Susan's Blog

Friday, October 31, 2008


Sorry, sometimes politics must trump all, especially when our kids’ needs are at stake. I don’t usually do this, but it is my blog, after all! I urge you all to vote for Barack Obama for President. If for nothing else, think of what he intends to do for the disabled. This came my way and I was just so excited to see it that I have to post it! All emphasized bits were done by me, including the “yay”s.

As President, Barack will begin by creating a new White House post:
Assistant to the President for Disability Policy. He will press
Congress to pass the CLASS Act and the Community Choice Act to help
Americans with disabilities to choose to live independently in the
community and to help them pay for the direct care workers, assistive
technology and other tools that make independent, community-based living
possible. (YAY!!!!) For our children, Barack will continue his fight for full
funding of IDEA so that students with disabilities are assured of a free
appropriate public education. Barack agrees that funding IDEA at less
than half its authorized level is a disgrace, but he also understands
that merely wringing more money out of Congress is not enough. His
Secretary of Education will fully implement and enforce IDEA. Local
school districts’ foot-dragging and resistance to IDEA, denying teachers
what they need to serve kids with disabilities in the most inclusive
possible setting, will no longer be tolerated. (YAY!!!)

It’s easy for me to say that my friend Barack will do these things, but
this isn’t just friendship talking. I know he will do the right thing,
for two reasons. First, there is his record: As an Illinois state
senator Barack Obama sponsored legislation that created an autism
spectrum diagnosis program, designed to implement evidence-based best
practices. Barack worked with Illinois families to build the Easter
Seals academic programs that prepare students for independent living.
Moreover, Barack helped pass Illinois’ mental health parity law as a
State Senator. Barack understands that we need universal screening,
education and early intervention strategies for all children, but
especially children with disabilities. That’s why he intends to provide
$10 billion per year in funding for developmental programs serving
children between birth and age five. Barack has long supported the
Family and Medical Leave Act; as President, he will expand it and help
the states create paid leave systems to ease the tough choices that are
faced every day by working families providing support to a disabled

That sounds like a good use of tax dollars to me. Where else might the money come from? Oh yeah, I hear Obama will end the war, which apparently costs us billions per month… so maybe we actually would not even need much of a tax increase!

Wednesday, October 29, 2008

Additional Keys to the Universe

1) Mad Men
2) Fun Size Milky Ways
3) Nourhan Sharif bellydancewear
4) Opi mauve
5) My English class
6) Raqsat Vashti
7) Ned’s Civic Hybrid
8) French onion soup
9) A great eval from my supervisor
10) The I.T. Crowd

Tuesday, October 28, 2008

An IEP for Life

Why does all the support slow down and become suck city when a special needs person reaches 22? What’s magical about 22? Why not 32? Why not for as long as he is alive?

Oh, Welfare State, some of you are no doubt thinking. Crazy-liberal-Social Contract-Big Government types! Spend, spend, spend!

Yes, spend. Spend on social programs. Create supports so that people can get the help they need to live decent lives, so that they can fulfill their potential. We can only benefit from such a plan. And you know what else? Our government is big whether you know it or not. It just depends on what you want to be big. You may want a very large military operation. You may want highways maintained with government funds.

You may want every single person in the country to have an education, regardless of ability to pay. You may want to see every single person working, playing, and living as fruitfully and as healthily as they can, above all else.

I want that for Nat. The education that Nat is getting right now should extend into his adult life. I want to see the progress he has made continue. I want Nat to be able to work, because he clearly gets joy from being gainfully employed. I want him to continue to learn how to converse, and how to take care of himself by learning social skills, cooking, cleaning, medical self-care, community safety skills.

I have seen what the years and years of publicly-funded schooling has done for Nat. He has gone from being a child with almost no words, no play skills, no desire to interact with others, no ability to follow directions or to get what he needed, to someone who has all of that, and more. The more he is taught, the more he learns. He will not need to have constant care and attention in an institution, the way people did decades ago. He will not feel the need to explode with frustration because he has been taught how to express himself to others. He will form relationships and contribute to the general happiness around him.

These accomplishments have value, from financial to emotional to social to communal. Yes, it cost a lot to bring Nat to this point. But I think it was worth every cent. He took every bit of energy teachers devoted towards him and he pushed himself to learn, to compensate for his differences. And in turn, he has taught those around him a lot about different perception, about God, empathy, and unconditional love. Nat has returned society’s gifts in equal or better tender.

So, I’m sure, will all of your kids, if given the opportunity.

I want them all to have an IEP for life. I want it for them, and for Nat. I want to see what else Nat can do. I want him to experience the world unfolding, the wonder of understanding, the beauty of other minds, the joy of connecting and achieving. If he has staff around him as an adult the way he does as a teen — people who patiently and gently provide structure, modeling, prompting, praise, and repetition as needed — I can only imagine the strides he could make.

Isn’t that every bit as important as building a better highway system?

Monday, October 27, 2008

More Halloween

Over the weekend we went whole-hog Halloween. We did the house decorations, we carved punkins, Nat and I made fudge, later he went to a Halloween party at the high school, Ben and Ned finished Ben’s costume, and after Nat went back to his House to go to yet another Halloween activity (Halloween Town), we four + Hannah attended Pumpkinfest, the autumn fundraiser at Ben’s school.

Tabblo: Halloween Activities At My House

Sunday, October 26, 2008

Sweet Nathaniel

Seem to come and go…
— Allmans

As I write this, I feel vomity guilt rise in my throat, but it is true: I go through my days mostly not thinking about Nat, except stray moments. I walk past his door and notice how he makes his bed now that he’s been living at the House. I see his empty chair at the head of the table, where we put him back when Ben could not stand to face him, so bad was the hate, anger, grief, whatever stew of emotions he felt.

When I suddenly do think of him, my heart lurches. How did I not think of him, that moment before? How can I have dropped the thread?

I always felt bad about the seat-change in our dining room. I know how Ben felt. I don’t know how Nat felt. Did Nat pick up on Ben’s hostility? I think Ben made him skittish, at very least. I never knew what to say to ease the pain between them. I did a terrible job of it. The flood of happiness and little-boy bounce that Ben exhibits is just golden to me, a light laugh, a blessing from God. My own happiness, my freedom. Max’s freedom to just be the crabby grunting teenager, no guilt. It was all born of Nat leaving, which just rips me open, like Prometheus: always healed the next time I’m with Ben, Max, or teaching my class, or changing plans just like that, or letting lights stay on and handbags stay open. I’m always freshly lacerated when I think of why.

I have the pressure of tears behind my eyes and my brow has been furrowed most of the late afternoon, my lowest time. I think that what happened was I went for a run and as I rounded the two-mile point, “Sweet Melissa” came on, which was the first song on my Labor Tape. I know I’ve said this before. That song, that song. It is the song that reminds me of my early labor, the Braxton-Hicks, the warm-up contractions prior to giving birth to Nat. I wondered if I was having a girl, contrary to all signs. I had seen him in a dream — laughing, with bright blond hair, in my sister’s bedroom in my parents’ home in Connecticut — yet I still thought I was having a girl. We never had the later-term ultrasound, I don’t know why. We had so much confidence in my baby’s health, and mine.

So Sweet Melissa, in late October, is my Nat song and my Nat time of year. His birth day was November 15, 1989.

I ran around that bend and I felt my face clench into misery, even with the bright blue sky and the light rhythmic breathing of a perfect run. The tears I cried mixed with my sweat and I kept clearing them away because I didn’t want people to see, and wonder about the idiot who cried while she ran.

Just like maybe some of you wonder about the idiot who just can’t get over that her firstborn moved out. Mawkish, maudlin me. But I don’t care. I still worry. I still hurt. I still think of things he might be thinking. And I don’t know, I don’t know. This isn’t about evidence, reports from the staff, his teachers, my own eyes. This is in my stupid fat unseeing heart. I don’t know if he’s wondering if he’ll ever live fulltime at home, ever again. If he’s wondering why I gave him so little warning about moving out. I was so selfish, thinking only that I wanted to preserve the peace and not get him all anxious and aggressive again. I am so afraid of the return of the aggression. The absence of the aggression means that so many doors are open to him. He can go anywhere, outside, do anything, with others, and it seems to me that he likes that, the way he smiles when I drop him off at Social Group. Those are his dudes, his peeps.

But I don’t want to think about the aggression. I can’t stop thinking about Nat and how it still hurts, the parts I didn’t get right for him. And just missing all the parts, all of him.

Saturday, October 25, 2008

Independent Mister

Way back, when Nat was a baby, Ned would give him nicknames depending on his current developmental phase. The nicknames would show up whenever we had to type in monikers on whatever computer game we were playing together at the time, or as log-ins. We had Stand-up Natty, because he loved to push up from our laps and stand on his chubby bow-legs. (All the mothers from the older generations were afraid that he did this. They would worry that he would have bow-legs when he grew up! Turns out you can’t predict what you will have to worry about in the future; Nat’s legs are now Platonically straight.) Thus we had Crawling Mister; Walking Mister; and Talking Mister, when he started to babble.

Then came the chaotic years where so much was happening (or not happening) that we turned to other nicknames to express our love: Baby Delight; Sweet Guy; Natty Boy… Most of these have continued on into his near-adulthood; not because he is a baby but because I just do that with my boys. I baby them as much as they allow (none of them allow much but they do allow the nicknames. They understand the kind of Mommy they have {Ned calls me a “Shmommy,” based on a nickname that he gave to baby Benji, during the phase where we were calling him “Shmengy Polka,” and then “Shmeng-a-leng-a-lei,” and then the terrible but hilarious, “Dr. Shmengele.” Being a Shmommy is more special than a Mommy because it means you are Shmengy’s Mommy, very soft and squooshy in personality and all else.}) and so they tolerate this.

Thursday night I spoke to Sarah at Nat’s House for the evening update. The way that works is the House staff calls me first and talks to me about various salient points of Nat’s day, and then they have him call me back for our nightly conversation. Sometimes they put the phone on Speaker and help him answer questions (I have come to realize that I prefer the phone not to be on Speaker because it is harder for me to hear him and I think it makes it extra noisy for him, so he spaces out. I’ll have to tell them to take the phone off Speaker once they know that I’ve picked up. It works better for Nat and me if I can help him answer me.). The best conversations I’ve had with him, however, are off Speaker, just him and me, as I described here.

I had another great talk with Nat, similar to the other night’s, where Nat was focused and very “on.” Then when I spoke to Sarah she told me that Nat and K, another boy at the House, played Connect Four together. Apparently K has a cold and kept spacing out. Sarah told me that Nat noticed this and didn’t seem to know what to do about it. Sarah explained to him, “Nat, you can remind K…”

So Nat tapped K on the leg and said, “Excuse me, K, it’s your turn!” and K snapped out of it and resumed playing.

What I like about the way his staff and teachers do things these days is that they don’t use prompts so much as reminders. They don’t give him words to parrot; they give him cues and reminders as to the social rules, or choices of things he can say or do. His socializing is not robotic and it has moved beyond his scripts, though the scripts helped lay the foundation for the basics of responding in conversations. The generalization from scripted language to independent language really can happen given enough time and consistency. It took years, but I think Nat has grasped the concept, as long as we all help him practice and internalize it.

Now that he has the formula for most conversations, he puts his responses together using his own word choices. For example, just now he came downstairs with just a thin longsleeve T shirt on his thin, long frame and I, swaddled in PJs, cardigan, Ned’s shirt, and an afghan, said, “Nat, if you’re cold you can put on a sweatshirt.”

“Yes,” he replied.

“Nat where’s your sweatshirt?” I persisted, because he had not gotten the sweatshirt.

“You have it at Allerton Shreet.” And he walked away from me. Meaning, yes, the sweatshirt is here, but I don’t need to go put it on, stop bugging me. And actually, this is far more than I get out of Max, who will just shrug and grunt, “It’s fine.”

Friday, October 24, 2008


Halloween is our family’s most important non-Jewish holiday. Oh, well, of course we do enjoy going to Ned’s family in New Hampshire for Christmas dinner, and we love Thanksgiving and our birthdays and Mother’s Day …. Well, anyway, we just love Halloween.

If all goes according to plan, Nat will come home at 3:45, leaving me just enough time before that to go with Max and Ben out to West Roxbury to the iParty store, where you can get all your Halloween needs met. Oy, do I have such Halloween needs! I am the HallowQueen (I must credit the Gay and Lesbian Alliance at Brookline High School for that perfect title!).

I have a whole vision of what we are going to do with our front yard/porch/entry hall. Max and Hannah want to hand out candy this year, which leaves me free to go with Natty and B. I already have those purple light bulbs that give your space an eerie glow. I thought I would by those battery-powered pumpkin head lights to stick into the lawn to guide trick-or-treaters and illuminate our display. Benj wants to take the skull I bought a few weeks ago, and the old plastic bones we have used over the years, and lay out the whole skeleton near the gnarled old apple tree in the front yard.

I am usually in charge of The Spiders. We took one of Ned’s larger juggling balls and dropped it into a white stocking of mine (the kind you wear with garters) and suspended that from the porch so that it looks like a giant egg sac! And then we stuck the little spiderlings all over the thing and then put a huge spider somewhere up at the top to preside over it all.

Ned hangs up his father’s bat, which is very life-like (you shouldn’t know from it, as my materal grandmother used to say). He hangs it so that when a kid opens the storm door, it swings down!

Nat, Max, and B do the spider webbing and I usually hang up a fake crow I got while back from Martha Stewart’s catalog, of all things.

Halloween has always been one of the best days of the year. I can still remember each boys’ first Halloween. I just can’t wait, and that’s all I’ve got to say.

Wednesday, October 22, 2008

Sprint Happens

Wait ’till they get a load of me [us]…
–The Joker, in Tim Burton’s “Batman”

My long-legged thoroughbred has made my heart sing again! The Director of Residences at Nat’s school has been running with Nat and another kid for weeks now, working them up to three miles. No surprise, right?

Well, today Nat was signed up for a 5K race, on November 22. My Sweet Guy is going to run to raise money for a wonderful cause, Best Buddies. Nat, knock wood, is growing in leaps and bounds, literally and without Early Intervention, way beyond the alleged closing of that tiny, cruel window known as Birth – 3, or the period of The Elasticity of the Brain.

Folks, Atypical Development means just what it says. Any doctor or professional that begins a sentence about any of your children with the words: “He will never…” Tell them to see me. Better yet, I will introduce them to Nat.

Tuesday, October 21, 2008

To Life

To life, to life, l’chaim
It gives us something to think about
Something to drink about
Drink, l’chaim, to life!

The number 18 means “chai” or “life” in Hebrew
–Jewish lore

Two things in one night:

The EKG was, after all, okay. A small scar near her heart, no problem. Knock wood, Thank God.

And this.
Last night the phone rang as it usually does at around 6:30. Here’s what ensued, according to my intuitive memory:
S: “Hello,”
Nat: “Can I speak to Mommy or Daddy.”
S: “Hi Nat! It’s Mommy!”
N: “Hello Mommy. How are you?”
S: “I’m doing great, Natty! How are you?”
N: (pause) “Good. (pause) What did you do today?”
S: I went to the supermarket.
N: Yes.
S: What did you do today?
N: Some programs, treadmill
S: Oh, great! Nat did you go to work today?
N: (pause) “You did some work.”
S: Nat, where did you work? Papa Gino’s or Meals on Wheels?
N: (pause) Papaginos.
S: Did you like it?
N: (pause) Yes.
S: Nat, what did you eat for dinner?
N: Parmes, chicken, stuffing, potatoes.
S: Oh good! Nat, I am making Thai food. But I have to wait because Daddy isn’t home yet.
N: Yes.
S: Nat, are you going to take a shower now?
N: Yes. Bye
S: Nat, are you hanging up now?
N: Yes.
S: Goodbye, Darling. I love you.
N: Goodbye.

18 years is a long time to wait, but I got my reward last night.

Monday, October 20, 2008

Unleash Your Mother Tiger

Okay, my darlings. I am getting close to the finish line. I just wrote the last sentence in the book! I write out of order; I write what I want to write when I want to write it. I have to have faith that I will get to everything I need to, and so I have.

Now I have to write the chapter on Us and Them. Our experiences with our kids out in the world, and how we handle it. How do we strive for contentment and happiness, given the responses autism gets in the world? Have you had good experiences? Awful ones? I want to hear both kinds, whatever you got. Strategies for handling the nosy clueless wonder in the supermarket. Or the doesn’t-get-it parent. The neighbor who shuns you because maybe autism is contagious. Or the school administrator, or the insensitive (or wonderful) doctor.

Does your spouse/partner help you, back you up?

As always, give me your name, city, state, kid’s Dx and age. I will likely publish what you send me so make sure that is okay with you/those in your life!

Get it all out! It will feel so good!

Sunday, October 19, 2008

Post-Birthday Letdown

I’m proud of myself. Today felt like a real fragile day. I have what Linus Van Pelt called, “Post-Birthday Letdown,” because Oct. 18 is always so sugary high, that there is no way Oct. 19 can be good. It is my crash day.

So, in anticipation of that, I worked out for 45 minutes, came home, gave boys lunches, and then napped. I was face down in Fat City. I woke up not wanting to face life. Or my face, which was pressed with a with a big pillow crease, diagonal line from lower lid to ear.

I told Ned I wasn’t doing anything. He was concerned. I had been planning to go to Najmat’s (and yes, that is her real hair; no hair extensions for my friend Naj) second session of bellydance classes in Cambridge, but I just felt total inertia. I also was supposed to go to an art studio opening of “Inspiring Women of Brookline” scroll down for a familiar face) in which my portrait was one of the featured bunch of ladies. Champagne, etc. But I just thought, “Blah.” I don’t know why; it just happens to me, something to do with the outer structure of my nerve cells and how quickly they spin. Seriously.

Ned said, “But Sue, everytime you go to Naj’s class you come home so psyched. You say, ‘Ooh, Neddy, looked what I learned!’ and then you do this…” And then he proceeded to bellydance. My Ned! Doing a side hip eight! With arms a la John Travolta in Staying Alive. Well, that just beat all. I had to go after that.

So of course the moment I set foot in Green Street Studios, a true down-and-dirty sincere and extremely cool dance studio, with huge wall-to-wall mirrors (bless its funky heart) and perfect squooshy floors.

Naj started in with snake arms, really breaking them down. If you think snake arms is easy (are easy?) you should try it with Najmat the slavedriver. You go as follows: arms out, elbows slightly bent, lower belly tucked, upper belly pulled straight up (as Najmat says, “the Girls must be happy; lifted way up”) butt tucked, legs together, always together: bellydancers never spread their legs, no matter what James Bond movies show you. My teacher says: “Your thighs must love each other.” Right Arm goes shoulder up, then elbow, then wrist floats up; then wrist caves but fingers go up as the arm drops, shoulder, elbow, wrist, hand as if your hand is painting the wall. All with the posture unchanging. As that arm gets to your hip, the left begins its slow ascension. Voila, un serpent est ne.

Then, after our arms were burning like an MF, we switched to hip circles: tiny interior; medium, and large. I learned how to do the big hip-circle-with-hair-flip! We took our hair out of our barrettes and we all flipped our heads down to the floor as our torsos circled to the front, flat back, and down when the head, hair sweeps floor, and then flip! up you go with everything tucked and up, and the hair shakes back from your eyes. It is magical and playful.

I felt so good after that that I did go the Inspiring Women show, and saw lots of gal-pals there, had some sparkling wine and candy corn, and headed home to an empty house. The boys are at the new Apple Store downtown. Enjoy yourselves, my darlings, because I’m going to soak in a lavender water tub! When Ned comes home I’m going to say, “Hey! Looked what I learned in class!”

And show him how it’s really done.

Some Birthday, En Somme

My birthday was great, start to finish. All my boys were home. We opened presents when I first got up. Nat did the unwrapping. Ben sent me on a treasure hunt with clues, that ended up with a picture he had drawn for me, wrapped up in red ribbon!

And Max bought me a hot pink foam Apple carrying case for Twilight Princess, so that Her Highness is protected from when she gets carried from place to place (she’s really only a laptop but don’t tell her!).

Shared a raisin bagel with Nat for breakfast. I ask you: what could be better to a Nat- and – carb – deprived Mommy?

Ned and I went to see Rachel Getting Married, a very intense movie about family relationships seen in the context of an upcoming wedding. Incredibly well done, especially the acting and the character development. Beautiful, if a bit too long in parts. I have not enjoyed a movie in the theater in this way for years. We went in the afternoon, even though the weather was glorious, to make it an even more decadent event.

The dinner out was also a dream: we went to The Hungry i, an old romantic quirky place in Beacon Hill. Feta and fig salad, French onion soup with Roquefort dumplings, moist and dense bread with soft butter, and I had ratatouille with polenta and ricotta. Ned had rabbit pie! We shared a piece of sweet walnut pie and a bottle of dry Riesling. Then, the piece de resistance: a pounder bag of M & M’s from CVS as we rode home on the T.

Friday, October 17, 2008

Which One’s Pink?

What a day. Mostly good, because there was so much pink involved. I got a sparkly pink pedicure, and pink-tinged French manicure. I wore my new pink Anthro sweater, a tiny little thing with silver flower buttons. Tonight I will dance in pink.

I am preparing for my birthday. But one bad thing, not at all pink: I got into a red rage with a close friend. Terrible.

I was on my way to pick up Nat, and this thing just erupted, all while on my pink cell phone. I was pink-cheeked and swollen-eyed by the time I got to the House. But seeing Nat made me feel much better. That, and listening to Pink Floyd, Dark Side of the Moon. A friend of Ben’s had borrowed it (!) and gave it back to me at pick-up at the school. My Arabic CDs were in my Baby Bellies bag, so I had some slots left in my CD player, so in it went. My car filled with unbelievable music. Nat LOVED it. I played the song Dark Side three times. All that you love, all that you hate… All that you slight, and everyone you fight…Went along excruciatingly, flamingly well with my recent argument. Sigh.

So when we got to the song, Up up up up up up up up And Down down down down down down down down… And after all, we’re only round and round and round and round and round…
I was enunciating the words markedly so that Nat would really hear them. I had a feeling that he would especially like that one, because the words are so discernible and the concept is so stark. I was right. “You want to hear this, Nat, or should I turn it off?”

“You want to hear this.”

“Who wants to hear this?”

“I want to hear this.”

I. It’s something that is so necessary to know, and so difficult to teach. But my darling has finally mastered it. It’s like my pink Grandma used to say (the one who always wore pink, and who called me, “Darlink.” The fat one who was a Taurus and loved me to death. The one who, miles away in Florida, while near death, heard me saying, ‘Don’t die, Grandma. It’s too soon, too soon.’ And she didn’t. She gave me the chance to come down there one more time and say good bye.)

Pink Grandma used to say, “Nothing’s wrong with him. He’s just a little slow.” And when I think about how happy a guy Nat is, where just a ride in my car makes him grin his cute head off, and there I go, zooming around, hanging up on people, crashing into things, making so many mistakes in my life, I think, well, maybe slow is a really great way to be.


Got not much to say. I think a lot about teaching these days, but I’m afraid to say too much in case any of my students actually read this blog. The thing that is fascinating is, no matter how much I plan for a given lesson, there are always so many questions, and things I did not consider! I kind of play a game with myself, trying to psych it out, and figure out what they are going to pick out that is unclear or needs to change.

Yesterday was the midterm exam. I spent about an hour designing my one essay question. Me, the writer, just sitting there deleting and re-writing, worrying and wondering if this was just right (the format, the clarity, the extent of material covered). I thought about the length, the sources. I thought about how to make it fair but tough.

So I get there with my brilliantly spelled out essay question, I even put it on the board as I always do for those who need to see it in a different way from just on paper, I left 5 minutes at the beginning to read it through with them.

Wouldn’t you know it? There was question after question. Also, there was so much renegotiating! “We can’t do the group we already wrote about?!” and “Three pages single spaced or double? What?! Single is SO long!!!” and on and on.

All good points. I had to think and rethink my entire test. I stuck to my guns on most of it, but for things that made sense their way, I allowed it to change.

That is how I teach. I go in with a lesson plan and in-class work, but there is always something unforeseen. Teaching (at least for me) is dynamic and ephemeral; I always have to think on my feet and process quickly, making sure that I am 1) answering their concerns; 2) adequately covering the material; 3) engaging their attention; 4) maintaining my credibility; 5) keeping them on-task. And on and on. It is exhausting. I don’t know how “real” teachers do it, with 8 periods a day and more than 19 kids in a class.

My kids really want to be there. They seem to be extremely motivated, even though many of them have rather complicated lives, whether they are from another part of the world, or work full-time(!) or struggle with one thing or another.

I just adore them, and I don’t know when I’ve had as much fun. But on Tuesdays and Thursdays, I just collapse by 5. Lots of take-out this year. Utterly delicious, mind-consuming days.

Thursday, October 16, 2008

How Do You Have Any Fun?

Now that I am finished with my class’s midterm exam, I can go back to my book. I thank all of you who wrote me such wonderful things about your lives, and your children! I have learned so much, and I have been trying to incorporate most of what I’ve received.

The chapter I am most interested in now is about you, yourself, and your happiness. How do you (the singular form of “you”) find ways to enjoy yourself, sans enfants? Without children, without partners? What is your most fun thing to do as an adult, when you get the chance? Even if it is “daydreaming while my kid eats sand,” that is what I want to know. There has to be something you do, even for a few moments, that makes you feel good and strong again.

For example, I talk a lot about discovering bellydancing and how that has made such a huge change in how I feel about myself, my life. It is an escape that I can plunge into, just by putting on a sparkly skirt and some Egyptian pop music.

So I want to know what other autism parents are doing, that is, just for themselves. Do you write? Are you a poet? An artist? An actor? A blogger? A runner? A cook? A reader? A polker player? A People Magazine fanatic? A bathroom-scrubber? A phone-gabber? Think, all of you, and tell me how you have figured out what makes you smile (that is NOT about your kids!!!)… Okay, even if the thing you do is about your kids, tell me that!!

What do you do for yourself when you are not doing your autism parent thing?

I can’t wait to find out!

Tuesday, October 14, 2008

Joy In the Morning

1) A new jar of peanut butter with the swirl smiling innocently in the smooth middle, and getting to be the first to stick my knife into it.
2) Another bright yellow and orange and green mid-fall morning.
3) Little boy still asleep and still little.
4) The gigantic confident man who has replaced my other little boy, living his entire secret life behind a closed door covered with stickers and hostile signs leftover from pre-adolesence, also still asleep.
5) Lesson plan finished and thorough.
6) The absence of pain in my right foot.
7) Head clear and no longer cloudy with sad.
8) Coffee with snowy sweet foam
9) Anticipating Baby Bellies this afternoon
10) Laughing with Ned at something bizarre on YouTube, from our childhood.

Monday, October 13, 2008

Sloppy Normal

Soda cans and dirty plates lie lazily in the sink,
enjoying their own sticky odors like filthy children
joyful three days without a bath
A breakfast of English muffin, not the stale sameness of Big Bird yellow eggs
because I felt like it.

Your drawers are left open
where you crammed your clothes in, so that your pants hang outside
I can see your long legs filling them.

And the TV cabinet is closed
The clashing colors of your videos are now hidden
Peace to my eyes, sadness to yours.
My handbag sits with open mouth and zipper teeth gaping
hungry and stupid, waiting to be fed
Like us, bright shiny family of four.

There is freedom with you gone.
My house, my self, can relax
But the languid ease of your absence
The sloppiness of Normal
Is the hardest thing I’ve ever had to bear.

Something Else

“He looks just like you,” the woman said to me as we stood on line at the Dunkin’ Donuts. I was having that lumpy, bleak, empty feeling I get when I’m taking Nat back to his House, which was why I was delaying that moment at the Dunkin’ Donuts. The cloying coffee smell did not make me feel any better.

“Yeah, a blond Me,” I mumbled.

“How you doin’?” she asked Nat.

I prompted him to answer. “Nat, she asked you how you were doing.”

“I’m good,” Nat replied. I patted his arm, waiting for that awkward moment when she or her daughter to would notice Something Else about Nat.

She turned to me and said, in a lowered voice, “Is he autistic? My mom worked with autistic people, so I’ve been around them all my life. They’re human like everyone else, you know.”

I bristled a little when she said that but then I could see her eyes tearing up, and her tone was loving and warm, so I realized she only meant this kindly and reassuringly.

“I know,” I murmured, smiling at her and at her teenage daughter, who had been staring at Nat. I could see that I did not have to worry about what her stares might turn into once she took a gander at Nat bouncing around and flapping his hand, whispering to himself. I adore him the most when he’s doing that, because then I know he is happy and comfortable; but others often don’t see it that way.

This woman did. We talked for awhile (the line was long). I really liked her. She told me that her Blue Cross Blue Shield, where she worked, had hired several autistic people when they had graduated from Nat’s school (nearby). I never thought I’d say this but, “Hooray for an insurance company!!” This gave me alot of hope that Nat, too, would be able to hang onto his job once he left his school in three years. They already love him there, because he is so thorough and complete in his work.

She got her coffee and left, shaking my hand and saying it was so nice talking with me. When it was our turn, the woman behind the counter shouted, “Next!” I spoke up, ordering Nat’s blueberry muffin for him, as I always have done his whole life.

The guy at the cash register must not have realized we’d already been helped, though. “What can I get you?” he asked Nat.

“Blueberry muffin,” Nat answered before I could.

“Great job!” said two voices at once: mine and the woman behind the counter.

I smiled at her, realizing that she probably knew him because this was likely the Dunkin’ Donuts-reward mecca for his entire school. Or maybe she knew Something Else about Nat, and she, too, had a clue.

“How you doin,’ Buddy?” she asked Nat.

“Good,” he answered.

“Great. You take care,” she said to him as we walked out.

I left with a full heart and a tight throat because I could see that Nat really does take care of himself, and just as wonderful, many unknown others take care of him, too. That Nat. He really is something else.

Sunday, October 12, 2008

Early Cake

My birthday is not until next Saturday but my family could not be here on the 18th. Since they all had a three-day weekend, they came up on Friday. Nat was also home for the long weekend, so it was a really satisfying and complete gathering.

Ned asked me on Thursday what we had planned, and then he answered for me: “Oh yeah, when your family is here, all you guys do is exercise, eat, drink coffee, and talk!” Sounds good to me. That is my idea of a perfect weekend.

And exercise, eat, drink coffee, and talk we did. I went for a three-mile run with my (71-year-old) Dad, who actually ran four miles, feeling especially energetic. That’s Dad for you. Mom, Laura, and Nat went on a long walk, ending up at Starbucks for — you guessed it — more coffee. Turns out Nat loves the way Laura drinks her lattes: nonfat milk, no sugar. Benj and Kimmie stayed home in their own little cousins cocoon, and Ned played with them when he could, but his (unnamed) laptop allowed him more access.

For dinner the adults (so to speak) went to my favorite restaurant, and ate until we were bursting out of our clothes (well, I will just speak for myself. I was trying to wear my beautiful red silk shirt from Anthropologie that I got for my Brookline book party at Emily’s, and suffice it to say, I ain’t no 17 inches no more.) Just lovely (the meal, that is).

The next day, after exercise, we walked into Coolidge Corner to my favorite cake store, Party Favors, and I picked out 9 fabulous cupcakes, with the famous inch-thick frosting. We all loved them except for Laura, who doesn’t like chocolate! She got a pecan tart, and shared it with Nat, who had also had fudge and a cupcake and probably gained not an ounce.

So good, and gorgeously decorated. See for yourself.

Thursday, October 9, 2008


Finally, some public accommodations for autistics! Sensory-friendly movies! I am so psyched about this. Although there are no theaters offering this in Boston yet, there are some all over the country. What makes this so great is that it is a sign of growing awareness of other needs in society.

This way of thinking is also an incentive for families to get outside and live their lives, with their families intact. The more people who “get it,” because they are exposed to disability and difference, the more enriched all of our lives can be. Less staring, less ridicule; more welcoming, and more learning.

What I’d like to see is more of this kind of common sense everywhere. I remember when we took all three boys to see the theater production of the Lion King, and when I mentioned Nat’s autism and possible noisiness, we were given the option of buying tickets that were accommodated to any disability. I don’t remember if they were special seats near aisles (for hasty tantrum-driven exits) or special performance days. Although we didn’t avail ourselves of that option, we felt more welcome there because they had offered that. (By the way, I was so proud of them that night — they were so well-behaved and because they so clearly enjoyed the show — that my head nearly exploded.)

Now I’m thinking of taking Nat to see the Bellydance Superstars perform at the Arlington Regent Theater in early December when they tour again. (Sonia, pictured at right, is giving a workshop here at that point and I will take it. Sonia specializes in the art of the drum solo!!!) As you know, the BDSS are my favorite BD performers, and they put on a gorgeous show, with music that transports you. It’s amazing how I don’t even think about “will he be okay? will he need to leave?” anymore, knock wood.

To get tickets for three to the Bellydance Superstars: $60

To be at a point in the life of our family where I can take Nat anywhere he and I want to go: priceless.

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