Susan Senator

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.

Hi Mom
How are you?
I am having a great day.
Today I went to gym class.
It was fun.
Love
Nat

I’ve been thinking a lot lately about what one gets out of other people. For the longest time I think I have wanted to get essentially the same thing out of each and every person I know, subconsciously. Every friend I would make, I would try to get as close to as possible. I would want to know how they think, what they love, hate, what makes them laugh. Intensity + intimate sharing = love and happiness in my mind. Or it did.

I would also want them to know about me that way, and to care equally. Ah, therein lies the rub. This particular rub became apparent to me when I first started seeing Ned, in college. I remember asking him, “But do you love me as much as I love you?” And he would say, “How can I know what your love feels like in comparison to mine?” Which to me would seem like a no, and I would get mad and hurt.

Eventually I realized that Ned was right: you cannot expect to know that the other person will feel exactly the way you do about you that you feel about them. The more difficult lesson for me has been to understand that this is okay; that even if Ned did not love me as much as I loved him, it was okay for me to feel the way I did. There was still a worthwhile relationship. There was still love. And there was no shame in what it was. It just was. I learned that my old way of being was a useless, self-tormenting kind of exercise.

But I still sometimes wondered, and I still sometimes harbored this expectation of reciprocity in all of my relationships, not really aware that I did. Then, along came Nat. Nat has made me aware of this issue in a whole new way. I get an email like the one above, and I find myself sighing that they are so similar, his emails to me. They are “only” about some scheduling aspect of his day, and he always says it was “great.” They were not enough.

Today I thought a few things when I realized this. I thought that I was sad that I could not get deeper thoughts or feelings out of Nat. And when I realized this, I felt a burst of relief, actually, because I recognized this desire as a permutation of that same very old dynamic with Ned, whereby I wanted to know his every thought and feeling and compare it to mine and hope it was the same!

But I have learned that people just give you what they give you. They come into your life as they are. They are not as you are! They are just a gift, in the sense that a gift is given to you, and is not necessarily something from your wishlist. A gift is what that other person is giving to you, wholly from them.

Who says that I have to get something more, somehow, out of Nat? Nat, the whole person, truly exists, with or without my mind understanding his mind. He is not some two-dimensional being, simply because his conversation is spare and sparse. I stand next to him, and I can just feel the golden rays of his essence.

That may be all that I need.

A friend asked me to write something about Nat’s hygiene practices. So, I’ll tell you straight out: they are not the best. He showers independently, has for years. He does it all independently and yet, he is not thorough. There is a certain degree of stink in all young men of a certain teen-age; my Natty is as typical as they come in this regard. Sweats like a man. But, come to think of it, even the Wild Beasts in the family, who are pre-pubescent, have their moments of funk. It’s just a guy thing. Hormones run free in my house.

So what do we do? One of us is usually nearby when Nat (and Ben) goes to shower, just to hassle them a little about scrubbing. We remind him about deodorant; often I just slather it under his arms for him, which makes him laugh. He is not averse to becoming clean; it is just not a priority of his. Of course, we make his shower time extra fun by buying a lot of 99 cent shampoo that he can squeeze out to his heart’s content. I hear the “thunk” of yet another empty bottle of Suave in the garbage, and I know that Nat is deep into his shower.

Nat was never opposed to being washed or combed, or any of that. He’s just not that into it, though, and I guess it is not a huge priority in our family, either. We are not dirty or anything; just kind of scruffy, is all. Except for me, of course. I am considerably well-groomed. I’m the girl, after all!

I don’t have any words of wisdom about hygiene and autism. Or hygiene and boys. I take it a shower at a time, and I try to remember that “it’s only a phase,” whatever it is.

I remember when Nat was a baby, the first time I ran a comb through his cottony platinum locks, he giggled and giggled. Oh, Sweet Boy. Now he loves getting his hair cut, but that could be because Erin, his stylist, is such an adorable young woman.

Just yesterday I was noticing pink marks all over the woodwork and my new shower curtain from Restoration Hardware, in the bathroom. Later on at dinner I saw that Beast had drawn a pinkish-red crescent-like symbol on the back of his hand; some kind of Beastly fantasy or something going on. Instead of feeling any annoyance at the ruin of my lovely white bathroom, a wistful wave rose through me. I said, halfheartedly, “You know, when you draw like that on yourself, I wonder if there’s a way we could keep it from getting all over the bathroom.” But the truth is, I didn’t really mean it. I will truly rue the days when my bathroom and my sons are all at last completely clean.

An Egyptian Police Band gets off a bus in a sleepy Israeli town…

Sounds like the beginning of a good joke, right? Well, it is the beginning of a great movie! Ned and I snuck out tonight to see The Band’s Visit, a small indy film from Israel, chock full of good looking Semites, both Arab and Israeli. Wow. Not only is this movie easy on the eyes, it feels good on your heart. It is poignantly lovely to watch the dynamics as the few townspeople and this band of guys slowly warm up to each other. Hotheaded politics take a backseat here: it is all human interactions, awkward, sweet, disappointed, sexy, bored, hopeful. And at the end, some lovely classical Arab music, which made my hands start to move, Taksim-like and snakey, all over Ned, who nearly dropped his popcorn! (Just kidding, we ate it all during the previews.)

I swear I am going to learn Arabic – maybe even bookra!

Do not squander time, it is the stuff dreams are made of.
–The sign at Twelve Oaks, where Ashley lived.

These are the days of miracle and wonder…
–Paul Simon

Relentless aches and pains. Irregular cycles. Being blue for no reason. How do others deal with their own mortality and aging? I have to see my doctor today and I’m scared. I can no longer tell myself, “Oh, don’t worry, you’re young.” Because I’m not.

And with Max turning 16, and Nat moving towards moving out, I am starting to feel old. I find myself having thoughts like, “This is the best I’ll ever be, for the rest of my life!” This?! I’m never going to dance better, etc. I feel like I’m dealing with aging, and not very well.

It is hard when society makes you feel like the only people who count are under 35. The only ones having fun are twenty-somethings, the only way to be beautiful is to look under 35. And there’s no way you really can, unless you’re actually that age. I know in my head that that is not true, but it is hard to make my stupid inner self understand these things. My children have their lives ahead of them, God willing, and I wish I did, too. I wish I didn’t squander time when I was young. Youth really is wasted on the young. But here I am, squandering away, right now.

It is also hard for me when things start to feel very settled, and very linear, proceeding towards a certain goal. I have said before that I don’t like feeling settled, I don’t like feeling like something is resolved or over. I have a really hard time letting go. So now I’m supposed to let go of being a young woman, a young mother. And yet my grip is Gorilla-glue strong. I am not doing it very gracefully, I’m afraid.

A great day, except most of us are now sick (from overeating and/or colds)!

March 9 is Maxie’s 16th birthday; tomorrow. But he’ll be celebrating it today, all day. First, H is coming over, and then at 1 he is meeting about 8 friends at the movies, to see Jumper, and then back here for cake and pizza and a total Geek-out. We are moving his gaming stuff up to the third floor, where there is a large living-room and an equally large Oriental carpet from Grandma B (what would she think of us all now, all grown up? Ned’s Grandma B was quite the formidable woman, tall, white-haired, eagle-eyed. She adored the boys and always broke out the antique toys when we visited her in Westchester.)

Max has his eye on the third floor as a bedroom. I think it’s an okay idea, except I kind of wanted it for Ned and me. Ned wants to convert it into an office space. I just want a master suite with my own bathroom. It’s funny how you grow into a house. When we first moved in, we could not imagine using the third floor, and now there are three of us fighting over it!

All the party guests will hang out up there. I told Ned I’d have to vaccuum. It has not been cleaned in a while. He said, “Uh, yeah, right…we don’t want to expose teenagers to dust, after all.” Well, I don’t! I hope we don’t need to turn on the heat for them; I have not had a delivery of oil for years, not since we converted the first two floors to gas. We left the ancient boiler for the third floor — which, as I said, we rarely used — and now I am regretting not converting that one, too. Oh, well. There is always a never-ending list of house projects, of course. In fact, the entire third floor should be replastered and painted. And the bathroom up there… And I’m not entirely sure that the huge water stain up there on the ceiling is old. Every time I look at it I say, “Did it change? Is it getting worse?” Or was it always this huge, yellow, and ugly, like a map of some gruesome netherworld?

So, around ten teenagers here for dinner and third-floor gaming. And, of course, cake. We will bake the cake this morning, with Nat, and decorate it in the afternoon, with Ben. Nat will be out with his buddy from Northeastern University, and Max will be at the movies. Ned and I came up with the cake idea days ago, and we are all set. Cake pics tomorrow!

My friend Robert Parish, autism dad and documentary filmmaker, just published his book, Embracing Autism, (Wiley/Jossey-Bass) which is a collection of essays written by parents, professionals, and other folk in-the-know (autistics themselves). The book is meant for educators, primarily; to give them a feeling for the range and flavors of ASD. I wrote the foreword. Stephen Shore, a writer and speaker (and very good guy) with autism did an essay, as well as Autism Vox’s Kristina Chew, professor, autism thinker and Charlie’s mom; my unique and irrepressible friend Kim Stagliano, writer and mother of three girls on the spectrum; autism parent, law enforcement expert and entertaining speaker Dennis Debbeaudt, and many others, each very readable and out-of-the-box. Rob did a very good job wrangling so many different personalities for his book, as well as writing some beautiful and very helpful stuff himself. Go out and get yourself and your kid’s teacher a copy!

Here’s what I just sent to Nat’s team. This happened just now:

Hi —
FYI, We just had a pretty intense outburst here, right as Nat got off the bus. I don’t know what caused it; I guess because there were dishes in the sink. (?) Of course I immediately felt like I had to clean out the sink and empty the dishwasher, to keep the peace. So of course, I just reinforced his intimidating behavior.

Ben has a friend over, too. Nat was escalating, muffling screams and biting his arm, so I had to tell Ben and his friend to go upstairs to eat their snacks, which I never do, in order to clear the room.

I don’t know how many times I reset the timer to get Nat to calm down. He was throwing things in the livingroom and playroom. He threw a water bottle at me.

I managed not to get hurt, though. No one els got hurt, except for Nat, of course — his bitten arm. I gave him his afternoon pills and also a Klonipin, which is what we use for last resorts. I feel utterly beaten down and angry. I see that we are making the right move, when it gets like this. I cannot teach him anything new, I cannot make any demands on him. I forget how it can be. And I was feeling so bad about it, all day today. But now —

I can’t believe this is that sweet boy of mine. I am trying not to cry because all the kids are here.

Sue

My new George Abdo CD, from Ned’s mom, with classic bellydance songs, my Egyptian dress-style costume, and my sword, from Puerto Rico. Love the whole thing! This may be my best performance to date.

Take a look at the other things in my universe…

I’m sorry, darling.
I wish that my egg had not had that crack–
And yet that gave us you.
I wish that my brain knew exactly what to do
With everything that has made you struggle
I wish that my patience had been deeper, thicker, bouncier
So that I would have never yelled hurtful things at you
But I would have simply rolled with it all
I wish that my bank account had been endless
So that I could have bought all the help you needed,
I needed.
And that my days had been long enough to do it all.
I wish for us more time
And yet, I need it to be the way it is.
And I’m so sorry

But — if it had all been different,
Then so, my dear. would you.

We had our final visit from home-based services at Nat’s school, the last of a series of visits structured around the question of whether Nat could benefit from a move to the residences at his school. Home-based is a very small department at Nat’s school, and is supposed to be only as a consulting service to the family. The staff in home-based come to your house and discuss the problems you might be having in your home life, the challenges, and they help you come up with solutions, and then train you to run behavioral modification programs with your child. In this case, M was coming up with solutions as well as taking notes about the dynamics within our home around Nat.

M is one of the most competent people I’ve ever met, as well as one of the sweetest and sparkliest personalities. Nat’s school seems to attract quite a few of these enthusiastic, high-energy young teachers. My first experience with her was when I was particularly irritated over the Guardianship quagmire, and I called home-based and ranted into the phone at the first person who answered. It was M. She was wonderful with me. She made a bunch of calls there and then to get me some answers, and then kept following up with emails. She didn’t even blink from my yelling. She knew immediately that it was not personal and that I was simply a parent who was drowning in the state’s bureaucratic marsh known as Transition to Adulthood.

So you can imagine how thorough and responsive my home-based services pertaining to Nat’s aggressive and self-injurious behaviors have been. M was the creator of the ugly yellow token board, and other such magical tools for connecting with and teaching Nat. (That little yellow token board makes Nat sit up and take notice. It also makes him smile. Yesterday he earned his video, rather than just watching it. We played a question-and-answer game, and he seemed to be very curious about what I was doing, using that token board like he uses in school, and very eager to humor me.)

M came over Monday to see how I was doing. She told me that they were going to make the recommendation for Nat to move to residential education. I think she could see how this felt to me to hear this. At first I felt that same old feeling of failure, of having let Nat down. All his life we had heard of residential placement as being like the last stop, the place where you sent your kid if you couldn’t handle him anymore.

But she talked very candidly about Nat in terms of his being 18; of his many strengths, and how that kind of setting will most likely help him truly achieve his IEP goals, to generalize them into a home environment. This last goal, she pointed out gently, was not being achieved in our home. She talked of how Nat’s erratic behaviors and moods were one factor that kept us from following through with so many things. The chaotic nature of the household and the other boys’ needs were another factor. Frankly, there is just too much going on for us to be as consistent as Nat needs for his adulthood training. (And this, by the way, may add to his anxiety levels at home.) Couple all this with the fact that we have never been able to hire real behavioral experts to work with Nat in the home. The cost is exorbitant for these Board Certified Behavior Analysts (BCBAs), and our school system refused us that service, other than to offer us four hours a month of a BCBA to train me. More consulting!

The fact is, I have been trained. Again and again. It is not about my training. It is about my being human, my being Nat’s mom so comprehensively. I cannot also be his teacher. It is not about money or effort. It is more than that, and less. It is our inability to consistently provide the right environment for Nat, and so he spends so much of his time on the couch in front of the television, not functioning at the same high levels he does at school. Not learning what he needs to know, not learning what his neurotypical brothers can pick up through breathing. This is not about Nat needing “down time.” He gets plenty of that, even in school! It is about so much unproductive time, when he needs to be growing and learning. I have paid out of pocket for so many people to come here and try to help Nat expand his leisure activities or his ADLs. I can only accomplish so much that way. And I want him to get his full education so that he has the best chance at being as independent as possible as an adult. Now is the time for education. We have three more years.

This is not a criticism of Nat’s neurology. I love Nat, and the way he views the world. This is about my job as his mother, and my desire to get him his full right to the fullest life possible. His right to have as much of his brainpower switched on, so that he has a good life, one that is not too dependent on others, or the state in the long run. The experiential, consistent, kind, and connective training his school gives him is the way that this happens for him. This is our Late Intervention, our chance to get him intensive training the way the 0-three year-olds do. Which Nat, by the way, never got, because no one except me knew that he needed anything until he was already 3. And he did not even get to to the right program until he was five. So…

(Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr look out, here comes the Mad Elephant Mommy)

Where was I? Oh, right. Because of M, I learned that residential recommendations are mostly made for very promising kids, who stand to expand their capabilities with IEP work 24/7. During the week, when Nat will live at the school, he will do things like create shopping lists, plan meals, shop for groceries, put them away. He will connect all the dots that I have not been able to do for him. He will learn through experience, through consistent and kind exposure to things.

And he will come home on the weekends, and whenever we want.

Ned says, “It’s kind of like college for Nat.” It is, and it isn’t. But one thing I am feeling, because of M and because Nat’s school has been so humane, all these years: is that it is not a sad thing. It is a positive move for Nat’s training as an adult living In This World.

Today I woke up instantly excited and full of purpose: it was my Baby Bellies’ dance recital. When I first walked outside, I entered a day that matched my mood: soft and warm. The air around me was like smooth palms on my face. Tiny green bulb fingers had poked through the brown pie-crust covering of leaves in my gardens overnight. “Ha-ha!” I said to Max and Ben as we opened up the car. “Spring is coming. Can you find some signs of spring?” Ben actually answered me: “There’s almost no more snow.” Max didn’t answer, but he seemed to be looking around, at least. I pointed to my sunny wall garden, where already the cerastium was greening up — it would eventually burst into the little white flowers of snow-in-summer, but not yet. “Look there for clues,” I said, “because that’s where it is sunniest and warmest.” Max nodded.

It is very important to me that the boys look around and notice things that they are not accustomed to thinking about. It is easy for them to get pulled into video game characters and technological wonders; but they need to let the basic human relief of early spring touch them, too.

I feel that I have succeeded in peeling back the Baby Bellies’ awareness of music and how different instruments feel like — and ask of you — different things. The Misirlou is a perfect way to teach this, because its sinuous melody seems to really call for the use of veils, of things waving around through the air. I tell the girls to listen for the flutes, listen for the rattle, and to make the movement that comes naturally when you hear them: pedal turn to the flute; shimmy to the rattle. Notice when a phrase is coming to an end, as your signal to shift from a line into a circle. That kind of thing.

I got to the theater early with my bag of shmattes leftover from my party, and started hanging veils all over the stage. I went backstage and found a few pieces of scenery to use: a lantern and a painted fireplace. draped my newest cossie belt over a stool for more color. I thought it looked great. This set design was probably the most fun part for me, other than the joy of watching the Baby Bellies dance so well.

Just about every mom showed up, and even a dad or two. The Extended Day classes came to watch, and one or two teachers who were around. Ben worked the curtains and Ned worked the camera. We were able to run through it twice before our performance, which we did twice, too, because it was so brief!

I had brought three bags of donuts and another mom brought a tray of cookies. All were devoured in minutes. I could tell that the girls were really happy with how they’d done. I was totally in a sweat when it was over, but I couldn’t have been prouder.