Susan's Blog

Wednesday, March 12, 2008


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.

Monday, March 10, 2008

Let’s Hear it for The Band

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!

Days of Miracle and Blunder

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.

Saturday, March 8, 2008

This One Takes the Cake!

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

Tabblo: Max's Sweet Sixteen

Suite Sixteen

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!

Thursday, March 6, 2008

Embracing Autism

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!

Self-Injurious Behavior With Aggressive Outburst

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.


Let George Do It

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.

Wednesday, March 5, 2008

Life is Always Bigger

Take a look at the other things in my universe

Residential Thoughts

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.

Late Intervention

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.

Tuesday, March 4, 2008

A Bellyfull of Joy

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.

Saturday, March 1, 2008

Les Joies de ma Vie

Watching Nat play basketball
Listening to Ned tell a story
Listening to Ned laugh
Watching my hair stylist do her fantastic blow-out on my hair
Watching B draw, with tip of tongue pressed againstteeth
Watching Max smiling the 1,000 watt smile at H
Hearing from a long lost friend
Finishing a 3-mile run in a decent time
Hearing the joyful “Nat!” greeting from the entire team when we finally arrived at the State Games today
Watching when B gets a sophisticated joke
Getting an idea and writing something great from it
Seeing how Max’s friends have grown up
Making a really great eggplant parmesan for a dinner party tonight
Having four gorgeous dresses to choose from for the Library Gala tomorrow night
Making Laura laugh
Being comforted by Mom
Hearing Dad say, “Proud of you, as always”
Realizing I really am a bellydancer
Anticipating my agent’s excitement about the new book
Hearing from the New York Times about a piece I wrote
Watching a movie that I like with my boys

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