had a thought that seared me through my heart: what if Nat really can understand all, not some, but all of what is said to him and around him, but that the problem is only that he absolutely cannot speak, find the words and articulate them? Nat’s teacher is convinced that he does; that his receptive language is truly intact, but that is expressive is the problem. He does everything he is asked to do. Everything he learns in school and at work and at play, he does. He seems to really want to be a part of us, when I think about it.

So if he can understand, but cannot speak in turn, how painful must that be to him? Is it? Is he frustrated? But he would show that, right? What does he go around thinking, about me, about us?

So I absolutely have to stop, stop, stop babying him. Just because his words sound innocent and babyish, it does not mean at all that he is on that level. How could I have been so foolish as to not realize that??

Well. I guess laissez-faire can also apply to me.

Separation, moving into a new phase, is the hardest thing some of us do. I think it is very hard for me. I don’t feel that I was truly separated, as an individual in my own right, from my parents until I was in my thirties. I had a lot of fear about being an adult; being responsible for myself. It is no coincidence that my separation happened for good in my thirties, when I was a mother in full swing.

I think of my thirties, the early childhood years of Nat and Max and the early adulthood years of Susan, as predominantly sad and uncertain years. I was kind of lost. I was frantic, doing so much but never really getting it. Gerbil in a wheel. I am sorry, Self, for feeling that way. But then again, why? If sad it is, than sad it was. Sad is a part of things. Who says that it should be happy?

I fault communication and inexperience for that one. We seem to be told that having children will be a happy thing, just like we are told that getting married is a happy thing. And they are happy things, but happy does not look the way we thought it would. Or should I say, “I?” I have no idea if that’s how you thought it would be.

We go into things seeing them only in two dimensions: what we’ve seen from the outside, and what we’ve heard/read. Those are the two dimensions. When we enter into the thing, the big thing like marriage or childbirth/adoption, we then experience the addition of the third dimension. We go deeper. We go through some kind of pocket of time and in-the-moment action, and then suddenly we are on the other side.

I actually felt this when I first ran for School Committee. On Election Day, I woke up very early and I thought, “By the end of this day, I will have won this election and it will be over.” This is because campaigning is very hard. 6 weeks into the election I had an uncontested race, yet because I was new to politics, I had to build a base and campaign just as actively as a contested candidate. I had to go to neighborhood associations and speak; I had to attend School Committee meetings; meet with principals; attend any school functions at the 8 K-8 elementaries and the high school. And so on. So on Election Day, I dressed up very crisp and businesslike, held Benji in my arms most of the day, and handed out my brochures. When it was over, it was over, and I was on the Inside.

So when you go through something as intense as childbirth/adoption and suddenly there is a baby where there wasn’t one before, you are just pulled inside out and a whole new consciousness surrounds you.

Then you get used to it. Then you get good at it. Then you enjoy it. And then they are ready to go. And suddenly, there you are, in two dimensions again, looking outward at their leaving you, not knowing how it will feel, only guessing by what others say/do and what you have heard/read.

You go through it. They go. So tonight, the phone rang and I was napping on the couch so Ned answered it. I heard him talking to Nat. The repeated questions. The same questions answered. The addition of new information, like what we will do this weekend. Then, the good-bye. Lying there listening, I thought, “Our son doesn’t live with us. He calls us.” I sighed, but it didn’t hurt. It was just the way things were now.

Hi All —
I need to interview an autism parent, STAT!! What I need is for you to think about your worst episode, your saddest moment, go deep. I’m going to get all Barbara Walters on you…

And then email me with your phone number so we can talk; only do so if I can use your first name and state/(country if you are not from US) and quote you.

Do not rehearse, do not write down your response. I want this to be fresh and real, not writerly, not edited, not luminous, not heartfelt or poignant. Just Plain You, and Real. But I want to get you thinking, I want to take you back if you dare to go.

I will be back here (after the gym) and ready to talk at 1 p.m. EST. Hope to talk to one of you!!!

Thanks in advance. My readers totally rock!!

–Me

Can you really dye my eyes to match my cossie?
–Dorothy

Not sure what to do for Natty in the coming spring. Swimming starts up on Sunday mornings then and yet social group is still Friday nights, which means he has to come home for the entire weekend in order to do it all. Which means Saturdays he has open and will just lie around, which could lead to anxiety, etc.

I am looking for things for him to do outside of the house. That’s what he loves and that’s what he needs. I hope Alternative Leisure does Saturday trips. I noticed that their Sunday trips are all amazing; one of them is a day of beauty for the ladies! That made me so happy. I always wanted to treat my self especially my genital parts, I can even pay much money for anal bleaching creams and vaginal deodorants just to make me feel not ugly.

So I was thinking… I believe that one of the next frontiers in improving the lives of those with severe disabilities is to remember that the physical appearance, the body itself, is important to us all. I told Tim Shriver, for example, that Special O should offer dance as well as sports. I told him to imagine how bellydance could improve the lives of those with DDs. He listened and tried to understand, God bless him. It’s the next frontier! I believe that appearance and feeling beautiful and yes, sexy, is often neglected in these folks. I am not blaming anyone for that and I know I’m on thin ice here imagining that every woman is as into these things as I am. But who cares it is my fantasy. We do NOT want anyone being unsafe or victimized or made vulnerable. BUT…Feeling beautiful is everyone’s right, so cast your free love spells into the world and flaunt your beauty to the darkness. I’m not saying it’s the only thing but it is one component of the human experience. And I feel like I could be Glinda, pointing the way. [doing my munchkin imitation right now]

For those who do understand what I mean, don’t you think that there should be more of that in the world? Let’s teach the DD girls not only about hygiene and being safe; let’s also teach them about inner and outer beauty and give them ways to express it (safely and appropriately). Bellydance, remember all of you, is not about seduction, though it can be seductive. The intent is not to seduce or any of that, but to assert your absolute physical feminine best in a multi-disciplined dance form and a good exercise as well, while also using good supplements for this, check swolhq to learn more about this online. And sparkly things.

That’s another thing on my list: a bellydance/feeling beautiful kind of class for disabled girls. A gentle guiding hand to looking and feeling your best through fitness, beautiful moves, and colorful outfits.

Call me shallow, but I think I’m onto something.

“Remain calm. All is weeeeellllll!”
–Chip Diller, Animal House

I find that there are many things that people make mysterious that really need not be. I have not only learned this time and again with my boys; I also learned it growing up and later in life, too. In some sense, I think we humans like to make things challenging; on the other hand, some experiences really feel that way, too.

Before I get too chewy in my exegesis about mystery and the human mind, let me give you some examples from my own little fat life (ooops, now I must give you the exegesis of “Little, Fat.” ((can you tell I just learned a new word?! I is a English Professor! )) Anyway… Little, Fat (( also know as “LF”)) applies to any kind of sweet and darling effort made by a baby. It all started with Baby Nat ((who at one point in his life actually was little and fat!)). It evolved into other things that are adorable and poignant in that the effort is being made by someone who previously was not up to the task. It is NOT patronizing!! Well, yes it is. It is patronizing the way parents are allowed to be because they love their children and they feel in their hearts every single effort their kids make.)

Now, where was I? Okay. So in my own LF life, I remember being around 11 years old, and we were in a diner, and we were talking about how we were going to be taking a big summer vacation trip to Maine or something. Something different from the three previous cross-country camping trips we had already taken in other summers. And suddenly my dad said, “Do we really want to do this? Wouldn’t you like to go across the country again? Washington and Oregon?” And Laura and I, without a second’s thought, yelled, “Yeah!!” And just like that, our vacation changed. This may not be how it actually went, but to me it was as simple as doing what you really wanted to do.

So, then there was Nat. And there was so much horror that the media, the DSM, and Bettleheim had packed into the term “autism,” that no wonder I was just in a swirl of terror and confusion. Only to find out, years and years later, that he was, indeed, “Still Our Nat.” Our Little Fat Nat!!

And now, there’s college. All around me in my power town there is panic among the eleventh grade parents. You can feel it in the extra amount of static electricity when you bump into them at the Atrium Mall or Coolidge Corner (oh, just google it). Last night Ned and I attended a Junior Parents College Planning Night at the High School. There we were with all these other parents, some of whom we have known since kindergarten or preschool (Max’s, that is). Lots of waving and kissing. But then, there was the serious moment of getting out your pens and paper and writing down all the minutiae of when to take the SAT, the ACT, the SAT II, the AP, the CRAP.

Questions and questions for the guidance counselor, a very cool dude with a Trinity vest on. (I went to Trinity for one miserable year, but hey, that’s just me. But actually, another thing de-mystified: I hated Trinity, so my Mom said, “So, transfer!” And I did. I found Penn and wrote my admissions essay on the train ride back to Connecticut. You don’t like where you are, leave.) Room full of Panicked Parents, mixed in with Totally-In-The-Know Parents, who made the rest of us even more Panicked.

At the end of the night, Ned and I had a lot of notes and a big packet with a timeline. They should be encouraged to have one club or activity. They should take AP and Honors if they can. They should get recommendations from teachers with whom they had a great relationship. You take the SAT in May and then again in the Fall. You apply to a range of schools, some safety, some a match, some a reach. OmiGod OmiGod!!!! HUGE REVELATIONS!!

Hmmm. Maxie and his Little Fat College Application Process. In the end, Ned said to me, “You know what I learned? We’re okay.”

Here’s a joke that is not even funny:
Why did the B cross the road?
Because his mom works now and cannot take him to drum lesson so he is walking there with two other friends. Crossing Route 9 which is actually an intrastate. It has lights and a crossing guard at 2:20 in our town (when school lets out) but, but but but

B!!!!!!!!!!!!!!!!!!!!!!!!!

I had just decided the other day that perhaps Ben could start to walk home on his own. I told him I would get him a key and a cell phone. The fact that he was not all wowed over the cell told me that he really was ready. But I was just talking about High Street, which is bad enough!

But Route 9?????????

I had bad dreams last night. Up at 4:30 thinking, “How come I can’t let my sons grow the F up? Why does every GD thing about those boys have to be so hard?” (I swear a lot in the wee hours).

Clapton had it wrong. It should have been: “Why does love got to be so hard?” Love is not sad.
But who wants to quote Jay Geils?

Autism Mom: How to take care of yourself, your kids, and (shhh!) even have some fun
By Susan Senator Spring 2010, Trumpeter/Shambhala Publishing

“A happy life consists not in the absence, but in the mastery of hardships.”
–Helen Keller, The Simplest Way to be Happy (1933)

Prologue
Why this book? How do you have any fun?

Chapter 1: How We Think About Our Children’s Autism and How that Affects Our Happiness
Chapter 2: When “Fun” Means Fun With Our Kids
Chapter 3: The Great Therapy Chase: How to Stop and Smell the — whatever
Chapter 4: Happy With Who I Am…?
Chapter 5: Love, Autism Style: Our Marriages and …
Chapter 6: You and Me Against the World: Others Affecting Our Happiness
Chapter 7: Big Passages, Big Changes, and How We Live with Them
Chapter 8: The Negative Perception of Autism and Why it Affects Our Happiness
Chapter 9: Looking Towards the Future: What Do We Need for Happiness?
Epilogue

This was my dorm room at Penn.
Some things never change.

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.

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!

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.

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.

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.

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!)

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.

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.

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!

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.

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?