1) L’Oreal sunless tanning goop – always gives me just the right color and dries fast
2) My 10-mile bikeride through Chestnut Hill – not congested, ends by Starbucks
3) My writers’ group – they understand the highs and lows of this job, they’re funny, and they’re fabulous
4) A great flirtation – oooh, baby (sorry, cannot disclose)
5) Cadbury chocolate creme egg – when I allow myself this, it is the best food on earth, with “real” egg yolk inside made of gushy sweet vanilla cream. A mouth of delight
6) One perfect glass of wine – to soften my head a little bit
7) Getting flowers – any flowers, but the best are pink roses and blue delphinium…it’s been too long…
8) Earth, Wind, and Fire’s Reasons – one of the sexiest songs out there
9) When Ben gets to play with Chris – always works out, Chris is the greatest, most easy-going kid and lives right around the block.
10) Having Max babysit – he is so conscientious, so competent, sweet, and his fee is less than our other sitters.
The other night I gave a reading near New Haven, CT (drove four hours and sold only two books, half the audience was my family, I’m still exhausted, but okay, never mind, still a good conversation with the people there…). At one point, a woman in the audience started talking about J-Mac, and she made an interesting point. She wondered why everyone was so surprised that a kid on the autism spectrum would be able to be so focused and in the zone so that he could shoot so many baskets in a row like that. “It’s a trait of ASD,” she said, smiling. “People are surprised because they are not used to thinking of autistic traits as being beneficial, but if this kid was in the zone, it’s because he is probably often in the zone!” I laughed because I realized she was probably right. One excellent aspect of having autism is the gift of profound focus. I know I wish I had more of it.
It got me thinking about Nat and his recent affinity for basketball, particularly after I received an email from Dave, the stepdad of a kid on Nat’s Special Olympics basketball team. Dave had recently invited Ned and Nat to play basketball with him and Philip once the season ended, and a few weeks ago, they went. I wrote an essay about the whole experience, which I am still trying to publish, so I cannot yet blog it, but here is what Dave had to say about the day (I hope he doesn’t mind that I am quoting from his email, which brought me to tears, and had Ned saying enthusiastically, “Dave is such a good guy!”):
I have a few memories from that day that I’ll never forget. As soon as Nat came out of the house, walked up and surpised me by saying, “Hi, Dave” (He might have actually said ‘David’ — but I was still stuck on the fact that he greeted me!) I knew at that point that he really wanted to play. I was also touched that he called me by my name.
A few other high points / surprises for me:
• After he took a few shots, I would ask for a “high five!” which for which he would offer a respectable hand smack, but after he got warmed up and started hitting a few mid-range baskets, he would give me honest-to-goodness high fives with some power to them.
• His hand position on the ball forced his shots to fly too low. It seemed that he needed to give his shots more lift, but I couldn’t figure out how to show him what to do. Finally, I realized that if he only used one hand, he would be forced place his hand under the ball for support. This position is exactly what I though he needed to give his shot more arc. Sure enough, on the first try he bounced the ball high off the glass and into the net… using only one hand!
• Later, Nat got a little winded and sat down for a few minutes. While he rested, Ned and I were chasing Phil around. After getting a bit winded myself, I came over to the sidelines and told Nat, “Ok, my turn to rest. Get up and take my place.” Without hesitation, he lept up and started shooting again.
• Watching Phil try to block Nat’s shots, and seeing Nat make adjustments to get them over Phil’s reach. A little defensive pressure made a big difference in Nat’s activity.
• At the very end when everyone was just about finshed, I was impressed how Nat would go after his missed shot and instead of picking up the ball with his hands, he would roll the ball with hist foot. Just when I expected him to let the ball roll away, he would make a swift, and accurate motion with his foot, bring the ball to a stop, and then, as if pondering his next move, would rock the ball under his foot.
I do believe that not enough was made of the possibility that J-Mac’s ability was directly linked to autistic focus. But more than that, I think, after reading this, that it is not necessarily about basketball or even focus. I think the success of Nat and J-Mac at this particular sport is all about the favorable attention they got from the people they were working with directly. Just enough, and just the right kind of attention. A guy-kind of attention, not too touchy-feely, just “Hey, dude, let’s play!” and then, “Hey, dude, awesome job!”
I have been having a horrible day, one of my worst in a while. Still having trouble with one particular friend (INF) and I still care too much merely to let it go. But I think I have done everything I can to make things better in that regard, and now it is up to INF to figure out how to make things work. I have kind of drawn a line in the sand. I had to, to protect myself. I kept getting hurt.
I had posted a blog entry that read “Top Ten Reasons My Life Sucks” but I have since taken it down. My life doesn’t suck; some things about today did.
Through all this, this horrible, cruelly beautiful day (68 degrees and sunny), Ned has been in touch with me — in his quiet way. Through I.M: “I Love You,” he wrote at one point. Then, on the phone, 6p.m: “Coming home. We going out?We going to have fun?”
“I’ll try,” I said. We had decided to go out to dinner once we realized we did not have to attend a certain school function.
So now, I’m going to put some chicken nuggets up for the boys and put on some makeup and cover up these damned puffy eyes. I’m going to get dressed up and go out with my first love, still with me after almost 25 years, and remember to thank God for this life, as bumpy and crushing as it gets.
Here we are at a happier moment, the Green Room at the Today Show
Ned believes that most people are like one animal or another. This is kind of a game we play, where we meet someone and I say, “So, what’s his animal?” And Ned will think about it, and tell me, and why, and it is always right. He thinks of himself as like a lion, because he’s tawny, he has a large head with a mane (golden beard), he loves meat, he loves to sleep in the sun, he is extremely self-confident (and right to be so) and has an incredibly powerful temper when angered. We don’t often tell other people what their animal is, because it often disappoints them. Many people think they are cats, but they are not. I had a friend who was flighty, skinny, beak-nosed, and timid, and she insisted she was a big fluffy cat. She might feel like a big fluffy cat, or want to be one, but she was definitely a bird. Some people we know are dogs, big and friendly, eager to please. Some are raccoons, pointy-nosed and overly concerned about washing. Some (my sister, for example) are monkeys, chattering a lot and jumping around, making mischief. Some are braying donkeys, long-jawed and given to making long, boring speeches. Nat is a wild pony (dances away from people, comes close every now and then for a sugar cube, has a long face), Max is a big, lumbering mostly gentle bear (can be frightening when mad, mostly cuddly, very strong), and Benj is a goat (Aries, used to eat anything that wasn’t food, is stubborn, little, and can fight you). You can see why it is often difficult to tell people what their animal is.
He thinks of me as a rabbit, because I get afraid of things, I retreat into my warren, particularly when the world gets to me, I am soft-hearted and fluffy, (and, he tells me, soft to the touch), and I am very attuned to changes in people’s moods (sniff the air for the changes) and changes in the environment. I am really plugged into the natural world. At this time of year, I stare out of different windows and study the ground and the trees daily for new signs of spring, and tell him about them (he, of course, has never noticed them, because he’s busy prowling the veldt). He calls this, “the report from the fields.”
Today’s report from the fields: I’m a little shaky from too much caffeine and not enough sleep (and my rabbit’s tender equilibrium), but happy. I noticed bright green buds on my apple tree. The neighbors’ white magnolia is about to bloom. A trilling bird call woke me up at 5 (must be someone I know!)
Joy of Autism has posted a particularly beautiful passage, about her understanding of autism as another way of being, rather than something to be cured.
When Adam was first diagnosed, I was confronted by one type of “scientifically proven therapy.” I joined an organization that funded research in support of a cure because I believed, at first, that autism was an illness that masked my son’s true potential. At least that was how autism was presented to Henry and I. Once we enter the “stream of autism,” as parents, there is little choice to believe these messages as sole choices in a culture that does not accept acceptance for people who are different.
I hired therapists who viewed Adam as a pathology and that didn’t feel right. After two months of being in “the autism stream,” I decided that something was horribly wrong with this view. It took a while to trust myself…
This resonated with me and made me remember how I felt when I read Sean and Judy Barron’s There’s A Boy in Here. I am not referring to the alleged “recovery” of Sean Barron. Be that as it may, what moved me is the part where Judy, a mother in the ’60′s with a young autistic child, rejects the current thinking of her day, that said that the mother caused the autism, this was a magical moment for me. Such liberation, such bravery! To be able to say to an entire establishment, “You are all wrong.” It is a lonely, but completely empowering, path to take.
And it is a scary path to take. To go against the system in one way or another is very frightening.
Last night I attended a meeting of a group of young parents whose children are very young and have ASD. These parents are now trying to organize and get our town to provide better supports to include their children in typical classrooms, much as I tried to do with the parents of Nat’s peers eight years ago, which led to my running for School Committee.
All of these parents were very knowledgeable about autism approaches, about the various components of education that their children require to learn best. They all had the common trait of being certain that, given this powerful combination of services, their children would continue to thrive in public school settings. I still believe that. Our town has never put together the right combination for Nat to thrive here, so he has always been in private, mostly autistic-oriented placements. I am a believer in public school, so I have had mixed feelings about this. On one hand, Nat has had a lot of the attention he requires to learn. On the other hand, he is lost to our community.
Nat did not have effective intervention until he was five. And then, after years of an inconsistent, spotty record of school placements (we were continually dissatisfied with his education), he wound up where he is now, a private, prevocational school for autistic people. I will always wonder if he would be higher functioning if I had followed my instincts and gotten him evaluated and helped much earlier, like so many of these new parents I know. If the schools had done right by him, if I had found his medication earlier, if I had kept up the pressure and made sure he had adequate speech/language therapy all the way through, if, if, if…
Would he be higher functioning, (I hate that term, but I can’t help but feel that I wish he could talk more, so that he could learn more about the world, and we could learn more about him, and he could be independent) if I had known what to push for sooner? Even though I have the courage to think differently, I don’t always hold onto it. Even though Judy Barron’s attitude empowered me so many years ago, I did not understand fully what Nat needed until years later. I did not even really understand how to connect with him until later. How do all these younger parents know so much, earlier? Why couldn’t I have had as much clarity sooner? Would it have made the difference in Nat’s life?
I was both moved and lonely at last night’s meeting. I was cheering them on, helping in any way I could, but on the other hand, the following question kept swimming around in my head:
By no longer being this angry, have I given up on Nat?
Is there more I should be doing? Is my “peace” with autism just another form of healthy letting go and coming to terms, or is it giving up?
A picture may be worth a thousand words, but that won’t stop me. I am so intrigued by Benji’s mind. He invented a world, a planet called “Stickfus,” which is inhabited by stick figures (Gufligees, Eywetie, Max the Mad Scientist, Pinya, to name a few), and the people on the planet speak two languages: English and Sticktopian. Benj has created this (latter language) and has remained remarkably consistent when he refers to it. His name in Sticktopian is “Bejoq,” (sometimes he signs his schoolwork that way), and so we decided to make him a Planet Stickfus cake with his Sticktopian name on it. You can see for yourself just how happy this made him; the camera caught him in a rare, soft moment. Sigh
The other night, when I read at the Barnes and Noble in New York City, the young events manager was explaining to me about the noise generated by the air conditioning; he said it was, “retarded.” As always, when someone otherwise kind uses this term in this manner, I winced (inside) and cast about for an appropriate response. I said, laughing, “You know, to me that is not a bad thing.”
He paused for a moment, looked appropriately embarrassed, and mumbled something sheepishly, maybe, “Oh, right, sorry” I don’t know, and the awkwardness passed. My mission had been accomplished: to point out in a light-handed fashion, the misuse of the word “retarded.”
Being retarded has some really bad PR. It is like one of the worst things you can be, apparently, at least to many in the general public. Kids insult each other with it, second only perhaps to saying “gay” disparagingly.
Having a child who tests in the retarded range, I have been feeling for years that I have to step in and get people to stop misusing the word “retarded.” I have written letters to ignorant, offensive talk show hosts. I have said to store clerks, “You seem like a nice person. Don’t use that word.” I have said to friends, even, “Let’s not use that word when what we mean is, ‘unskilled,’ or ‘socially awkward.’ Not as satisfying, sure, but that’s not my problem.
Then I heard that there were organizations who had for years worked to improve the lives of the “cognitively disabled” and who were changing their names from using the term “retarded,” to something perhaps gentler, nobler, PC-er?
That seems wrong to me. It’s just that “retarded” is so often misused. The burden should be on the abuser, not the victims.
But frankly, there are so many of us who just wish that our children were not “developmentally delayed,” and so that any other name would smell just as sour. I remember going to an event to raise awareness for a certain approach to autism, and one of the speakers talked about how their child was, at first, diagnosed as “mentally retarded!” Gasp. But now, thanks to this approach, he was “high functioning.” (Never mind that, in the video of the child Before, I observed that he actually played quite well, and at the time wished that Nat could even play as well as that!)
So I thought of Natty, with his “undesirable” diagnosis, and for a split second, the Mother Bear in me nearly jumped up and clawed the speaker to death. And then, I swallowed, and calmed down.
When fetal Nat was growing inside me, all I ever asked of God was that he be healthy and not a criminal. Maybe I should have asked for more, but I always like to prioritize and those two things were the bottom line. God is busy and may be a little ADD; you have to pick and choose what you ask of hm.
The problem is not with the term or diagnosis of “retardation.” The problem is that some people are viewed as less-than by others. I think it is up to me as Nat’s advocate to set them straight. You misuse the term “retarded,” treat it like it is a bad thing, and you will hear from me. Growl.
It is the shopping cliché of all time. The annual bathing-suit try-on. I do not know of a single woman out there for whom this is an easy task. I lost twenty pounds about 3 1/2 years ago, got down to maybe a 6 or a 4, and yet it is still the biggest drag in the world to buy a bathing suit. When you go to buy a dress, you know where to go; you go to several stores where you will eventually find just the thing. When you go for shoes — and this is not that easy a task — you still know that you are basically a size “8” or whatever, and you get an idea of what looks good and what does not fairly quickly. There is not tons of self-esteem at risk here. The dress, yes, perhaps, but it is easy enough to find one that covers you in just the right way.
So what is it with bathing suits? Why is it so excruciating? Why does it take twenty different ones to maybe get one?
It is the designers. They don’t know sh** about women. And this is not about “everyone hates their body.” This is about designers who cannot measure, who don’t understand the first thing about the female form and can’t be creative if their lives depended on it. Therefore I am making a list to “out” the worst features and see if they can do better from now on.
First of all, the Miraclesuit: there is no miracle here. It does not work. Nobody is fooled. Any suit that is two sizes two small will reduce ones waistline by an inch or two, but what do you do about the way the excess — usually your thighs — bulge over the leg elastic? And why do they always come in hideous, mournful color combos, namely black or black with something? Do the designers thing that because a woman feels she needs a bit of squeezing that she is also in mourning?
Second: the tankini: Why is it that these all look the same and fit completely different? Why do most of them have the high bottom if there’s also a long top to pull down, creating layers of excess stetchy fabric around the middle (Nautica)? Why do many of their bottoms have a seam down the ass crack (Ann Cole, Calvin Klein, Anne Klein, and Ralph Lauren)? Do the designers think that just because it’s mostly soccer moms wearing the things that they don’t care if it looks like they have an ass crack on the outside of their bottoms? And finally, what about the tankinis that come down to just below the bust, leaving a huge gap of stomach showing? If we wanted our stomachs to show, we would wear bikinis!
Which brings me to my third gripe: the bikini: What is the point of labelling these things small, medium, and large, when they are really small, smaller, smallest? I looked at a top marked “large” today (Calvin again) and I held the triangle “cup” in the palm of my hand and it fit right there! Then I tried on one marked “DDD” thinking, “wow! All the power to you, Shoshanna (the designer) for thinking in terms of large-busted women’s sizes, only to find that the front was cut so low and so wide that half my breast was still showing! Shoshanna must be designing for porn stars.
Fourth: Why don’t manufacturers get it together and do all mix and match? Why not decide that stores can mix and match brands, not just tops and bottoms? What woman is always an “8” in bathing suits, top and bottom? Most people who are small on top are larger on bottom, and those who are heftier around the top and middle tend to be a little lighter in the ass. That’s the way God planned it: almost nobody gets both ways. That’s why the women you see with the perfectly skinny bodies and the floaty round breasts are usually implant victims. Anyway, that way if the Nautica bottom fits you, but the Ralph Lauren top is better, you can put them together.
Fifth: What is with the colors and patterns this year? Is it 1978? If I see one more flower-power suit I think I’ll scream! Ann Cole used to be the best for color; this year, it’s all that retro garbage! The rule is, that if you wore the pattern or style when you were a kid, you probably don’t feel like wearing it now!
Sixth: If there is a tummy tightener, a waist lengthener, and a high-cut thigh for fat thighs, why is there no bust minimizer bathing suit that is not a grandmother one-piece? Why can’t they make tankinis and bikinis for people with big busts? Or an ass-shaping kind for the babies who got back? Use some of that great underwear technology harvested by Victoria’s Secret or Minimizer Bras to do some good! You’d think Victoria’s would have a clue but forget it! Their bathing suits fall prey to the same problems as everyone else’s. Believe me, we don’t want strangers knowing this much about us that only our husbands, boyfriends, or doctors should know!
We women want colors, patterns, cuts, shaping for real women: not funeral guests, not Skipper, not Barbie! Get a $#% clue, designers or we’ll all start going in the water in our shorts and tee shirts! Hey, that’s not a bad idea!
My Brookline Tab column this week was about my town’s inadequate school budget. This would have been my fifth budget cycle, had I not stepped down from School Committee this past January. I could not do it any longer. I have the book tour and other distractions these days and it was too difficult to give it my full attention. In my town, School Committee is supposed to be part-time volunteer work but it ends up being nearly full-time, and with no pay. It’s not about the money, really, but the job is tremendously thankless, and it was very hard for me to advocate for change while being in that position. And I feel there is a great need for change in my town, as progressive and forward-thinking as it is.
We should not be making cuts to the schools, not if we are as proud of the schools as we profess to be. We should be increasing the budget, and raising taxes to do so. Why are taxes a dirty word? Taxes are how we get our roads, our schools, our national parks, our programs like Head Start and Title I. Taxes are how we pay for special education. Private money is just too unpredictable, too prone to narrow ideology.
This year, the proposed budget includes two boneheaded items: reductions in our Performing Arts program and the hiring of a half-time Board Certified Behavioral Analyst (BCBA) for the kids on the autism spectrum who are not in the substantially separate programs. This is a 20-hour staffer for up to 60 kids! At 7 schools! I was appalled, so I spoke at School Committee last night, as a parent. Very weird to be on the other side of the table.
I talked about how, to paraphrase Shakespeare (I think): For want of a behaviorist, a public school placement was lost. I talked about how Nat has almost never been included in the public schools, even though I am a strong believer in public school, because there has never been adequate behavioral support for his needs. There is no mystery to educating kids with autism and behavioral issues: BCBA’s are a great help, they are the autistic kid’s wheelchair.
I am sick to death of hearing about the Mystery of Autism. And the high cost of special education. It is only a mystery if you don’t learn the approaches. SPED is costly but no SPED is even costlier. Think about it. Where do those people end up?
Poor planning is the culprit. My town did not provide for Nat other than to place him in an expensive out-of-district private school, and I’m grateful for that, of course, but there is a rub: Nat is practically lost to his community because of the much-vaunted Mystery of Autism.
The only mystery here is how to get my elected officials and school administrators to start planning and stop being pennywise and pound foolish.
This means, literally, “One beautiful chicken.” It is something my grandfather used to say whenever something broke. It is a Yiddish expression that is loosely translated, “Better that it happened to the chicken [the thing that broke] than to us.” “Us,” meaning, the family, or the Jews. Better to lose the chicken, slaughter it, whatever, than … The attitude comes from centuries of oppression, Gentlemen’s Agreements, pogroms, Inquisitions, Expulsions, Kristallnachts, Massadas, etc. As a people, the Jews have certainly endured more than their share of abuse, and it is in our DNA to remember that, no matter how much therapy one might undergo.
Anyway, I love “eine shayna capura,” because it is a great way to shrug off one’s feelings about loss. It reminds me that these things are only things, whether it is a plate that broke (a wedding dish broke this morning, prompting these thoughts) or something else not turning out the way you expected it to. Even autism. Even a flaky friend. Even nasty blog comments. Even having a mid-life crisis. It’s not the end of the world. It is just the chicken, not us.
Every so often, I let a new person into my life. I don’t do this easily, because I don’t trust easily. I know the reasons for this, and I’ll sum them up by saying that certain inconsistencies in my childhood left their mark, and so trust comes hard.
But I have had this same experience more than once by now, where I am pursued by someone interested in being my friend, and I am not sure of them for some reason. Maybe I’m wrapped up in a project, or simply content with the friends I already have. But these pursuers persist, and I slowly give myself over to their friendship. And then something shifts, and I realize that this new friendship is important to me. I realize that I liked being pursued. As soon as I have this realization, I begin to get anxious about holding onto the relationship. I start noticing it. I start noticing the dynamic of who-is-calling-whom; who-initiates-what. I think this is known as an “anxious attachment,” and it is a very tough dysfunctional behavior to break. I remember way back when I was 10, and I had my first intense friendship, with someone named Cynthia. I remember when she told me I was her “best friend.” This thrilled me so much that I felt almost addicted to it. I asked her frequently if I were still her best friend. This was my first conscious anxious attachment. Eventually (eight years later) she dumped me.
I feel it happening now sometimes with someone who pursued me and made me feel like I was the finest person on earth. I was uncertain about it. At last I opened my heart, and shortly after, the anxious attachment began sinking its black teeth into the friendship. This person often withdraws. My evil insecurity poisons it. So that’s what I’m dealing with now. A feeling of wondering if I’m a chump for trusting, and the burning shame of feeling not appreciated for being who I am. I probably see these things coming and so I resist these intense new friends, but they get under my skin, especially if they are Tauruses.
I sometimes wonder if my anxious wiring is related to Nat’s being autistic. I feel that they are related; we are both on SSRIs, and we both obsess about things. I wonder if he is free from this sort of pain, because his relationships with people are so much more basic. Although maybe they feel very, very complicated to him.
I guess we all have our own private hells to navigate.
Tomorrow, March 24, is Little B’s eighth birthday. It is also my sister Laura’s. They are both so special to me. Benj was 5 years in the making; Ned and I could not agree on having a third baby, but I prevailed (I often do). I remember telling God that he owed me, because things had been so hard with Nat. I absolutely believed that he was listening, because I was one of his best customers (I have always believed in him and had confidence that he exists).
Well, it just goes to show you, don’t f*** around with God. Benj is not easy, at all. I struggle a little bit with Little B every day, maybe not the same angst I had with Nat, but angst just the same. Ben, my brown-eyed boy, has a quick temper and is highly sensitive to what people say to him. He is a harsh judge of everyone around him. He sees things in Old Testament terms, black and white. He has a lightning-quick mind and a devilish wit. He pisses people off easily, and doesn’t understand why. My Benji is dusted with The Spectrum, in an amount not detectable to a psychologist, but just enough to make him a wildly original thinker, and a real prickly person. Just a little autism pixie dust.
My sister is another quick-witted, hot-tempered thing. She is smaller than me, darker skinned, darker eyed. As children we were extremely close, and we loved each other as hard as we fought each other. We made up a language together. We have the same sense of humor. We can finish each other’s sentences. Like Ben, she also sees things rather black and white, and for the longest time she and I struggled because I was too soft and she was too hard. But somewhere along the way, we figured out how we complement each other, rather than take away from each other.
I find it so interesting that people born on the same day can share certain characteristics. The two of them, Benj and Laura, are so fiery, they are such Aries!
Well my feet they finally took root in the earth
But I got me a nice little place in the stars
And I swear I found the key to the universe
In the engine of an old parked car.
Bruce Springsteen, Greetings from Asbury Park, 1972
Figures that for Bruce the Juice, crooner to Candy, Sandy, Mary, and Windy, and highways, motorcycles, and everything gear-and-grease related, the key to the universe can be found in the engine of an old parked car. For me, the keys to the universe are a bit more diverse and personal. For something to qualify as “key to the universe” in my book (or my blog), it must fit the following criteria: 1) it is a fairly simple, obvious, or common item or concept; 2) it does the job it is supposed to do with utter perfection and satisfaction; 3) it never gets me into trouble; 4) it helps make me hugely happy. Here are ten of my keys to the universe, and why:
1) iPod Shuffle, because it gets me happily through anything boring (like waiting for RK, EMT, INF, or any friend to show up (I’m always on time or early), waiting for boys’ therapies to be done, getting through a workout).
2) Atkins Diet, because it allows me to lose or maintain weight just by following a few simple rules. At worst, Atkins is boring, but you are never hungry. And yes, my cholestrol is actually better than it used to be.
3) Chi Flatiron, because it straightens my hair in seconds and makes it look as if it were always straight.
4) BCBG Girls black suede cowboy boots, because they go with everything, are comfortable, and always stylish.
5) Precious, my Mac iBook G4, because it is always there waiting for me either with interesting email and bloglines or blank screens for me to fill.
6) Lunch at Cheesecake Factory, because it is just nice enough for dressing up, it has the Santa Fe Salad, which always fills me up and tastes great, it is affordable, it is housed in my favorite mall, and you can almost always get a booth. Plus, 6 carb cheesecake!
7) A great respite worker, because they are not afraid of Nat, because they relish working with him, and they give him new experiences and I don’t have to worry for those few hours!
8) The attention of a man I love, need I say more?
9) Trish McEvoy concealer, because I hate dark circles under my eyes and this stuff really works but floats on my skin in the lightest of layers.
10) Dane Cook because he is always funny.
Passover is just about a month away, and it is during the Passover seder that we ask, Why is this night different from all other nights? (In Hebrew: Mah Nish Ta Nah Ha Lilah Hazeh Mi Call Ha Laylot?) Then you talk about all the different things you do on Passover, like sit comfortably (as if you never do the rest of the year), eat matzah (as if I ever would), dip matzah in horseradish (don’t ask), and other strange and wondrous things. Most of the answers relate to the fact that, way back when, in the days of Yore — as in “Yo’re Jewish? Yo’re a slave to the Egyptians, Dude!” — life sucked as a slave, building the pyramids and all, so we should remember this and be grateful it doesn’t suck as much now.
I would say that compared to being enslaved, my life is pretty good. But weekends are often rough for me, because of the lack of structure combined with the infusion of expectations. Everyone’s home; we’ve got nothing to do. So why aren’t I happier on weekends?
But today has been a solidly good day. My question is, Why is this day different from all other days? Why did today feel so good, with so many of the same things happening that happen every Saturday?
Was it that today my focus was at just the right intensity, so that I could see everything that happens to me with just the right perspective? Today, my focus was almost entirely on my boys, and to be honest, I dreaded today because I knew that there was very little scheduled for just me. All I did this morning was go sweatshirt shopping with Little B. But I rarely have a task like that which is just about him, and it was incredibly sweet driving to the mall and seeing his little face in the rearview mirror every so often. And he was thrilled with the gray Gap sweatshirt we found for him, way too big on him (just like Max wears them) and as boring as you can get in terms of clothes, but, hey, that’s what makes the world go ’round, right?
After the sweatshirt, it was onto Lego play and then some cartoons.
Or was it a good day because I had a nice little plan for Nat? I had arranged a “facilitated playdate,” something I have never done but has been on my list for years (this is that list most mothers carry around in their heads, of things they know they should be doing for their children, but have not yet managed to, and they use this handy list to kick themselves every now and then when they need to feel bad). Today I made the facilitated playdate happen, with Nat’s friend Rossi. Maureen, who used to be Nat’s and Rossi’s teacher, came over, with the purpose of taking them both and getting a snack and doing something special (zoo, or bowling). When Maureen walked in the door, Rossi burst out laughing. Rossi is a huge eighteen year old kid with autism, with a very big, contagious laugh. Nat looked happy, too, pacing a bit and eagerly grabbing his coat. Rossi and Nat both had money in their pockets, and Rossi’s mom made sure he knew where his money was, and so did I with Nat, and Maureen kept saying, “Don’t worry, I have been out with these guys a lot!” She was as happy as they were.
Three hours later, they are still out! Not a peep from my phone.
Or was it that Max was so happy today? His friend Yaz came over, with the plan to drop Mentos in Coke and measure the explosions. A true experiment, they were also going to use seltzer and Sprite. The playroom is full of Beevis and Butthead-like laughter, that low-pitched staccato goofy stuff only teenage boys are capable of.
I got to take a nap, so deep and sweet that when I woke up I panicked. Where was I? What day was it? Where were my boys? But Max reassured me that everything was fine. Ned was at the pool.
I fixed myself some Peet’s decaf, and to myself a chocolately peanut butter Atkins bar and settled into my warm windowseat with Precious and decided to figure out exactly why today was different from all other days.
Maybe, as Quai-Gon Ginn said in Star Wars Episode 1 (not the first Star Wars we all saw as kids but the one they are saying is the first one now), “Your focus determines your reality.”
I think I’ll try mentioning that at the seder next month.
One of the best feelings in life is for someone to play with my hair. It is a great high for me. When I was a little girl, this was one of the favored activities with friends and my babysitters, to get out a brush, rubber bands, and barettes and create wild hairdos in each other’s hair. The activity was sometimes fraught with a dash of anxiety, however, because my mother had put the fear of God in me about catching lice. One premier commandment, along with the Top Ten from Moses, was “Thou shalt not use someone else’s brush.” This was followed up with a reminder of how Cathy O’Neil, a friend who had caught lice, had to get all her hair cut off to get rid of it. Being a total girlie-girl, (before that was even a thing), this would have been one of the worst things I could experience. I have almost always had long hair and will have it as long as I can get away with it!
Still, I would engage in hair-play as much as possible. One of my favorite players was my father, who was as much of a “groomee” as I was. My sister and I would set up “Lorette’s,” a full-service salon, where she would color Dad’s nails with chalk dipped in water (our premium manicure), and I would put his hair in various styles. Dad, who is pretty macho, was also a very good sport. And I must say he looked quite fetching in pigtails!
Once I had children of my own — all boys — I assumed that my hair-playing days were over. To my great delight, little Max did not mind playing salon/dentist, a strange combo of fixing teeth and combing hair. And once again I had the great pleasure of feeling a child’s fingers twirling my tresses. Even though Ned is willing to oblige me with the brush, there is nothing like the innocent, agenda-free hands of a little kid.
When Max hit the tween and teen years, I had to retire my hair fun. I couldn’t expect a 12- or 14- year old boy to want to play with his mom’s hair! But this morning I had a surprise. Little Benj started wrapping my hair around his hands while I sat here typing. He found his own particular joy in hair-play by making me into all kinds of Star Wars characters, from Padme to the Wookie to Princess Leia (“bunhead”). Every now and then I would catch the scent of a little of his sweet breath. I maintained my sang-froid and pretended to type, so that he would not realize just how happy this was making me; Benj is not comfortable with too much emotional display. But I wanted to swoon right into my keyboard at the wonderful return of small fingers in my hair!
I will be reading and signing copies of my book at the Barnes & Noble in Union Square in New York, on this coming Tuesday, 3/21/06 at 6 PM, 2 East 18th Street
If you are in the neighborhood, stop by and say hello!
Questions for Neurotypicals
How have you learned to compensate for being nearly incapable of directly perceiving your surroundings?
Surely you must miss the all-encompassing joy of simple perceptual experiences. Don’t try to tell me that all your canned, pre-filtered experiences of sunsets and the like hold a candle to watching a tiny spider crawl across the carpet or rubbing a fuzzy blanket on your face. Nobody would believe anything that ridiculous, you’re just trying to romanticize neurotypicality.
How do you deal with being unable to perceive minds different from your own? Doesn’t that limit you socially?
Have you learned to make real conversation with strangers instead of just measuring them up socially and moving on?
And here is my own send-up to all those who insist that autism is less than, that autistics can’t connect, and need to be fixed. This, for those who don’t know, is Nat, my 16 year-old who has a pretty severe degree of autism, embracing, quite willingly, his teacher, Maureen:
Yesterday the President visited Jason MacElwain, the Greece, NY high schooler on the autism spectrum who shot 20 points in a matter of minutes after being allowed to play for the first time all season. My friend Andrew sent me this article from Rochester, NY, and my first response was that it was a very nice interchange. I felt good for them both, and I am no Republican. I am happy for J-Mac to have the honor of a meeting with a President, and I think what Bush said to him “You can call me ‘George W’” was sweet and appropriate.
My second response, however, was to think of the President’s low approval ratings (37%) which will probably go up a little bit now. Ah, politics!
So now it is my turn to go political. My third response is, let’s hope that this new awareness that the President has for a child with a disability grows and he begins to think about funding public education, rather than making the harsh cuts to education that his budget recommends, the worst in the history of the Federal Department of Education, so that others have the same kind of opportunity to give life their best shot, as J-Mac has gotten. After all, in all its years of existence, the IDEA (Individuals with Disabilities Education Act) has never once been fully funded, while school systems nationwide struggle to do the right thing by their kids, and then all students suffer for lack of proper funding. Having been on a School Board, I know firsthand what cuts to Title 1, etc., can do in terms of denying struggling kids the supports to succeed. I know how schools sweat to piece together budgets that accommodate all kids. And I am sick to death of nothing but cuts everywhere I look! And being the parent of a kid on the autism spectrum, I also know firsthand how difficult it is to get my child the basic skills he will need to survive in this world.
I wish that the United States would set an example for the rest of the world by demonstrating its committment to take care of its most vulnerable populations. Whatever happened to the Social Contract, which this country was based upon?
I’m worried about my little guy, Benj. This seems to be a year where he is becoming more of an individual, and I wish I could celebrate that, but we live in such a cookie cutter society, it is hard for me to feel okay about who he is. I love him so deeply, I even feel it in my guts sometimes when I look at him. We like to joke that he is dessert personified. Anyway, his personality does not fit with his perfect little face. He is such a rigid thinker; one bad experience with another kid and he will never again consider that kid a friend. So his playdate pool is getting narrower and narrower. He doesn’t seem to notice, however; only that when one particular kid can’t play, he gets upset. He is very possessive of that kid, who is very popular, and so I find I am constantly gently pushing Benj towards other kids. But he has so little interest in the other kids, who are largely into sports or XBox. Benj hardly watches any t.v. All he does watch are the videos that Nat happens to have on, mindless Disney Sing-Alongs. I think he enjoys spending the time with Nat, though, so I let them do this. It gives me pleasure to see them together, but their age-inappropriate activity makes me a little sad, too.
But only if I judge us by the rest of the world’s norms. Too bad I can’t tell the rest of the world to F*** off. Sometimes I just want to keep my boys to myself, in the house, safe and sound, my cocoon. Where no one can tease them or mistreat them. How many times have I fantasized about homeschooling them for this very reason? But I know my limitations. I don’t have it in me to spend long days instructing them. I also know that the very thing that hurts us so much — venturing outside — is what is going to make us strong. Nat needs to be in contact with the community to keep the world informed of people like him, and to inform himself of these experiences. Ben needs to be in contact with more and more different kinds of kids so that he can have more friends instead of fewer and stay flexible, grown, and learn. Other kids can benefit from a mind like Benji’s, too. A kid who has invented his own world (Stickfus, a planet made of stick figures) and an entire language (Sticktopian) and alphabet. He remembers all the details, too, each time. All the characters, all their foibles. He has created so many amazing things, I can’t even begin to list them all here.
But why can’t his peers see how wonderful he is? Why does a boy have to be a little cruel, a little tough, and know how to throw a damned ball to be liked in this society?
Why does love have to be so sad?
I raked my gardens today and collected about 6 huge bags of leaf mold and partial compost. Out, out, damned rot! But unlike Mme Macbeth, this lady is none too eager to wash her hands. And lo: there, sleeping just below the mess was this tiny cluster of snowdrops. Oh, the perfume of the cold, dark soil! The tender croppes in the yonge sonne! Tiny green clusters of life ripping through tight gray masses of thatch. My feet sinking softly into the wet, raw, lawn. Everything so new, so tentative, achingly sweet, like the very first moments of life, and love. Happy Spring!