Susan Senator

The first time we ever gave Nat hot dogs, he was around 8 months old. After eating them, he crawled two quick laps around the kitchen. I remember the fast slap-slap sound of his little fat palms hitting the floor. Ned and I were so impressed by his feat, that we laughed and laughed about it, and we knew that this must mean he loved hot dogs!

The kitchen laps may have also been early stimming, the earliest form of Joyous House Stompies, which is the adult version of Hot Dog Delight. When I realized that, the other day, I had a little shiver, that old familiar, “Huh, little did I know what that sweet little HDD really meant…AUTISM” [cue minor key theme, Beethoven’s 5th or something] I’m such a drama queen! Why does every gorgeous little memory always have to play that particular tape in my head? Who actually gives a shit that this was early stimming? (Well, I do, because it is comforting to connect the dots, to put together images of the Nat I Know with the Baby Nat I Wondered About. But other than that comfort, I have a lot to say about this.)

Yes, it is important to recount those days, those moments, where something profound was happening, where your life changed forever. But it is also important for me to learn how to let that go. It gets to be like a big lump of undissolved sugar at the bottom of my cereal bowl: kind of intriguing and bad-but-good to dive into, but then, totally a downer. If you keep diving into that particular synapse stew, pretty soon that will be the only track your mind can take.

I was watching some of CNN’s Autism: Unraveling the Mystery this morning and I was thinking one thought nearly the entire time: “Can TV ever stop using the cliche of the mystery when it talks about autism?” No, what I was really thinking was for the parents on the show: “Give it time.” I found myself wishing that we could have been on that show — yeah, sure, it was fun being on CNN and the Today Show two years ago with MPWA — but what I really liked about it, was that they used the message of my book, of our family! They did not simply zero in on our grief or our expenses, but they looked at a family being a family, even with great challenge going on at times. (Don’t forget: Just A Family was my title of my book; it was my publisher who changed it to Making Peace With Autism, for better identification as an “autism book.”) For the Today Show segment, we had 15-year-old Nat running at the track, helping me bake cornbread. We had Ben on the computer and Max juggling. We talked about what was hard, and we also talked about how far we’d come — as a family, not as Nat’s Data Takers.

What I want for those young families just getting into the autism game is to understand that growth happens. For all of you. That eventually you will realize that you are a family with concerns other than autism, other than hoping your kid will “catch up” with all the others. There is a certain degree of living in the moment that occurs once you let go of some of that. And it is the living in the moment that gives you your sense of family, of having a life.

As Sigmund Freud may have said(?) “Sometimes a cigar is just a cigar.” And sometimes a hot dog is just a hot dog.

Being a Libra, the scales in the Zodiac, I am supposed to be in balance. Or is it that I seek balance? Or, perhaps I am fascinated by the concept of balance, but I also shy away from it because in balance you cannot have intensity. I need intensity. So, in my life, being in balance, in accord with most things, is extremely elusive. I find that most of the time, I am listing to one side or another, throwing the other things up in the air like a partially vacated see-saw.

Today I was either very active, or with Ned or Nat. I worked out at the gym for an hour: cardio and then resistance, and then at night I danced/drilled for about 40 minutes (still trying to achieve the perfect hip circle, both small interior, and grand. The full hip circle is such a quintessentially bellydance move because it is a sudden level change, but in an unexpected and sensual manner: you bend forward at the waist, straight-kneed, flat-feet, and completely flat-back, and you roll your torso all the way around in the opposite direction from your hips, butt out and in the air, arms crossed over chest. This is a move you would never see in ballet, for example. It is very earthy and womanly, seductive and chaste all at once.).

Because of my craving for worked muscle and stretched sinew, I was largely boy-free. At 11:30 Ned and I brought Nat downtown to see the Harlem Globetrotters, dropping him off with his Northeastern U. buddy and several of his pals from Friday night group. Nat had never been to the Banknorth Garden, Boston’s huge coliseum, and I worried about the newness of the place and the noise. But as soon as Julie came along with that sweet smile, Nat was all a-stimmy with happiness. So we left him there and didn’t see him again until late afternoon.

Ned and I drove from there to Cambridge to a Starbucks and sat in a sunny window and shared a little sweet treat. That was nice, but it also had that slightly illicit feeling, like we had forgotten something or someone or we were playing hooky. That kind of made it even more thrilling. After that we went home and he took Max and Ben to get books and I just worked on the school newsletter for a bit, and then changed into my bellydance gear for my 3:00 class in Cambridge.

It turned out we were bumped from the studio, so class was canceled. I got home just as Nat and Julie did, too. They had had a great time, of course. Nat disappeared to watch a movie and Max, Ben and Nat were upstairs doing something else, not sure what. I was mindlessly surfing around, looking at Bhuz.com and contemplating a lime green cossie. Eventually I needed to nap, which happens from too much Bhuzzing.

So aside from dinner, I don’t feel like I was with the boys much, but instead I was in my head and my body a whole lot. I wish it didn’t have to be that something always seems to lose out, even when I’m happy, but I guess that is what happens with a multi-layered life.

Here is yet another list of no-fail items or activities, things large or small, grand or mundane, that really do what they’re supposed to do every single time.
1) Pancakes for dinner. You can’t do it every day, of course, but once in a while it is just the thing. Especially because Ned does the cooking.
2) Nat going out somewhere with people his age. This causes JHS, or “Joyous House Stompies” in Nat.
3) Workout on a mat in a sunny spot. The sun makes my eyes close, and then I zone/zen out. All that I think about is the music in my head and repeating leg lifts with weights.
4) My black yoga pants with the sequined waistband that I got at the Wellfleet Flea Market. They hit at just the right angle so they are always flattering and they have just a little bit of bling so I’m always a bellydancer when I wear them.
5) 25 calorie Swiss Miss hot cocoa. Tastes a lot better than you might expect, a burst of hot sweetness at the end of the day.
6) My Cape Cod rental. It’s clean, bright, new, tastefully decorated and has a view of the salt marsh.
7) July
8) Joe’s low-carb pita pockets with flax and Smart Balance buttery spread. Can’t explain it.
9) J Crew’s Jackie cardigan. Always fits perfectly, comes in so many delightful colors, not too expensive, year-round fabric.
10) Nap on Ned

We ordered Indian take-out today, because I did not want to cook on a Saturday, and because Max was not home (Max is out at his very first job. He is babysitting for friends of ours, a few blocks away! He called on his way over there to get directions, but I think it was to tell me he was nervous. We are staying home tonight in case he has to call someone.) Max does not do well with other kinds of food (other than what I have been cooking for him his whole life.)

I did not say anything to Nat, about Max or about dinner. I did not have time to tell him about Max. Nat was out all day with one of his buddies, and I was raking, and by the time we all got back together it was too late to think about who needed what kind of warning. Nat loves just about any food put in front of him anyway, except for milk, cheese, and bread (he’s naturally GFCF!). So why not Indian food?

So, the food arrived and I was ravenous. Nat peered into the big paper bag, whispering stuff like, “salt and pepper, juice…” and suddenly started biting his arm, quivering with anger and frustration, the arteries in his neck as thick as fingers. He was jumping up and down, fully gone into an all-out rage.

Was it the Indian food? Ned and I looked at each other in total frustration and disappointment.

I knew there was no point in talking to him about what was wrong; this, by experience, only gets him angrier. I told him quietly to go sit on the couch for two minutes. I set the timer, and tried to go about the business of getting everything out for dinner. Out of the corner of my eye, Ned was watching Nat and Ben ran up the stairs, out of harm’s way. Nat continued to scream, kick the coffee table, and thrash around on the couch.

In those moments, I felt so angry at him. Why, Nat?
And I thought about September, and his moving out. This is why, this is why… I felt relief realizing that this was no longer going to be forever and ever for us. Chased by a twinge of sadness about the way things are.

I had to push the timer several more times, it took him that long to get himself together. I threw together an alternate meal, of turkey sausage and noodles. I called everyone down and we started eating, and the buzzer rang and in came Nat. Ned and I dove into that Indian food, barely stopping to breathe.

Nat ate happily enough. Ben chattered on. Nat even asked for the jasmine rice, and had Chicken Tikka Marsala. After two turkey sausages and a plate of noodles. Learn more here about best sausage!

We all cleared everything away as quickly as we ate it. Ben decided he wanted to try the Muppets in Space movie that Ned’s dad and stepmom bought him for his birthday. Nat agreed to watch with us. He seemed calmer, more his usual wired self rather than flames bursting from his head. As I watched him walk away with his puppet hand going wild, I knew he was happy again. I wanted to reconnect. I wanted to wipe away what had happened. I wanted to try to get him to understand, now that he was calm, that he could tell me next time before he got all mad.

I said, “Nat,” and he stopped and came over to me by the dishwasher. He looked at me expectantly. He knew, though. “I want a hug,” I said. He leaned into me heavily. I kissed his bearded cheek and whispered, “Next time, just tell me, okay? You don’t have to get so mad next time. Tell me what is worrying you.”

Nat said, “Worried about the glasses, the juice, salt and pepper, yes.”

Okay, got it.

So now that I know which song I’m going to do for the June 1st Bellydance Superstars show — “I Put a Spell on You,” Natacha Atlas’ version — I am working obsessively on the choreography. Here is what I believe I will do, and it is somewhat like what I did in the YouTube vid on the previous post:
Intro
1. Drum beginning: hands up over head, interior hip circle
2. Drum: repeat
3. Accent drum: sharp hip bump left, right
4. Drum: hands over head, interior hip circle
5. Strings: snake arms
6. Drum: hands over head, hip bumps
7. Strings: snake arms
8. String theme: medium hip circle and then classic Egyptian walk forwards and back
Song begins
I put a spell on you…: big hip circle walk to left
You better stop…: big hip circle walk to right
I ain’t lyin’: spin
I can’t stand it…: camel around yourself
Put me down…la la la la: full body wave downward, then reverse body wave upward to straighten up
A heartache: (Melina) hands from heart twice, go to one knee (?) Stand up, spin
Instrumental begins
Machine guns drums: flat hip 8’s, hands on hair
Ay-ya-ya-ya, (men’s chorus): 3/4 shimmy walk w/alternating shoulder rolls forward (count 8)
Sqeaky oboes solo: flat hip 8’s again, alternating hands
Wella, wella, wella (men’s chorus): hip click walk
Singing resumes
I put a spell on you: camel walk on toes to left, because you’re mine…then right
You better stop: Maya down with arms, and figure 8 up with arms…I ain’t lyin’
I love you: shimmy arms up and outward, joyously
And I don’t care: shimmy arms down, along bod
Right now: jump shimmy
I put a spell on you: snake arms and medium hip circle
Because you’re mine: deep hip circle, head down, flip hair, cross arms, finish

yay!

His mother saw that he was not lonesome, and because she was an understanding mother, even though she was a cow, she let him just sit there and be happy.
–Munro Leaf, “The Story of Ferdinand”

Sometimes I feel like Ferdinand’s mother. Although my boys don’t prefer to sit under cork trees just smelling the flowers, they certainly do not like to run and butt heads with the other bulls. They do their own thing, and sometimes — like Ferdinand’s mother — I worry about them.

Beastie’s birthday party is a good example. I invited 5 boys for tomorrow, only to find that just two could make it. There was just something about the way that the others were so iffy and vague that made me feel a little clammy claw around my heart, the worry about the social thing. Ned and I I.M’ed about it all afternoon, and we both felt it a little bit. As always, we took turns reassuring each other that it would all be okay. Sure, of course, it is all just coincidence, I have no evidence, but — Oh Beastie!!! Why is it so hard sometimes?

Sometimes I just want to build a huge fortress here and keep them with me forever. Forget the world, forget independent living and ADLs and social skills. Forget vocational training, college, etc. Just stay here and “be my pet,” as my Dad used to say when I was little. I totally understand, Daddy!!

But of course that is not the way of things. We don’t give birth to kids for our amusement — that’s only a fringe benefit. Our reasons are far more primal than that, and also more complex. Our little eggs hatch and become big clunky teenagers and they have got to go. But we fear for them, oh yes we do.

So I moved the blasted party to next Saturday in the hopes that no one would wiggle out of it this time, and I called everyone right away to tell them. I can’t be lazy, which is my natural state in terms of social things. I have to do it for the Beast! I love him so! I want him to have the happiest life.

I want that for all of them. So, just like Ferdinand’s mother, I might let one of them be carted off to the bullfight just to see what they’re made of. But in the end, I think it will have to be okay if they are all frequent visitors of the old cork tree.

Can I make yer garden grow?
–Led Zep

I’m much better today. I am taking action, going to have my situation evaluated, because I think that my mid-life hormones are just tormenting the crap out of me. It’s the Es-Trogen Wars!!

I met with a landscape designer this morning, a very crisp and smart woman. We saw eye-to-eye on so many things. She has a very good sense and knowledge of history, and of architecture, combined with a very Japanese, quiet, calm aesthetic. Rather than doing what everyone else does: holly or box hedge, grass inside, everything squared off, we agreed that the torn-up front yard (remember the sewage pipe debacle?) should have more of a green and stone kind of look, with natural-shaped large pale stones laid out in a curvy pattern, almost like a dried river bed, with evergreens and variegated ground covers edging and clustering, and then the stone pattern bleeds over into the other part of the lawn, which has grass, and fades into a stone path leading around the side under the large arbor. We would make the new front path out of cobblestone (real cobblestone, not that smooth fake granite stuff). I hope Ned agrees; cobblestone is a little hard to walk on. But it is so pretty!! And it would make so much sense, considering the natural stone covering on the other spots.

I was feeling so happy sitting there talking to Elizabeth. This was because the whole thing reminded me of my book, Dirt. I won’t tell you any more because I don’t want to spoil the ending. But with a title like, Dirt: A Story of Gardening, Mothering, and a Midlife Crisis, you must realize that gardening figures into the story! But also, I felt happy to be making plans for spring planting! And, she’s a writer, so we were also trying to think up places for her to pitch her stuff about architecture and the garden.

Real spring is so close, there are sometimes even smells outdoors. Something kind of sweet and active. Even with 38 degrees and snow-like rain coming down, I won’t be fooled. I hear spring birds, I see fat rusty robins, I see yellowish green stems. I can pretty much say with confidence that we have kicked winter’s ass out the door. Flush March down the terlet already; we are talking real spring!

Why else would Natty be smiling so much?

Horrible, crying-all-day kind of day.

I missed my glorious bellydance class tonight, for the second week in a row. Black Wednesday descended on me early this morning. I had a feeling, after I came back from making the school newsletter, of big, bright emptiness opening up before me and I could tell I was going to fall in. I did my best to keep my head up, keep going. Try. Be High Functioning. I called a friend, made a coffee date, which I later blew off. I went to the gym. I heard from other friends on email, but I wasn’t my best with them. I ate a good breakfast. But then I ate more, way too much. Nothing felt right. My day was going to be a big, wrenching, unstoppable yawn.

There are some days that are like that. But I always forget that they are just days. To me, they feel like they are now the reality, forever, and then I feel even worse.

I kept thinking, Go to class, it will help. But every time I thought of how we were going to be learning more of that same choreography, for the recital, I felt my energy sink down. I felt I could not face it. I didn’t want to be in the recital. I just can’t seem to be in them. And then I feel even worse.

So I lay down for a while, and thought, You loser. You are napping your life away. And I tried to get up and then I noticed kids all over my yard. Plus a dog. This made me angry. Like I was being walked on, rather than my yard. But then I thought, You are acting like an old lady. It is nice that this neighborhood has come alive. Still, I felt anxious at the tableau before me, realizing that it was spring and I didn’t feel ready. I wasn’t ready for the noise, the warmth, the soft ground, the boys.

I did the token board with Nat, because I thought, Just because I’m having a bad day, why should he go without? So he helped me with the dishwasher, and I think that was my high point.

I cried a bit, wondering why I felt so hopeless in the face of so many nice things. I called Ned. He was coming home early, which was good. But I knew he was coming home early so that I could go to my class, which I was not going to.

Is it okay that I don’t want to share my lawn sometimes? Or work towards a recital? Is it okay if I ate ice cream for lunch to feel better? Is it okay that Ned came home early for no reason? Is it okay that I take my loved ones on emotional roller coaster rides?

Why does cake got to be so good?
–Eric Clapton, from Derek and the Dominos
Nobody loves you when you’re round and stout
–Eric Clapton

I woke up this morning with a fierce belly ache
I was feelin’ the effects of the B Birthday cake
I had eaten too much of that blue Baki
And now my debauchery doth mock me.

The problem at hand is the dread dinner hour
The mere thought of cooking is making me cower
I thought if I wrote something in a blog post
I’d get an idea that was better than toast.

But now my tummy is hurting real bad
Because of the little snack that I had
You see, 5 o’clock is my worst time of day
And that leftover cake would not go away

So I cut off a tiny piece, just a wee sliver
I dropped it onto my tongue — felt a shiver
Oh sweet delight, my taste buds awoke
My traitorous stomach said, “Illness? A joke!”

I swallowed it down, I couldn’t stop there
I scraped off the knife, then I sniffed at the air
I could smell the sugar, just feel it all ’round
Surely I could suck just a little more down?

And then I disappeared and a demon took over
She got out the frosting can, tore off its cover
And started to spread bits onto edges of cake
And shoved in great mouthfuls, till craven cravin’ was slaked

I looked down at Baki and the mess I had made
When Benji comes downstairs, all hell will be paid
I cleaned it all up, as best as I could
I threw out the frosting, oh demonic food

I came over here to recover a bit
of my sick little belly, my dignity, and my wit
If I’m to make dinner ‘ere the hour of seven
It had better be good — like Penne from Heaven

If I can trick the boys into liking the pasta
They maybe won’t notice the cake-like disastah
I’m afraid that I will just never learn
To shrug off the craving, to live with the yearn.

Ben’s birthday facilitated a creative cake, of course (see below), as well as some thoughts. Here are some things I’ve learned about life from cake.
1) Too much of any one color ruins everything (protect minorities)
2) Red dye is always pink and never becomes red, no matter how much you put in (know what is impossible)
3) Too much red produces bitterness (too much of a good thing ends badly)
4) Plan your cake well, but not too well, especially if you live with impatient people (take all styles into account)
5) Brownies make excellent building material (they just do)
6) It is very difficult to frost a Twinkie, but well worth the effort (hold onto your dreams)
7) Once you cut it, it is more difficult to work with (make only judicious cuts)
8) You don’t ever have to frost a chocolate bar (some things are perfect from nature)
9) Some people are shapes people, some are color people (know thyself)
10) Too much cake will make you sick (moderation in all things)

Today is Easter.
But tomorrow is Beaster! My little bunny is turning 10!
Shmutchie! Schmengie! Benj! Beast! Little B!
So little time, so many nicknames!

A year ago I would never have believed that we would have a day like this! This is the kind of day that makes me feel like I’m doing something right. Each child has activities they enjoy, with other people. It means they have learned how to go out into the world and be with others, happily and safely, and truly, what more could a parent want?

So packed with activities was our day, that Ned and I felt the need to write up a Nat-like calendar and divide up the shlep.

It started with needing to take Ben downtown and register him for the Anime Convention, which Max was taking him to for his birthday present (Beastie’s 10th birthday is Monday, the 24th, and so is my sister Laura’s, although it is not her 10th! Aries figures big in my family.)

So we took the car and drove everyone, including Max’s girlfriend into Boston. I drove back home with Nat, (I didn’t get lost coming back from Boston!) and we played a game and waited until lunchtime, when his buddy Julie would come to take him to lunch and something fun, also with his friend S and S’s buddy Christine. Nat and S have known each other for about 7 years and have played several sports together. S’s mom is a pal of mine and we thought the boys would do well on an outing together.

As soon as Ned came back from bringing Ben to registration and then dropping him off in Max’s care, he had to turn right back around and get Ben, who was done with the Convention. According to Max, many many people there thought Ben was so cute as a Mario ShyGuy, that they asked to take his pic and some even asked to hug him. I think this was not at all Ben’s scene, my little prickly darling!

And so Nat and I waited back home, while Ned went back to the Hynes Convention Center to get Beastie. Julie and company arrived around one, as the calendar indicates, and they all went off happily. Then I went to meet my friend for lunch and a good long gossip, and Ned and B waited until it was time to take B to an archery birthday party in Dedham.

I came back home at 2:30 and Ned took B. I hung around back here alone for awhile, waiting for Nat and Julie to come back from bowling and pizza. I did some reading and a little snoozing. I was awakened by footsteps at the front door; it was Ned! Not sure why he came in that way; we usually take the basement. I was all woozy from napping in as sunny chair and he laughed at me. We snacked a little and then he went up for a nap and I waited for — let’s see: oh, yeah, Nat and Julie!

Along came Nat and Julie, a full hour later than I expected them. They had had so much fun with S and Christine!! The boys had really bonded over their experience and Julie had a great time too!

Nat had a snack and a rest on the couch and I decided to blog this before I forgot everything. Thank goodness Ben is getting a ride home because I don’t think Ned or I could do another thing. And Max — who knows when he’ll be home, and whether H will be with him or not? She eats dinner here quite often, so I’d better get thinking of an idea. Argh, it’s already 5 p.m. and I don’t know what to cook. I hate that. All I really want is to eat my hamantaschen; there’s only 4 left, though and they are not low-carb…

And tonight, Ned and I will watch Curb Your Enthusiasm, which I think is hilarious.

Oh, today we’ll merry merry be,
Oh today we’ll merry merry be
Oh today we’ll merry merry be
And nosh some hamantaschen!

As well as being Good Friday for most of the world, today is also Purim, which means “lots,” as in one’s lot, or fate. (Thanks, Susan!) This holiday is the celebration of good over evil (as most Jewish holidays tend to be), when way back in Persia, around 423 BCE, Haman, a Hitler-like advisor to the King came up with a plot to kill the Jews. He was outwitted by the King’s Queen Esther (both of my grandmothers were named after her, as was my niece, her Hebrew name) and her brother Mordeccai (my dad is named after him, his Hebrew name).

Jews everywhere gather together, read the story of Purim, and whenever the name Haman is mentioned, we make a lot of noise. It is one of the few times when kids are encouraged to yell and scream during a temple service.

I used to love Purim best of all Jewish holidays. That was because it is also known as the Jewish Halloween: we got to dress up in characters from the story. I always dressed as a most fabulous Queen Esther. One year my grandmother gave me a real red chiffon ballgown with gold and rhinestones all over it, (she told me that the cleaners shrunk it) and I was allowed to wear it as my Queen Esther dress. It was magnificent. It still takes my breath away to think of the stretchy softness of the filmy red fabric, and the delicious weight of the gems. I think my next cossie (perhaps this one to the right, from the Legend line), will be called Queen Esther!

How fitting it is that today should also be the Anime Convention in downtown Boston. All over the city there are young people dressed in strange and wonderful, colorful costumes based on superheroes, comic book characters, and all kinds of imaginary beings. And two of my sons are as into it as I would be, if I could make a convincing pink-haired lass from Kingdom Hearts or something. But I draw the line at pink hair and Manga. Tis not my thing.

But … It is Max’s! For his birthday we got him a custom-made robe and silver-blue wig so that he could be Riku, from Kingdom Hearts, a charismatic blue-haired giant.

And later, when Nat comes home, we are going to make Hamantaschen, Purim cookies shaped like Haman’s tricorn hat!

Happy Holidays, whichever one you celebrate — even if it’s only spring!! That’s a lot!

Yes to dance beneath the diamond sky
with one hand waving free…

I actually never really liked that I Shall Wear Purple poem, because, why the hell doesn’t she wear purple all along? I know, I know, pay the rent, set an example for the children. But then again, huh?? Is it a good example to show your children a person putting their own life on hold?

But I also truly understand, and that’s wear the heat of my response comes from. You feel like you shouldn’t. You should fade and blend. Into the woodwork, the wallpaper, the background.
I can’t do that.

And the other choice seems to be cut this off, inflate that, smooth out this, buff that. I can’t do that, either. It doesn’t actually work, and it could kill you.

Self-hatred runs deep. It is tough to shake. We know, in our heads, that we have this and that to offer the world, but sometimes, our spleens do the talking. I have worked long and hard on trying to be the best person I can, inside and out, and yet I still cannot budge the “I’m fat,” or “I’m getting old,” messages. I read the Body Impolitic all the time. That blog really makes me think, and shows me a world turned inside out, where being fat is not only tolerated, it is celebrated. Laurie and Debbie really write beautifully and convincingly about how insidious and pervasive are the messages we all get, about how we are just no good as we are unless we look twenty and thin. I know that both are out of the question for me. I see women at my gym who are definitely my age and at first glance they are smooth and thin. But look again and you see the overworked arms, all ropey to fight off dangling arm fat. Overcoiffed hair, dangerously straight and ready to break off; super-high and round bustlines that just don’t occur in nature. And you can still tell, somehow, that these women are my age, even with all the outward signs removed or plumped.

I saw a different role model at my gym the other day. A woman close to seventy, with her glossy white hair bobbed and parted on the side, like a former flapper. Her face definitely had lines and bumps (i.e., no surgery or botox) but her eyes were startling blue. I stopped her and told her she was gorgeous, and asked her when she had decided to go gray. She told me she did that when she was 63, and was just plain tired of trips to the salon every three weeks to touch up the roots.

I told her how Ned tells me to let mine go. She wondered if it was because he was afraid of the chemicals? I said, “no, he just wants me to be completely natural. The way I was when he met me.”

The thing is, I’m not the way I was when he met me. I could go natural, but I’m afraid of how faded I would look. But I was thinking that just as there were almost no role models for me when I was a young autism mom, trying to figure out what I was supposed to be doing for my unique little boy, I ended up just becoming my own role model. I invented my own way of being an autism mom, and most of the time, that has worked for me.

So now, maybe I should work on becoming my own kind of older woman. One who is clearly not twenty or thin, but dances and wears pink sparkles. In the midst of chaotic family life, because life is for all of us to live and enjoy, to the max, right now.

One of the best parts of Dumbo is when Timothy the mouse gives Dumbo a “magic feather,” to help him fly. Of course, the feather is just a feather, but Dumbo doesn’t know that. Or maybe he does, but he believes so much in Timothy that the feather does, in effect, help Dumbo fly. It is only when he drops it that Timothy tells Dumbo the truth, and Dumbo realizes he has the power to fly.

For a while now, nearly a year, we have had trouble insisting with Nat, and following through on demands when he refuses. This started back in May, during our difficult spring. Nat would fly into a rage, stomping, biting his arm, screaming, and sometimes pinching and scratching other, if we followed through with a request, even if it was a seemingly small thing, like, “No, Nat, I can’t get the salt and pepper right now, can you get it, Nat?”
“Mommy will get salt and pepper.”
“Nat, come on, you get it.”
“Mommy WILL GET IT!!”

It was a test of wills and I, the soft, peace-keeping Mushy Mommy Libra, would almost always lose to my fiery Scorpio son. Sometimes, feeling like I was walking on eggshells and cutting my own feet to keep the peace, I would get the damned salt and pepper. Ick.

Nat’s school staff have come in periodically to help, by observing and giving me techniques for dealing with this. I have written previously in earlier posts, about M and how smart, dedicated, and kind she is, and her ugly yellow token board. The UYTB was to be used to get Nat to follow directions, in the familiar method they use (successfully) at school. Nat has to follow five directions, and then he earns 5 tokens/pennies, and can buy a preferred activity (reading, break, music, video, snack, laundry — yes laundry is one of his favorite things to do, Nat is pretty much the perfect man, if we could just get rid of the aggression — ).

I’ll admit that when I first saw the UYTB, I thought, “This is my intervention? A laminated taxi-cab-yellow reward system? Hello? Haven’t I been using those for years?” M explained that this would get Nat used to following directions given by me; that it would work towards breaking old habits and creating a new dynamic between us, where I make a demand and he complies. I really trust M, so I decided to give her the benefit of the doubt and follow her directions to the T, (or to the UYTB) and see if there was a difference in our homelife.

I found myself thinking about how I am (still, after all this time) on some level uncomfortable with being an authority figure. Perhaps even on some level with being an adult. Sometimes I think, “Wow! I can’t believe I’m doing this thing (whatever it is, such telling Max he must earn money over the summer, or cooking five different meals at once) it’s as if I’m a Real Grownup!” And Nat, ever sensitive to how certain people are feeling, probably detects my malaise in this role. Maybe M detected it, too, by observing how I drop my demands. To be fair to myself, our household was not very conducive to follow-through, because of Nat’s volatile moods.

M told me to set myself a goal of using the UYTB twice a day. That way I would not feel overwhelmed by its strangeness, by the alien formal dynamic it sets up, between Nat and me. So that is what I have been doing, and I have been becoming increasingly comfortable with the UYTB system. Every day (just about), I have a 5-part conversation with Nat, who definitely takes the UYTB seriously, and I have him also do some household chore. He earns whatever he has chosen.

Even if the activity is something he used to get “for free,” he is now willing to earn it. That is very interesting and gratifying to me. Last night, I was tired and just barely pulled dinner together. Nat started going on and on about how I should get the juice. I told him he should get it. I suddenly saw the UYTB in my mind. I imagined how I should have had Nat earn tokens by setting the table. It was too late, now. I had already set most of it. But — he could get the juice. I could imagine him earning it. I knew I had to power to insist.

So I did. He got the juice. He slapped the table hard, but he got the juice. Is this development because he is so comfortable with and accustomed to the UYTB at school? Or is this progress because the UYTB makes me more comfortable with being an authority with Nat?

Perhaps I should consult with Mrs. Jumbo, my alter ego.

I am having great day, I went to Dunkin Doughnuts.
I bought a blue berry muffin I took my boots off and
put
my sneakers on thanks for sending my sneakers.
see you when I get home
Love
Nat

Sounds like a friendly email, right? Well, I don’t know. If you knew what I know, you would read sinister undertones into it.

Sometime this past weekend, Nat came to realize that his old sneakers had been removed from the shoe basket and thrown away. (Ned did it, and then went away for the weekend, thanks alot, Ned!! Also, some similar sneakers that Nat never wanted to wear, were discarded in a typical Ned purge, comparable to the zeal of a Stalinist purge, minus the bloodshed. Every once in a while, the purge neuron fires off in Ned’s complicated brain, and suddenly I’ll find some tiny corner of our otherwise messy house cleaned to within an inch of its life, like my copper pots will suddenly be orange with an unfamiliar shine, or my corner of the desk will be in files and folders.)

So Nat was upset not to see the familiar pile of shoes in the shoe basket. He kept saying, “New sneakers.” And I kept saying, “Nat! These are your new sneakers. Those other ones were your old ones, so we threw them away!”

Oh, how could we have been so stupid? So now every morning there is a struggle. Nat will only wear his boots to school. He refuses to wear his sneakers, even though he wore them for the last month! Somehow, throwing away the other ones rendered these No Good.

So I got sneaky. I hid his sneakers in his backpack this morning and wrote a note to his teachers: “Help! Nat refuses to wear his sneakers!”

And when I got that email from Nat, where he thanks me for sending in the sneakers, to me it sounded kind of sinister, like, “How very clever of you, Mother! You may have outwitted me this time…”

And of course, “See you when I get home,” felt less than benign…

I was thinking about how we make up words in a song, if we don’t know some of them, so that we can continue singing it. When I come to a part I don’t know, I generally lower my voice and sing quietly the made-up stuff, and then go on with the part I feel confident about, and hope no one notices or calls me on it. I think of this a lot because I am always singing something to myself, and lately, these songs are Arabic, and of course, I don’t yet know Arabic (except a handful of words: wella means yeah; inta means you). Just now I heard myself singing, “With Leyla, Wella, and a shufti -loom, me anno wella no inta boom.” (From “Lelsama,” by Natacha Atlas.) Around the house, it probably sounds to my boys like Mom knows what she’s singing, but around anyone else, I keep it quiet.

It’s embarrassing not really knowing the words. But that same thing is something we all delight in and laugh about in our children as they grow up. One of my all-time favorite stories about this is when Little Nat was watching Corduroy, the Weston Woods movie, and there’s a part where the night watchman catches Corduroy upstairs and says, “You shouldn’t be up here.”

I remember watching Nat babbling the movie to himself, and hearing him say, “You shouldn’t be a bear.”

I just love, love the way kids get things a little “wrong,” and yet they are kind of right, if not better, interpretations of what is going on. Perhaps Corduroy really should not have been a bear; he was so much more human than that. Imagine all he could have accomplished if he had been allowed to roam stores at will. Not only would he have successfully replaced his overall’s button on his own and not be dependent on others; he would have been free to own a huge bed, let alone sleep in one!

But then again, Corduroy was supremely happy being a bear, especially when Lisa took him home.

What do I know, trapped in my adult, neurotypical, human configuration?

It just goes to show you. There is no way of knowing who is happier, or more the way we should be: the outwardly successful adult who embarrassedly whispers fake Arabic to herself; or the autistic little boy, who blithely reinterprets classic children’s books?

[Ned reading to Nat, 17 years ago, Arlington, MA)

As I got ready to reserve my Cape Cod summer rental — as I do every
March — I thought about last August, when Nat, my 17 year old
autistic son erupted into a difficult temper tantrum on the beach. I
remember watching him, nearly six feet tall, stomping and jumping
and screaming, while all the families around us watched in shock,
confusion, horror, and fear. Nat’s father and I helped Nat calm
down, having been dealing with this kind of thing for years, and I
even had the energy to force a smile and tell everyone witnessing
this that we had it all under control. The moment passed, but of
course, it remains in my heart, another stone of worry, another
question mark about the world’s ability to deal with Nat.

It’s a tough world out there, or so the saying goes. And lately,
with transition to adulthood hanging pendulously over our heads,
those words are the Greek chorus in my own family drama.

It seems like only yesterday that I was fighting with our school
system, trying to get him a place in our neighborhood school, or any
school within our town, but being told, “No, there’s nothing for him
here.” Only seven years ago I fought with our synagogue to get him a
Jewish education, too. And how many different extracurricular
activities were not quite “a good fit,” and thereby closed to Nat?

We have always been painfully aware of that real world out there,
that seemed to lay in wait for Nat like some dark, fearsome
creature, and so we fought for him on all fronts. We worked hard to
get Nat everything he needed, from education in a private school for
autistic children, to afterschool tutoring in academic and play
skills, to one-on-one aides that would allow him to enjoy school
vacation week outings or summer camp, or a week at Cape Cod. We
sweated for a year to prepare him for his bar mitzvah, but he did
it, tallis, Torah, and all.

And this is all while living in the Boston area, surrounded by
qualified specialists, in an era where an appropriate education for
all children is the law, in a country known for its emphasis on
education.

I have learned that once he turns 22, even with a scrupulously
comprehensive education, it is like falling off the edge of the
world for kids like Nat. There are no mandates in the corporate
world, other than that employers may not discriminate based on
disability. As difficult as Nat’s childhood and education have been,
there are even fewer resources for adults. Competition for funding
and services like job coaches is so harsh that chances of getting a
job are very, very remote, if not impossible.

And then, there’s the workplace itself. According to the Equal
Employment Opportunity Commission, there are some 2.5 million
intellectually and developmentally delayed people in the United
States, and only about 31% of the country’s intellectually impaired
people work at all. The biggest cause of
this? Bias. Prejudice. Unwillingness to accommodate, or even to give
someone like Nat a try.

Why? Why is a great country like this, with laws like the IDEA,
willing to accept such a low standard for so many of its disabled
adults, after investing so much in their education? When will the
workforce leaders begin to realize the untapped potential among the
disabled – sometimes with very minor accommodations? Accommodation
need not only be about building ramps and elevator lifts. Sometimes
accommodation is about understanding that some people behave
erratically, and how best to manage that. Some people may have to
flap their hands or rock or talk to themselves in order to
comfortably perform a task. Sometimes support on the job is about
dealing with a coworker who cannot make small talk around the water
cooler – but give him his work routine, and he will perform it
flawlessly.

I can see that the next frontier is going to be all about getting
Nat a job; cutting a swath through all of the reluctance and
ignorance that’s out there. There will probably be a lot of trial
and error with his employers, just like there was with Nat’s early
school programs. In the end, hopefully we will learn as much from
our victories as from our mistakes.

I used to think that life was hard, just because Nat had a tough
time on playdates. I used to feel that our Cape Cod vacations were
difficult, because of how people would stare at Nat chatting with
himself up and down the water’s edge. I smile wistfully at my
younger, naïve self, as I gird myself to slay this latest dragon.
Back then, I didn’t know what tough was. I’m afraid that compared to
employment, childhood and education were a day at the beach.

I am so in love with this class I’m taking, and with my teacher. She is a beautiful little thing, and really funny. Melina has a true zest for life, and all its parts. I love that. The feelings she conveys are often precisely what I am feeling. She has a writer’s way of describing movements, so that I can truly understand the emotion behind each one, the look of each one. We are working on a choreography to a song called Cleopatra’s Frenzy, which she calls a kind of “erotic frenzy” of a dance. Some of the movements she describes as, “Go away, you can’t have me,” or “Proud Queen,” or “Suzie Q cross-step,” or even “constipated, Egyptian style: dance as if you are stuck inside a column and all you can move are your hips.”

The class is going to have a recital on April 1 at a local restaurant, where my teacher reigns as the star dancer. I am trying to learn the choreography so that I can be in the group dance. It looks great even now, with the class only having learned it last week.

I realized something essential recently: it’s no shame being where I am, semi-beginner. No one is going to be looking at any of my performances so that they can say, “Stop, you fraud! You think you can bellydance?!” I no longer care about being just where I am, not at all perfect as a dancer. I feel like a Bona-fide Beginner, (rather than Total Newb) and as I said in the last post, being can be good enough. Feeling this way has a positive effect on how I dance, of course, in that I now can look at people, and not feel like cringing about myself and what they must be thinking. I felt this happening in class last night when we were all practicing the group number and several of the Intermediate dancers were watching us, waiting for their class, which was next. I felt a sisterhood, a community, rather than a snippy catlike competition. I gave it my all, looking outward, rather than at the ground, and I felt like a real dancer.

The moves in this piece are so bellydancerly. That means they are full of joy, or coquettish, or proud, almost militaristic and straight up and down. There are arm movements that are palms-up, starting at hips, and rising up into the air overhead, a proclamation of owning-the-room happiness. You can’t help but smile while doing it. I don’t even have to think about my expression when dancing in Melina’s class. It’s a sweaty, hard working grimace, but it’s gloriously happy.