It is the time of year where you try to count your blessings. But no matter how positive a person you are, this is not always possible. Sometimes I am left counting my burdens instead. I was raised to be an optimist, or at least to look at the bright side whenever possible, and if that was not possible, to make a joke. This is how my Jewish parents approach life: nothing is so terrible that you can’t laugh at it a little. In Yiddish this gallows humor is called, “laughing with yashtikas,” literally translated, “laughing with pins.”
Recently I had a day for probably more pins than laughter. I had to drive my son Nat to school because he had a doctor’s appointment. His school, a special education behavioral program for children with autism is about 40 minutes away. I took my mother and father with me so that they could see the brand new facility and meet his teachers, whom I adore. At the school, we were greeted by an enthusiastic program director, Nat’s smiling teacher, and helpful receptionists. We chatted with his teacher while Nat strode ahead, like he owned the place. “He’s doing so great,” she said to us, which we knew already, but loved to hear.
But when we opened the door to the classroom, my happiness fizzled. All around me were Nat’s classmates, flapping and staring off into space, or stammering and trying to speak. Even though these were mostly 16-year-olds, there were toys and beginner books spread over the tables. One girl was sprawled on a gym mat, taking a break.
As I looked around, I found myself wondering why, after all these years, was it still so hard for me to adjust to the sight of disability? Why was my first response one of sorrow? Even knowing what I know — that Nat is doing so well; that his teachers are wonderful; that the school is top-notch — I dip below the surface back into my oldest feeling as a mother: loss.
But I have learned, over the years, to force my way back. I swam against that tide by keeping my eyes on Nat, pacing around the room with a huge grin on his face, getting out his work to begin his day; utterly happy, completely competent here in his class. I told myself that he seems out of it, but is not. The other kids in here are no different in that way. I know them, after all: J might have Down’s Syndrome, but once you start him talking, he is aware of everything going on around him. R is huge and frowning, a little scary to look at, but he comes over to us and shows us that he got “all checkmarks” today. There is D, screaming as usual, but you catch his eye and he’ll give you an age-appropriate leer.
They are all just kids. They’re doing okay. Really.
It’s just the rest of the world that is not.
As we walked out, back to our car, we talked about how well Nat was doing. I said to my father, “You know, if he were – well, normal – he would be ‘big man on campus.’”
My father turned to me and said, “He already is,” and smiled. We drove home, smiling, with just a little bit of pins.
Warning: If you take the following seriously, then you probably shouldn’t be reading my blog…
BiPolar Express: The story of a mother of three, trying not to succumb to housewifery, trying to have a bit of fun while she’s still “youngish,” trying to have a writing career, all while maintaining sanity.
Chronicles of Nerdnia: The ShyOne, the Bitch, and Her Wardrobe: She’s hopelessly talkative, hot-tempered, impulsive; he’s a quiet geek to the n + 1 degree. They fall in love, buy too much, have a lot of kids, and 23 years later, what do they talk about?
The Family Stoned: A family bakes too much over a winter vacation and goes around in a perpetual sugar high. High-jinx ensue.
Talkback Mountain: Comedy of a snotty teenager, pissed-off mom.
Kaput-e: A 40-something suburban mother turns to a life of crime due to the utter boredom of late December in New England.
Memoirs of a Goisha: A Jewish woman thinks back on her days when she impersonated a Shiksa at a swank liberal arts college in the Northeast.
Bling Kong: The horror story of a materialistic woman trying to live within her means and then exploding with an impulsive shopping spree that blows up her credit card balance.
Botox that Line: A thriller, coming-of-middle-age piece, about an aging hottie contemplating the use of cosmetic surgery in order to hold onto her fading youth, all the while knowing that her adoring husband will leave her if she does it. Will she or won’t she? Suspensful and twisted.
The Wringer: A heartrending day-in-the-life romp of a woman taxed to the limit during a cold, empty stretch of time sometime after Christmas, longing to go back to the days when she was too busy shlepping kids to Special Olympics practices, playdates, therapy, and the like.
Malice and Vomit: The Curse of a Weird Habit: A family tries to handle their dysfunctional feelings by employing further dysfunctional behaviors of overeating and becoming ill.
I swear I am not a hausfrau, but there is something about school vacations that just brings out the Martha in me, or at least the Murtha, except I’m not getting outta Iraq, I’m getting out my cooling rack! (Okay, what do you want? I have been holed up in this cold old house for days!)
What am I talking about? I am talking about baking with my boys. Nat, in particular. What happens is, I sit here waxing witty on my laptop, while watching Nat walking and whispering, walking and whispering. While it adorable and sweet, it also makes my narrow little neurotypical mind crazy! I can’t stand to watch him stimming for too long, no matter how much I think he likes it. So I jump to do the one thing that he likes to do, as much as I do: baking. And the best thing we can bake together is a gingerbread house.
A gingerbread house, you say. Now I know she’s nuts. Well, yes, but that’s not why. It is that making your own gingerbread house takes just the right amount of together-time and tastes much, much better than any store-bought kit you can get. You can make it in stages, and control the amount of time you spend on it. So, today, we made the dough, and that’s all. Took about 20 minutes. Here’s my recipe, btw, with all the parts that Nat likes to do added in:
Gingerbread House Dough*
5 cups white flour: Nat pours the flour and loves to watch the clouds of white shimmer down into the bowl and also float upwards in the light. He loves to touch it where it dusts the counter, too.
2 sticks soft butter: Nat loves to squoosh it in his hands.
1 cup molasses: Nat loves to watch it pour slowly and then to lick the measuring cup (as do I).
1 tsp baking soda: Nat levels off the spoon by rubbing it against the lip of the box, very satisfying to get a sharp edge on the powder.
1 tsp salt: I do this, because it’s boring.
1 tsp each of ginger, cinnamon, nutmeg, cloves: Nat loves to smell each spice
1/2 cup hot water: me, boring.
Knead it with your fingers, fold it into a ball. I then give Nat a huge chunk to eat. I wrap the rest with wax paper and then saran wrap, and chill for a few hours at least.
*Thanks to Kristina Chew, here is the gluten-free version for those of you with dietary issues.
Saturday, when we’re all home, the whole family joins in (if we can get Max to stand up and walk away from the computer). We have a house template that Ned has drawn, and it looks like a miniature version of our house. We roll the dough out flat and thin, 1/4 ” is what we aim for, and it has to be very cold or it will get sticky. Ned slices the pieces as precisely as his little mathematician’s heart desires; I stay far away because if it were up to me, I would just mold the thing with my fingers and end up with something that looks like a gingerbread cave! We bake the pieces on a greased sheet, maybe even parchment, 350 degrees, about 8-10 minutes. Keep an eye on it, because you want it a little pliable, rather than too brittle and overcooked.
Make the icing. (10 minutes, tops)This is very important, because it is your glue. This is the part of the exercise that I recommend is for those who can laugh at themselves, because it is so stressful balancing those $%$! pieces of house together that even the happiest couples can head towards the Precipice of Divorce. Prior to assembly, make the icing, and then, below, the candy glass for the windows.
Royal (Pain) Icing
1/3 cup water
1/2 tsp cream of tartar
2 1/2 TBSP meringue powder
Beat until foamy
3 1/2 cups confectioners’ sugar — add a little at a time (again, a job for someone like Ned, not for the impatient types like Nat or me)
Candy Glass (for the windows) You will need a candy thermometer. (another 15 minutes)
Boil 1 cup water, remove from heat
Add and stir until dissolved: 2 cups sugar, 3/4 cups light corn syrup, 1 TBSP butter
Return to heat. When boiling, cover 3 min. so the steam can wash down the crystals. Uncover and cook at high without stirring, to 300 degrees. Take off heat, let bubbles subside. Very carefully pour windows onto flat house pieces, prior to assembly.
After house is assembled and has set, you can think about decorating. Warning: at this point, you will be so sick of the thing you will want to get out a hammer and smash it into bits, before turning the hammer on yourself.
I like to use Hershey’s bars broken up for the shutters, gummi bears for the inhabitants, Droste pastilles for roof tiles, Twizzler porch arch and Twizzler gutters, M &M;’s for Christmas lights (which we do not have on our house, but neither are we gummi bears). All of it held on with the frosting, of course.
We even have a miniature lighting system that we put inside, so that the windows are lit!
This Chanukah brought new meaning to my phrase, “unexpected gifts:” pillows. Tonight, Ned surprised me with the gift of a fantastic new pillow. This is not as shallow or stupid as you are beginning to think. At my age, you cannot take a good night’s sleep for granted, and lately, sleep has been eluding me. But last time I went to my parents’ house, I slept on the most marvelous pillow (the same brand that Ned just bought me) and I had no aches, no stuffy nose, and possibly fewer face wrinkles when I woke up.
It is very easy to buy me gifts, consumer that I am. It is very difficult to buy Nat gifts, however, because we don’t really know what he likes, other than candy and Disney videos, and he has all of them. To be more accurate, we do know what he likes (pacing, talking to himself, a lot of spices on his food) but these things are difficult to put into a box.
Nat likes pillows; likes pillows as only a sixteen-year-old hormonally charged boy can like something. Recently Ned took Nat on a little jaunt to Walgreen’s for a few things, like wrapping paper and candles for the menorah. While in Walgreen’s, Ned noticed Nat fingering the small square pillows that lay piled in a bin near the cash registers. These pillows were neon bright and very squooshy and smooth. Nat caressed the pillows, smiling. Ned asked him, “Do you like the pillow?” And Nat answered immediately, “No like the pillow!” As if he had been caught with a Playboy magazine.
A few days later, as we looked at the tiny pile of presents for Nat, compared to the mountainous ones of his brothers, Ned and I had a desperate and bizarre conversation (“Should we get him a pillow?”) It seemed a little unsavory, somehow, almost like getting your kid an inflatable doll. But maybe it is easier to understand our feelings if you think about our autistic teenage son who has almost no friends, and certainly has never had a girlfriend. Nat, God bless him, has not yet put it all together, the feelings in his body and how they could possibly relate to other people. I guess I have to hope he never does, although that is sad, too.
But to be honest, we did not feel sad when we hit upon this pillow gift idea. We felt like geniuses.
At Ned’s suggestion, I bought Nat the green pillow and wrapped it up.
That night, Nat saw the big package and zeroed in on it immediately. He touched it, and his fingers guessed at its contents. He tore the wrapping paper off with a gusto I had never seen in him. His eyes lit up at the sight of the bright green, soft square. He grabbed it and ran upstairs to his bedroom.
I think if he could have, he would have said something like, “Don’t wait up for us, Mom and Dad!”
One of the best presents I got this year so far for Chanukah was from my sister-in-law, Sarai: the new DVD Concert for Bangladesh, George Harrison’s event from 1971. Bangladesh was the first concert of its kind, the Bob Geldof-Bono type of thing that raised huge sums of money for a worthy cause, although as far as I know, autism research has yet to attract the attention of these rock stars; if anyone can put me in touch with Clapton, Bono, and the like, don’t hesitate to do so! 🙂 In this case, the worthy cause was the starving populations of Bangladesh. Unlike most of those other money-raisers, and in true George Harrison style, the Bangladesh musicians did not take a cent for themselves; it all went to the people of Bangladesh. In the interview at the beginning, Harrison is asked, “Of all the many important causes out there, why did you choose this particular cause?”
Harrison replies, “Because a friend asked me.”
The first time I heard this album, I was 9, and my father was playing it (as an LP, of course) on the phonograph in our basement playroom. I remember looking through the liner notes, and coming across a photograph of what to my pre-pubescent self was the most beautiful man I had ever seen. (Why don’t men wear their hair long anymore, or grow beards? Of all the styles that have come back from the ’70’s, men with long hair is the one I would most like to see revived.)
I played Dad’s record over and over, memorizing eventually even the scratches and jumps. As he always did, Dad explained the Bangladesh cause to me, and made sure I listened carefully to the lyrics by singing them out himself. Dad had similarly introduced me to the Beatles and Simon and Garfunkel, as well as the Broadway show Hair. An idealistic history teacher and then a high school principal who fought dress codes, my father was probably a closet hippie, who imbued me with the sense of that era: the anti-war sentiments, the need to question authority, the freedom and creativity to be whoever you are, and the desire to help those in need.
Bangladesh has remained in my head as one of my all-time favorite collection of 1970’s performances. Whenever I visit my parents, I get out those liner notes and look at the full, album-size images of Clapton and company (by now I have the CD, but the liner notes are tiny, to go with the size of the jewel case). I bought this new concert DVD and gave it to Dad for Chanukah, by the way.
I thought I knew this album by heart, but seeing Harrison, Dylan, and Clapton performing at their height, and all together, is a tremendously moving experience. I don’t know how I missed this, but Clapton is playing on every song, mostly as backup! Harrison comes out and humbly starts talking about his mission that night, occasionally flashing that unmistakable ex-Beatle grin, just as familiar when peeking through a ZZ-Top beard. In Beware of Darkness, probably my favorite son on the entire album, you can watch Harrison’s expressions as he sings his lyrics, and you can better appreciate their meaning:
Watch out now, take care
Beware of the thoughts that linger
Winding up inside your head
The hopelessness around you
In the dead of night
Beware of sadness
It can hit you
It can hurt you
Make you sore and what is more
That is not what you are here for.
The concert was performed during an era when Clapton was living like a recluse, strung out most of the time on heroin. Harrison was not even certain he would show up until almost the day of the event. But he does show up, and blows them all away with his steady, powerful playing. It is Clapton’s guitar that is playing the twangy oh-so-familiar guitar in My Sweet Lord! At the end of While My Guitar Gently Weeps, Harrison starts picking out a lead solo while Clapton is playing one, and they turn to each other and riff off one another, like something out of Derek and the Dominos. You can actually see Clapton adjusting his masterful fingers to match and respond to Harrison’s solo.
And I haven’t even begun with my response to Dylan. When he first comes out, there is a lot of fussing with his mikes and his harmonica. I swear he looks annoyed about the whole thing; I found myself wondering, was Leon Russell standing too close? Did Bob D mind that little solo punctuating It Takes a Lot to Laugh, It Takes a Train to Cry? I also wondered why he changes the lyrics in Just Like a Woman from “She makes love just like a woman,” to “She aches just like a woman,” and “She wakes just lke a woman.” Was there censorship going on? And listening to A Hard Rain’s Gonna Fall, I could practically taste each lyric because I could watch them fall from Dylan’s sensual, twisted mouth.
When my little (albeit brown-eyed) son began singing along with Hard Rain, my heart lifted in ecstasy: a new generation is born?
I hope so.
I have not (yet) had occasion to be jealous that my husband’s attention has strayed to other people. But one thing I do know: I have always come second to his love of math. Ned is the first one whom I ever heard use the term, “recreational math.” I am strictly right-brained, liberal arts (heavy emphasis on liberal, but that’s another post altogether), so I thought, “whoo-hoo! Fun with numbers. Where do I sign up?” So, in college, where we first met, (25 years ago) I had to pretend to be interested in polyhedra in order to get his attention. But look at this guy. Can you blame me?
(Also, for extra points, can you guess what object has been cropped from this photo?)
We still have a week’s worth of Chanukah that we must get through
And tons of dumb little presents yet to undo
Can anything be quite as anti-climactic
As Chanukah after Christmas, it’s making me frantic!
To change the subject, I go back to the computer on my lap
And try to sift through what is good and what’s crap
And I’m supposed to be starting to write my next book
But I can’t even come up with an idea or a hook
And visions of Visa bills are dancing in my hungover head
while I look at the clothes to be folded on the bed
There’s stuff received from my in-laws’ Christmas to unpack still
While I’m thinking, why, oh why, did I have to eat and drink my fill?
And still I’m trying not to eat all the good things I’ve baked
‘Cause I know that being slim just cannot be faked
But I’m going to have to try and fake it, you see
‘Cause in two days I’m going to be on MSNBC!
So I’m taking some time to blog something worthwhile
So that at least some of us will be able to smile!
What I’m trying to say though the words ain’t out right
Is Happy Holidays to all, wish their end were in sight!
Today I was thinking more about the side in favor of biomedical inteventions because I heard from a reader who was so enthusiastic about how the DAN! protocol “worked” for her son, in that it helped his functioning and communication levels. It dawned on me that I should blog what I was thinking: that there might be many conditions out there being called “autism” but that are possibly something else that just manifests as autism.
We are all aware that there are many more kids with allergies today than there used to be. Unlike autism, it is much easier to diagnose an allergy. No one can claim that the rise in allergies is about better diagnosing, because most of the time having an allergy is a clear-cut thing, where you get some adverse reaction that is pretty straightforward and unmistakable anaphylaxis or something like that.
Or so we think. What if there were something called “Allergy Spectrum Disorder,” where you have a much larger spectrum of allergic response, from sneezing at pollen all the way up to autistic-like symptoms from eating gluten? I think that this is the ASD that some parents are looking at, frankly, and not the ASD my son was born with. It is hard to ignore the scores of “success stories,” where you hear of a kid becoming so much more verbal within a few weeks of discontinuing gluten and casein. There must be some explanation for that.
I think there are three possible explanations: 1) The diet helped the child’s allergic symptoms; or 2) The child was improving on his own and had a burst of development that coincided with the use of the diet; or 3) The child has not improved much, really, but the parents are so happy and relieved to be taking action that they feel differently and see things differently, and see their child with new, positive eyes.
Any of the above are happy occurrences, when you think about it. The problem comes when one side wants to make a claim that would become a generalization for all kids. Once the biomedical side claims that all autism is is a form of environmental poisoning for all autistic kids, and that we all should act now to obliterate autism, that is when the the trouble starts. Once the autistic-rights side claims that there is no way to address autistic-like symptoms with biomedical interventions, and that we should stop trying to find a cure for autism because that is an insult to all autistics, that is when the trouble starts.
Parents must find the right balance between trying to improve/alter their child and trying to give him the skills to have his best shot at life. Society must find the right balance between trying to include and accept people with disabilities and differences, and trying to ameliorate the conditions that cause disorders (cure them). These are tall orders for a human race that is all too human and racist to begin with…
Maybe what we should be looking to understand is HSD: Human Spectrum Disorder.
Is there anything better in a relationship than laughing over something funny you experienced together? This shared humor is what binds me closest to the people in my life. I like coming up with shorthand references to funny things that happened and bringing them out at other times. I think that our children probably give us the most material for this. All three of our boys have come up with some amazingly astute or outrageously naive one-liners that Ned and I refer to years later.
Whenever someone is stuck, but it’s kind of their own fault, one of us will say, “Hep me Daddy, I tuck.” This refers to when Benji (at the age below) was standing in his crib and Ned walked by, and Ben naively asked his daddy for help, believing he was “stuck” in his crib and that we didn’t know about it. And being his all-powerful, all-good parents, we would help him get out! When, of course, we had put him there in the first place…
I can’t believe Benj was ever this little or innocent. Remembering makes my heart squeeze with a pleasurable pain. And so last night when for some reason Ned said to me, “Remember Benji in that crib…?”
And I then said, “Hep me, I tuk.”
We both laughed longingly but also deliciously. There is nothing quite as satisfying as sharing a laugh at your kid’s expense!
I am going to be interviewed on MSNBC on Wednesday, December 28, sometime between 9:30 and 10:30 a.m. EST, talking about my book, Making Peace with Autism. It will be live from a studio near where I live, a split-screen, slightly time-delayed type of interview. I’ll try to smile a bit. Very excited!
Spread the word, if you could…
A lot of friends say to me, “I wish I could write,” and they sigh. I find myself wondering, How can you not write? Writing, to me, is akin to seeing a good friend. Most of the time, you want to do it; there are times when you don’t. But if you put yourself in that good-friend mindset, you find something there just about everytime.
When people ask me how I write, I tell them I start with an intense feeling and go from there. What are you sad about? Angry about? Insanely happy about? Moved to tears over? Anything that has caught me in the belly gets written about. Most of the time I guess that’s my kids because — let’s face it — they originated in my belly, literally. But even if you adopt your kids they originate in your mind, then your heart, and once you know them there is that visceral connection. (This I know from dear friends of mine who have adopted kids.)
You start with the emotion and you then name it, and the piece emanates from there. The less I attempt to give structure to it, the better. So I never use an outline. I hate outlines. Outlines kill my creativity. Similarly, I hate writing at a prescribed time of day for a prescribed amount of time. It then becomes a task, which is creativity death, too.
To write, you shouldn’t think about the entire project in your head. That will kill it too, because it is overwhelming. Even though when I write a novel I often know how it will end, I do not let myself think about that when I sit down to work on it because that will choke me. You have to write the piece — however small it may be — that you need to write in that given moment and be happy with that. And yes, if an idea or perfect passage seizes you at 2 a.m., you should run to your laptop/pad/typewriter/crumpled tissue and write it down!
You must follow your internal writing guide, which is unique to you. Sometimes that may mean that you can’t eat breakfast. Sometimes it means that you will sit and write the entire book bare bones, and spend the rest of the year filling in the details. Sometimes it means writing a great scene, or just the inside of a character’s head. Sometimes you will discard that later; but always save it somewhere else because you can borrow it and adapt it for another project later, and you will, trust me.
I don’t necessarily write what I know. That is not necessary. Write what you want: that is the universal rule. I have written books about 19th century Russia, people with past lives, people with dead siblings. People who are divorced. Do I know any of that? No, thank God. But I can imagine, talk to others who know, and do research. I can listen to conversations and glean bits about how people really talk, and store that away for later, using their speech patterns even though I do not know them, and I am not them.
When you write, don’t judge yourself. It is best not to think things like, I write, but I am not a writer. Allow yourself to begin to feel like a writer, if you want to write. When would it start to count, after all? When you’re published? When you’re a bestseller? Why have a standard like that? Just do it. Start typing and see what comes out. If it’s awful — and I doubt it will be, if you follow my rules of thumb — go back to it and hone it. You should, anyway. That’s the final rule: you are never finished, there are only deadlines.
I tried selling this piece everywhere: WashPo, Times, Globe, O, and nobody was buying. It is now grist for the blog.
What do you do about loving somebody who can’t love back? Given that all my life I have been the garden-variety insecure, low-self-esteem kind of female who has soured countless relationships with my demands, my inability to take things at face value, and my need for evidence of love, this is a particularly thorny problem. Because now that I have an autistic son, and I must absolutely do without.
When I decided to have this baby, I remember thinking to myself, “Now I will always have someone who unequivocally will love me.” Of all the things I worried about while pregnant, I never imagined autism. Not with an incidence of 2 in 10,000. Who thought of autism? I thought instead about how bad it would be if my child became someone horrible. “Please make sure he is not a criminal” I’d whisper. Or what if he died before me? “Please make sure he is healthy.” I should have been more specific, but who thinks, “Please make sure he is not autistic?” Then you’d also have to add the litany of other unwanted conditions, personality types, situations. “Please make sure, no cleft pallate(?), no cancers,” or “Not someone who invalidates others’ feelings, bullies, or teases.” But praying for your baby can’t be like ordering a la carte.
There have been so many things since then I’ve adjusted to, given my blithe naivete at the beginning: every milestone an agony of waiting, hoping; figuring out what I could expect from Nat, when even autism experts couldn’t tell me; figuring out whether and then how to give him medication; breathing down the necks of his teachers while knowing there’s no way anyone could do more for him. I ache for him because of what he will never have, never be. But the way I ache to get something obvious back from him is probably the hardest of all autism adjustments.
Nat is sixteen years old now, which means I’ve spent the past sixteen years mining every interaction for significance. Teenage boys are already so evasive by nature, using their moodiness and their Ipod plugs to define the boundaries between themselves and their intrusive parents. Perhaps, then, I have had a jump on my friends who are only now facing the stony silences and the blank stares. Autistic teenage boys are just ganglier versions of their plumper, youthful, isolated selves. One-way conversations and lack of eye contact have been a part of my experience as a mother since Nat was two.
And yet, that doesn’t really make it any easier. Take eating, for example. Sometime last fall I happened to offer seconds at dinner time. Maybe I hadn’t done that before, because I assumed that everyone would just ask or take it themselves. Nat never asked for seconds; he would always get up from the table the moment his plate was empty. This time, hearing me say, “Anyone want some more?” he came back to the table and proceeded quickly to devour the large second helping I had given him. When I offered a third helping by asking the same way, he took it. I realized then, my stomach plummeting heavily with guilt, that all this time he probably would have eaten a second helping of food had I asked in just the right way. You ask in just the right way and you learn your child is hungry. What else am I missing, by not asking in the right way? I shudder to think of it.
On the happier side, I have learned to take delight in every successful conversation, no matter how lumpy his speech is; at least he’s talking to me, I figure. Or, like when he starts whispering to himself, and opening and closing his hand in rhythm with his words, I know he’s happy. I look for the puppet hand. I know that he likes doing something when he jumps up immediately and shouts, “Yes!” before I even finish asking. “Do you want to go outside and—“ “Yes!” And I know that when he doesn’t want to do something, he acts as if I’m joking. “Nat, should we vacuum before watching a video?” “Yes—No!” He mouth stretches into a grimace. “No, Nat, I’m not joking. We need to vacuum.” “No vacuum.”
Every new skill I can teach him is cause for giddy celebration and bragging. Nat is swimming in Special Olympics. Nat didn’t grab the rope in the backstroke race. Nat talked on the telephone. Nat no longer pinches his teachers. In my odd little family, sweating the small stuff is key, as are making mountains out of molehills. Face value is cheap; creating meaning where there may appear to be none is golden.
A long time ago, I realized on some level that Nat did not seek out my affection, in much the same way that I recently realized he did not seek more food even though he was hungry. It took awhile for it to register fully with me, because I was always hugging him, kissing him, picking him up, as a baby, a toddler, and a little boy. We did not lack for loving contact. But what I also did notice, in the earliest days of his life, was that I had this strange feeling a lot of the time, of love rising up in my throat like a wave, falling towards him, and then landing somewhere near him, but never met by him. I felt like he didn’t really need me, even though the evidence was there that he did: he cried for a bottle or a diaper change, he whimpered for sleep. If I had taken that at face value, I would never have feared that something needed addressing, and his autism would have gone undiagnosed far longer than it did.
So now, sixteen years later, I am no longer an autism virgin. I am hardened and wise. I understand so well now that wave of love is going to rise and fall like the tides, just as immutable. I also understand that whatever I need from this son of mine I am probably going to have to get someplace else, or try to find by searching his flickering glance. But every now and then, when I ask him for a hug, and I notice he is clinging to me a tiny bit after I have already begun to pull back, there is still this surge in my heart that tells me all I need to know.
Now that I am in my 40’s, I have developed a strong sense of really wanting to take a good-sized bite out of life and tasting all (or most) that there is to offer. I do not want to have regrets; no “road not taken” for me. This applies even to minor things, like how I spend free time, or being sure that I have some qualitative interaction with my children at least once a day.
The other night, while out to dinner at a wonderful restaurant, I found myself compelled to apply my hard-earned carpe diem-esque attitude to a total stranger. My husband and I were seated one table away from a twenty-something couple. The man, who faced us, was a little portly, with longish hair and a very young face. The woman was lovely, with long Sarah Jessica Parker hair and a slim, straight back. I could only hear his voice, which seemed to ring across the dining room and hook itself into my ear. I did not like what I heard:
You’re festering, Hon, I can see it. You shouldn’t fester. Hon, nothing good can come of festering, you have to let it out…
We heard the odd word, “fester” about ten times, something which would have annoyed even Uncle Fester. Worse still was his use of the nickname, “Hon.” I doubt that was her name. Who calls their date “Hon” to the exclusion of anything else?
This continued and got louder with every new paragraph. The man ordered another martini, and began slurring his words, continuing to call the woman, “Hon,” and badgering her to do this, say that. Be different. Be like him.
Oh, I am definitely a Two-Coast Guy. I’m definitely going to have a home in California and one here. Oh, ya gotta live on two coasts. No way am I just gonna live on one…
And so on. As loud as he was, I never heard a thing that Hon said. All I could hear was him haranguing her, urging her to be different than she was, this beautiful young thing, to listen to him, to be like him, the loud lout — and it put me off my feed. Even with a Snickers Sundae on the menu, I did not have dessert. And I do not like missing out on tasty treats, as I have stated above.
Did I mention that I had had a couple of glasses of a delicious wine? I turned to my husband and said, “You know, life is too short to spend your time with a loser.” He smiled at me, paid the bill, and we rose from the table. Suddenly, I just knew what I had to do. I would show her the way. I waited for my husband to go ahead of me, and then I bent and whispered loudly to the woman, so that both the guy and the woman could hear:
You can do much better than this. Get out while you can.
I stood and smiled, and walked out, leaving the guy to sputter in his martini, saying, “Did you hear what she said?” And to my delight, he repeated it, in case she had not heard. I could not have written a better ending.
Maybe now she will take this opportunity to reflect on her situation, on the many other roads to be taken, and take leave of this dead end. Life is too short to spend time with people who don’t make you feel good.
I am no domestic goddess. I would rather be waited on hand and foot, but being the mother of three very active boys, that is not to be.
And yes, in my use of the term “domestic goddess,” you can see that I’ve linked to Real Simple rather than the expected Martha Stewart. That is because I see Real Simple as being more of a scourge on the housewife’s horizon than Martha ever was. Martha has taken enough garbage, for one thing. She did her time, so to speak. But even more important here, Martha has been misconstrued for decades and I want to set that straight. Martha is the realm of domestic fantasy, where you can gaze upon spun sugar snow fairies and country houses slathered with just the right paint colors and filled with perfectly aged furnishings. Martha was never to be taken seriously! Martha is the dream, like being waited on hand and foot.
But Real Simple; that’s another thing altogether. First, the misleading name. The magazine should be called “Real Hard,” or “Real Nudgy.” It claims to be all about simplifying one’s life, taking pleasure in simple things, etc., but it is really about mind-numbing chores that would drive even the most enthusiastic housekeeper to drinking Pine Sol. Anything that has a full-color photo spread on labelling boxes of household mail, or a two-page rundown of what house chores one should do when, and how many times a year (like dusting, vaccuuming couch cushions, getting rugs shampooed, for instance) should not be claiming to be about anything simple, but rather, is about the Really Simply The Most Boring Drudgery One Can Ever Do.
I’d much rather spend my time picking out a great sweater than picking up the throw pillows and rotating them every so often. Or, of course, buffing an opening hook on an essay than buffing the floors. But sometimes writer’s block hits and then what can you do?
All the stuff you neglected while you were on a roll. But I am not talking about getting out that special tool for dusting Venetian blinds. Let me explain where this rant is coming from:
Ever since we bought a big, messed-up Victorian house,
we became “house poor,” and so, I am the house cleaner. Oh, sure I get my sons to vaccuum a bit, but that takes a lot of oversight and that makes me tired. Sometimes, let’s face it, it is a lot easier to vaccuum three dusty floors myself than to scream, “No, Nat, you can’t just vaccuum one spot for three hours,” or “No, Ben, you have to do more than just clunk the vaccuum against the floor and then run out of the room,” or “No, Max, do it now!”
So, I hate house cleaning because I have to yell at my boys to get it done or get really tired and really dirty doing it myself. But the thing I always forget is how satisfying it is to look at the house after I’m done cleaning it. There is nothing like the pleasure of doing one’s best work by oneself, and in one’s own way. So if I skip dusting for a month but wash the floors every week because I love the shine on them, then so be it. And nothing beats sinking down into a soft clean couch with a good book when all is done! Or better yet, off to buy another sweater!
A reader from a website I respect wrote in about my use of the puzzle piece on my website, the by-now familiar symbol many use for autism awareness. She asked me if I would consider using the infinity sign instead, adding that the puzzle piece carries a negative connotation for some, because it implies that our children are somehow not whole, that not all their pieces are in place, or that they are puzzles to us. I told her I would think about it, but I am hesitant to make this change, because frankly Nat is a puzzle to me in many ways, although I agree with her that he is completely “whole,” just as he is.
I wrote the following commentary for NPR’s Marketplace, but they “are not going to use it.” (Don’t you just love the myriad ways editors express rejection of one’s work?) The piece is about how everyone is talking about the XBox 360, and how they can’t find it anywhere, and yet Max, my cool dude thirteen-year-old (front and center):
could not care less.
X Marks the Box — A Commentary Meant for Public Radio
Where did I go wrong, raising a boy who has no interest in violent video games? My thirteen year old son Max doesn’t care about Xbox 360, the must-have present for teenagers this Christmas. Even though Microsoft was even cannier than usual in this round of marketing because they managed to ship their next generation product ahead of Sony and Nintendo, in time for Christmas, and in short supply, Max remains indifferent to its charm. “The graphics are good, but it’s mostly all sports games and first-person shooters,” he says with mild disgust.
I know what you’re thinking: artistic type. Anti-technology.
Wrong. Max is as big a computer geek as they come. Max is Uber-technical, obsessed with designing his own computer games, making Flash movies, hacking, and blogging. Max’s computer teacher comes to him for help.
Which is the real crux of my problem: what presents can I, a hopelessly right-brained, soft-hearted female, get this boy? How can I connect with him, a virtual stranger wrapped in baggy pants and attitude? Long gone are the days when I could make him smile with a new Beanie Baby. I look at Max’s wish list, bewildered. Every item is a significant bit of software, averaging close to $100. I need a manual to understand the names. I need to know that “Alias” software is different from an Alienware computer, apparently the most awesome of computers because it has alien eyes on it – for a retail price starting at $4,399.
Hmm, I think desperately. Maybe I can just paint some alien eyes on my old Mac?
What am I going to get Max? I’m panicking.
And then I notice the item towards the bottom of the list: Weebl and Bob Plushies. Weebl and Bob Plushies? I dutifully Google it, and there, before my eyes, are a cluster of little stuffed creatures with the sweetest faces. Tiny, dot eyes; felt bodies. My breath catching in my throat, I realize that I have stumbled upon the other side of thirteen: Fragments of innocence.
I can order Weebl online for $17.75. In fact, I will order the whole set, because now I feel like celebrating that my son is completely out of the mainstream, difficult to shop for, and I couldn’t be happier.
Benji, my youngest, has his winter concert tonight. (Yes, I said “winter concert,” not “Christmas concert.” Our town is so completely hogwild into “diversity,” God bless them, that the kids always learn a whole mixture of “seasonal” tunes: something from Asia, for the Chinese New Year that’s coming in January, something for Kwanzaa, something for Chanukah, and even something for Christmas.)
At his kindergarten concert two years ago, Ben wore a tie:
At last year’s concert, Ben wore a tie, a real one that time. But for the entire concert, he played with the tie. It went up, it went to the side, it went all around. It is amazing how many ways a six-year-old can play with a tie while standing in the front row at a concert, principal looking on and parents frowning.
I asked Ben if he would like to wear his tie this year.
In true Ben style, he said, “No, that tie distracts me.”
I gave the New Yorker the opportunity to publish a wonderful, moving bit of poetry, but they turned it down. I now give it to you, though it is not truly mine to give. I recorded these unintentionally poetic words uttered by Nat when he was about to turn five (eleven years ago). I came across them again recently. I now know that this was the beginning of his self-stimulatory talk, a common feature of autism, and something that was a huge struggle in our lives for the longest time. I eventually learned what self-stim talk means to Nat (it is a great source of comfort to him and I believe helps calm him and organize his thoughts) so I no longer cringe at the “silly talk” (his name for it). I cringe when other parents talk about getting rid of their children’s self-stim talk because I both understand their heartache and struggle, and wish that they knew what I know. I don’t mean that to sound arrogant. I just wish that we parents could learn faster and earlier just who our kids are and love them as they are. There is, of course, a thin line between loving them as they are, giving them the skills to help them succeed and thrive — and trying to shape and change them into something they’re not.
Anyway, I was and still am struck by the simple beauty, rhythm and emotional content of his words. If I had extinguished Nat’s silly talk when it first emerged, I would never have heard this haunting poem.
I call it “Dark.”
By Nat Batchelder, age 5
No crying in the dark.
Settle down, stop.
No running away
And stop running away.
You better stop,
You better stop crying.
The Farrelly Brothers are coming out with a new movie, The Ringer, about a man who decides to rig the Special Olympics — he pretends to have a developmental disability so that he can win. But what happens is that he gets to know the other teammates as people, and makes connections with them. It is not corny, however; in Farrelly style, the whole thing is done with over-the-top humor.
In fact what I think is the best thing about this movie, though I have only seen the trailer and read this New York Times article (thanks to the ARC of the US), is that the Farrellys used a lot of people with developmental disabilities (mental retardation, Down Syndrome, autism, etc.) who come across as real people, not two-dimensional souls you merely feel sorry for or look away from. This movie gets you to look disability right in the face and get to know it, without either of you being destroyed, degraded, disgusted, or manipulated. There is no Message here; it is a comedy that happens to use all kinds of people.
To give you further evidence of the sincerity of this movie, Special Olympics Chairman Tim Shriver is the executive producer, a good guy if there ever was one.
The fact of the matter is, developmental disability is hard to look at if you are unfamiliar with it. I remember my secret prayers when I was pregnant with my children: “Make them okay. Make them normal.” Mental retardation is dreaded by pregnant women. There is prenatal testing for it, research about how to avoid giving birth to a child with DD. All this implies the truth: we don’t want our children to have to face obstacles to happiness. We don’t want to have obstacles to our own happiness, either.
But what I have learned from Nat is that you never know what your happiness is going to look like until you open that box. Happiness might come in the shape of a Down Syndrome baby, but you won’t know until you get to know him. Happiness might come from watching a struggling child learn to swim and get the gold at Special Olympics. Happiness is not always giving birth to the Harvard-bound baby, although that may look like the more obvious path to happiness.
We think we know what the brass ring looks like, but the truth is, sometimes it’s not brass, and sometimes it’s not even a ring. The trick is to keep trying to recognize yours, and grab onto it when you can.
A good friend who is a writer and very beautiful once told me that “a book tour brings ’em out of the woodwork.” The theory is that people somehow become highly attracted to one who is in the spotlight, on one’s own, and apparently successful. It doesn’t hurt that when one goes on a book tour, one generally spruces up a bit: new clothes, attention to hair and make up. The travel, though inconvenient, is exciting. Doing interviews, giving talks, being on television, and going to parties, make the endless slogging that comes with the necessary promotion all worth it. Best of all, one comes into contact with so many different, interesting people. And sometimes those people are not shy about telling one about their admiration.
This, of course, can be intoxicating, seductive, and pose challenges to even the most happily married women.
The big question is: what does one do about such attention from others? This New York Magazine article offers an intriguing perspective on a potentially t(horny) problem. Hey, we’re all complex human beings, after all. Aren’t we?
(Thanks to Halley’s Comment for the magazine link.)