Monthly Archive

My friend’s neighborhood is about to be invaded by adults with Prader-Willi Syndrome.

This, apparently, is a problem.

The issue came to light recently, when the other house on the market—oh, my friend is trying to sell her house right now—sold, to an organization that places people with various disabilities in group homes. And get this: the group homes are in ordinary communities, right next to everyone else. In this case, it is one of the finest neighborhoods in town.

Some may call this inclusion.

My friend’s “neighborhood organization,” created solely around this issue, by the way, calls it a threat.

My friend, who also has a few kids with special needs, is incensed by her neighborhood’s reaction. Knowing my views on the subject, she called me. My advice? Go door to door and ask all the families who have kids receiving special education services to put up signs that say “THIS IS A GROUP HOME.” After all, what is the difference?

The agency that owns the home intends to go door-to-door to talk to neighbors in the community. The neighborhood association sent out emails suggesting that residents should not invite the agency representatives in. Instead, neighbors should wait for the public forum, with attorneys present.

And for what? To keep everyone who is “different” away from this elite group? Perhaps they see the group’s individual approach as a “divide and conquer” approach. But what if the neighborhood organization has simply made statements that only appear to reflect the opinions of all its members? What if the emails that the group sends out ask not for input from the community, but only determine the action that should be taken? What if someone disagrees?

I called a friend who deals with this issue, and others like it, often enough. The suggestion: nada. The group has mobilized, and a relevant state agency, Commissioner included, has already been notified of the neighborhood’s intentions to fight this home tooth and nail. Do they have a case? Well, sure. It’s a case, as long someone makes it one.

So, after a few days of incited work to educate the community, I am calmed by my friend in-the-know. “They’ve made up their minds. They don’t want to hear your side,” he says. He has seen a lot of this before, so I believe him. But I do not want to. These neighbors just don’t want to hear the worth of people with developmental disabilities! My friend tells me this. And this guy is one of the most unflappable people I have ever known.

I do not deal with this realization so well on my own. After all, Prader-Willi… well, kids with Prader-Willi are not so different from my own kid. In fact, he has been tested for it, because he’s a food-loving kid with low muscle tone, cognitive impairment, a sweet temperament, and according to this group, no value! When he grows up, will no neighborhood want him either?

Here is a description of a few Prader-Willi symptoms, in far more detail than anyone wants to read:

____________________________________

Neonatal and infantile central hypotonia, improving with age
Feeding problems and poor weight gain in infancy
Excessive or rapid weight gain between 1 and 6 years of age; central obesity in the absence of intervention
Distinctive facial features—dolichocephaly in infants, narrow face/bifrontal diameter, almond-shaped eyes, small-appearing mouth with thin upper lip and down-turned corners of mouth
Hypogonadism—genital hypoplasia, including undescended testes
and small penis in males; delayed or incomplete gonadal maturation
and delayed pubertal signs after age 16, including scant or no
menses in women
Global developmental delay before age 6; mild to moderate mental
retardation or learning problems in older children

Hypothalamic dysfunction is thought to be the cause of the disordered appetite/satiety function characteristic of PWS. Compulsive eating and obsession with food usually begin before age 6. The urge to eat is physiological and overwhelming; it is difficult to control and requires constant vigilance.
Infants and young children with PWS are typically happy and loving, and exhibit few behavior problems. Most older children and adults with PWS, however, do have difficulties with behavior regulation, manifested as difficulties with transitions and unanticipated changes. Onset of behavioral symptoms usually coincides with onset of hyperphagia (although not all problem behaviors are food-related), and difficulties peak in adolescence or early adulthood. Daily routines and structure, firm rules and limits, “time out,” and positive rewards work best for behavior management. Psychotropic medications—particularly serotonin reuptake inhibitors, such as fluoxetine and sertroline—are beneficial in treating obsessive-compulsive (OCD) symptoms, perseveration, and mood swings. Depression in adults is not uncommon. Psychotic episodes occur rarely.
Motor milestones are typically delayed one to two years; although hypotonia improves, deficits in strength, coordination, balance, and motor planning may continue. Physical and occupational therapies help promote skill development and proper function. Foot orthoses may be needed. Growth hormone treatment, by increasing muscle mass, may improve motor skills. Exercise and sports activities should be encouraged and adaptations made, as needed. Proficiency with jigsaw puzzles is frequently reported, reflecting strong visual-perceptual skills.
Hypotonia may create feeding problems, poor oral-motor skills, and delayed speech. The need for speech therapy should be assessed in infancy. Sign language and picture communication boards can be used to reduce frustration and aid communication. Products to increase saliva may help articulation problems. Social skills training can improve pragmatic language use. Even with delays, verbal ability often becomes an area of strength for children with PWS. In rare cases, speech is severely affected.
IQs range from 40 to 105, with an average of 70. Those with normal IQs typically have learning disabilities. Problem areas may include attention, short-term auditory memory, and abstract thinking. Common strengths include long-term memory, reading ability, and receptive language. Early infant stimulation should be encouraged and the need for special education services and supports assessed in preschool and beyond.
General health is usually good in individuals with PWS. If weight is controlled, life expectancy may be normal, and the individual’s health and functioning can be maximized.
The constant need for food restriction and behavior management may be stressful for family members. PWSA (USA) can provide information and support. Family counseling may also be needed.
Adolescents and adults with PWS can function well in group and supported living programs, if the necessary diet control and structured environment are provided. Employment in sheltered workshops and other highly structured and supervised settings is successful for many. Residential and vocational providers must be fully informed regarding management of PWS (http://www.pwsausa.org/syndrome/basicfac.htm).
________________________________

And really, what would be so bad about anyone with any disability living here? What if the group included those with mental illness? What if they were supported, trying to live a life within a community? Do they not have the right to do that?

All right, readers, this is just not right. Last year I had the rare opportunity to be a fellow in a LEND program. LEND stands for Leadership Education in Neurodevelopmental Disabilities, and I entered the program with no more credentials than the ones you get from being a parent, and perhaps a determined parent. There we fellows spent our Thursdays and Fridays on the grounds of the Fernald Developmental Center, an institution, a constant reminder perhaps of what we did not want for the future. It was one of the most challenging years of my life, and I can only hope that the late-night hours spent struggling to finish papers on disability policy issues were not for naught. The effort should be more, part of a bigger picture. I wanted the training so I could help change the world. And if it takes the rest of my life, I will fight in whatever way I can for the rights of “those people” to live as people not in places like Fernald, not away from “us”, but with “us”, in “our” communities.

You never know when “one of them” is really “one of us.”

Well, yes. Actually, you do. After all, we are all only temporarily abled, and maybe not always at optimum ability level, even at that. It is all a part of the human condition that we seem to fear so much.

This, from the Developmental Disabilities Act of 2000, sums it up well enough for now:

“..disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society… ” [underline mine]

And now the real challenge, when preaching a cause seems so easy… I will try.. be it so hard, to understand and hear the fears of the people who want to keep these “different” people–all “different” people–out. I will try to understand. We are not all so different, and we all have our fears, our prejudices.

Perhaps we are also all a bit different, but we can still love our neighbors.

Hello. It is evening, dark already by 8:00. School started today, the official end of summer as we know it.

Fall is by far my favorite season.

I was browsing through pieces from the past, and came upon this one, from last year. I remember the day, and it was indeed glorious. It makes me anticipate all the more the season we approach in September…

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In some unknown corner along rows of apartment buildings, I found the banks of the Charles River, coated in sunlight, dappled by the shadows of trees blowing in the wind. It was no longer the soft breeze of summer, but a crisper wind of cinnamon and crimson, of school days and football games, of sweaters and hot, milky coffee. Canoes lay overturned throughout the woody marshes, like the toys of distracted children. It was there that I sat, watching the walkers and wanderers, I myself meditating on the wonder of autumn and that symbolic repetition of the seasons. Now we were in the time of year when things begin to fade and die, and for years I had always rejoiced in that. Something in the leaves, the smell of it, the busy, musty beauty of it, always seduced my senses like nothing else, like a fire, like hands beneath my sweater, touching my skin and making me shiver, both from the cold and from the excitement of feeling bare skin so deliberately against mine. Summer revealed too much; spring was too new. But the maturity of fall, covered, but gloriously so, always felt right to me.

So I felt a sense, too, of remembering and renewal before winter’s cold settled in. As the trees turned to red and gold, I threw bread into the river—not a tradition I grew up with, but one that friends share. It seems to fit so well. There I thought about the last year’s amazing changes, the regrets and hardships that gave me so much wonder and mystery. It is from there that I look for new beginnings.
_____________
Song of the day: “Sand River,” Beth Gibbons with Rustin Man

I have just been kissed.

My daughter is awake too late. If I had investigated, I probably would have found the book beneath her pillow (she knows by now it’s better to hide them). She tells me that there are monsters under her bed, and I hold her and tell her that it’s impossible because I sprayed monster repellant in key areas and at all entrances to the house while they were gone. She asks if I remembered the chimney. Yes, even the fireplace below, just in case. She asks me where the can is. I used it all. She asks me where I bought it.

“It’s time to sleep, honey,” I say. She kisses my cheek, then takes her hand and touches the place she kissed, and waves it all over me.

“Sprinkles,” she says.

“Huh?”

“If you touch the place you kiss, you can sprinkle the kisses, so you know I love you all over.”

She made this up herself, she tells me when I ask her, and I swell with that warm pride you know when your kid does something special.

After all, the sprinkles work.

All right, this is the biggest thrill of all. The kids, the three who came home, yes, they are home. For all the rest and relaxation I needed so much, I missed them. My oldest is almost twelve, so he ran in the house, looked around, and said, “Wow. You cleaned,” before he headed upstairs with a bin of Legos he could barely hold. The girls ran from room to room saying “Hello kitchen! Hello basement! Hello room!” Then they put on the Spice Girls (my almost-twelve-year-old loved “Naked” when he was about two and a half—don’t tell his first date). It was “Mama,” and they said it was for me. A dedication. How sweet! My six year old informed me after squirming around a bit that she even missed the toilet here.

So they are home, running around, not dismissing today parts of dinner that will inspire a scowl tomorrow. It’s new again. It’s all new, really, with one not here. Yes, I still miss him. Everything seems new. My oldest starts middle school Tuesday, and needs a pile of binders and folders to organize his life in exactly the way that every other kid in sixth grade will be organized. I think he grew. He wants an electric guitar. I thought I had talked him into the acoustic, but apparently I created a monster when I suggested guitar at all. The girls have slipped the Spice Girls CD into the karaoke. They already know all the words, and I know which girl grabbed the mic, and which one grabbed it back. There is a mish-mash of musical bits all over the house right now. Joe Henry down here, Linkin Park in my son’s room. I love the noise. Some noise is quiet now, but in our hearts, always here.

My friend’s washer broke, and she is coming over to throw her kids’ laundry in before we drink some coffee on the porch and watch the kids. They will be looking for the two-year-old neighbor, who has been checking daily to see if my kids are home to take a walk with her. The next-door kids should be back from Colombia tonight or tomorrow. The sky is bright pink, and the kids are running down the sidewalk, then climbing the Japanese maple in the backyard.

And it is true: my house is clean, maybe even inviting. It is really quite remarkable that I accomplished anything at all, considering that I feel refreshed after what felt like nothing but luxury.

But this, this is luxury: small hugs so big they embrace the whole world.

All right, one last night of decadence before my kids came home…

It was Saturday. You already read about the early Oyster Band part of my evening. I went on to finish the “Freedom and Rain” album. Just fabulous. I always love it. I love the pissed-off, flip, glad-I-figured-you-out “thank yous” in “Valentine’s Day.” She throws his clothes out on the landing so cheerfully it breaks your heart. So much to love in that album.

But I still couldn’t get “Night Comes In” out of my head. By that time, I had listened to June Tabor’s version a good many times, sort of fixated at first by that “lose my mind and dance forever” thought. Other lyrics drew me in more, though, calmer, more introspective thoughts. I decided that if I did not actually own Richard and Linda Thompson’s “Pour Down Like Silver,” I could at least attempt some plays of their song on Rhapsody. Sound not as good on my laptop, but lying on the dining room floor, it wasn’t half bad. Understatement. Slowed down, no longer mercury, now really silver.

All right, I get it. Tired, lying in the dark early in the morning. I get it. Wow.

It’s a little after 8:00 on a Saturday night, and I’m in my car, see the sign for the Pike. I pass through the normal money grabbers, and hop on, just so I can drive fast without stopping, at least for a few minutes.

June Tabor’s clear voice pours out, “Dancing ‘till my feet don’t touch the ground…” and indeed my feet touch nothing that I can perceive, and my heart leaps. I think water, want to dive into it, swim deeper deeper. I want passion. I want so much this Saturday night. But, in fact, it is already all here.

I have to wonder, this is so unlike Richard Thompson’s version of his own song, so much lighter, airy, in fact. Night does come in, as it inevitably does, but here it’s not silver; it’s mercury.

But now I’m not thinking, driving, faster than maybe I should, around Storrow, nonstop around the Charles, the lights, the night. If Thompson sings this with restraint, the Oyster Band lets it loose, flying.

I know the Thompsons’ album, “Like Some Cool River.” Wish I owned it. A young Thompson emerges spiritual, heartbreaking, I think around the time he and Linda converted to Sufism. Is this why the pensive quality of his version? May well be.

But tonight, I fly back up the Pike, come home, eject the CD from my player and quickly put it on in my kitchen, where my desk is. I have to write about this, can do nothing else. I the song back on repeat, not wanting it to end. Perhaps it is my obsession that keeps me from getting tired of it. No, no, not tired at all. This repetition does not bore me; rather, I find something more each time it repeats, deeper, deeper into the music. The song ends, spins back, and I know the voice is there. The ethereal Tabor soars above the driving rhythm, and I am transported well beyond the capacity of my own words. This, surely, is sublime.

—————-
Now playing: Oysterband - Night Comes In
via FoxyTunes

It may well have happened during the Lean Cuisine habit my mom and I called dinner, but I decided not to hang up the phone on the woman who told me I had won free dance lessons. The call came at a time in my life when I was bored working temp for a nepotistic organization that really did not require a replacement for the incompetent woman who had broken her leg. My thought at the time, as it was with so many things back then, was, “Why the hell not?”

So I found myself that Friday after work at the Gateway Dance Center, meeting Mr. Jeffrey, who would be my private instructor. Mr. Jeffrey wore a coat and tie, and had been out back smoking when I was parking a few minutes earlier.

A little cheesy music, a room full of senior citizens and much younger dance instructors, and I was waltzing within minutes.

Now, you have to understand, I’ll do just about anything once. In this case, I found that I actually liked learning the steps, and wasn’t bad at doing them, so I made the appointment for my next lesson quite happily. I could imagine that it was the type of thing that could actually be fun with a little better music.

Back at the office, I routinely finished the actual “work” part of my job around 10am. The woman appointed to be my supervisor always seemed flustered when I went to her office to ask what I needed to do next. The man whose secretary I was supposed to be was even worse. “Now, we know there is plenty to do. Mail always takes Angie until after lunch…” He said this while hitting a little golf ball into a cup on the floor. You think I am kidding, and I am not. Angie hobbled in the first day I was supposed to work. I saw that saccharine smile that hid the personal phone calls and Secret Santa planning that went into her job. She kept a candy jar on her desk. Only Angie was not crafty; she was just inept. Without exposing the large organization that this inbred mix of humanity worked for, I’ll just say that it explained why it took such a long time for things to get done in a large segment of many corporate operations around the area. I was working among the people who were delaying things, and probably contributing to push the economy into the recession that took hold around then.

Some recognition of internal inefficiency had been made by the higher-up management, but no one around there was getting fired or reorganized. So what to do? The answer came in the form of an outside firm from Israel.

One day, I was sitting innocently at my desk reading Huysmanns’ A Rebours, a sufficiently snooty, yet decadent novel, when my supervisor approached me in front of a whole group of the Israeli employees coming back from a break.

“What do you think you are doing?” my supervisor demanded.

“You said you didn’t have anything for me to do. I’m reading.”

“You can’t read on company time!”

“Please, give me something to do? I feel guilty doing this, anyway. I’d rather be helping out.” [I'm not sure I really used these exact words; it sounds a little forced, but it's the general idea I tried to convey several times while I worked there.]

“I don’t have time to figure that out!!” She went in her office and slammed the door.

I was slightly shaken, but after a minute, I realized it was a comical exchange. I went back to my book, but a little more discreetly. I had heard whispers about the fact it was in French. Didn’t want to upset the gravy boat.

Turns out I wasn’t the only one who thought the whole thing was funny. In fact, it was good enough to get me a date. Within a short time, Itzik the knee-injured, soccer-playing computer whiz and I were meeting for lunch, then for evenings after my ballroom dance lessons. His fellow Israeli friends were great, and not all related to one another. They danced, too, although not ballroom, and had nice parties that I went to. This mingling made me even more a suspicious character around the office, so Itzik and I decided not to meet at work anymore.

I kept going to my lessons. I was only supposed to get ten free sessions out of the phone deal, but Mr. Jeffrey told me that I had talent, which even I kind of thought was some sort of a hook to get me to buy something. Mr. Jeffrey said he thought he could talk the studio managers into just five more free lessons. I made my next appointment. We were doing swing, Latin stuff. Rhumba was fun. Tango?… Well, I liked the tango. Fun fun fun.

Mr. Jeffrey had a way with words, despite his humble origins. He was from a town I knew only too well as a speed trap on the way up Highway 50 toward Linn, Missouri, where my dad had grown up. Someone had smoothed Mr. Jeffrey’s speech and taught him to dance, although one day, while he was sneaking a smoke in the parking lot, I started talking to him. Seems that could have gotten him fired.

His accent changed, and he was the kid I knew he was. Yes, his name was Jeff, and he figured out he had a pretty good thing going. He told me I could probably teach there, too, but that they really needed more men. He told me that even if I didn’t want to teach, I could get a great discount if I had any older neighbors or relatives from a retirement community who would pay for lessons.

Itzik had no interest in ballroom dance, even after he was off crutches. The temp job ended, and I went on to other things, interviews, grad school applications. He was a handsome guy, but after we went to the circus and he hated it, I knew he was probably not the right one for me. After High Holidays in Israel, he came back telling me that his mom had consulted a matchmaker, really, and set him up with a nice girl. Great. Well, I knew he was homesick, anyway. So much for dreamy-eyed evenings out. Just as well. A few weeks later, he called me when he had a cold. I told him he had a lot of nerve calling me just so I could make him feel better. Humphh.

And the ballroom dance lessons? Mr. Jeffrey was replaced by another guy who tried to be a little too charming. He didn’t dance well, either. When the studio manager suggested that I could pay for the “full” dance lesson package by cashing out life insurance, I quit. I danced later here and there, enjoyed knowing something when I had the chance. Then I got married to a non-dancer. I sometimes get the idea in my head now to try it again.

A couple of months after my last lesson, a detective called me. It seems that Gateway Dance Center had allegedly been talking senior citizens out of their life savings in exchange for the smooth moves of Mr. Jeffrey and his friends.

One thing, though. I knew it was kind of a scam, but I liked the dancing, and I enjoyed many of the older people who went there. They told me stories about how the dancing made them feel young again, stories of past dances that connected the most memorable moments of their lives together. One woman sat outside with me one day while she waited for her ride. She told me that no one visited her anymore, and this was something fun, even if her family didn’t approve. She said she thought it was funny that these “young people” (at the studio) didn’t realize she knew exactly what they were up to. I asked the detective if he had talked to her. He said that the family was very upset.

I still wonder about her. It was sad, sad that Gateway Dance Center wasn’t something more honest, but sadder still that the music–even that music–had to stop.

It may be due to years of the maternal mantra about eating a healthy breakfast, or perhaps because I found it was actually true that my day went better when I ate first. I do not skip breakfast. My morning latte habit hardly helps to get me going in the morning without a bowl of oatmeal, or something—but please, just not cold cereal. Too many Rice Krispies left drowning despite their desperate cartoonish calls to be eaten, I guess… Nonetheless, this morning, seeing a sole banana left lonely on the counter, I got out the box of Kashi and opted for something healthy, if cold, before my bike ride.

Of course, it is Sunday, and peeling the banana could remind me of nothing else on a day like today but the Velvet Underground.

I went for a walk once in downtown Framingham on a Sunday morning a couple of years ago, and realized just how many churches there are for such a small area. It was busy, and as the morning grew later, the foods cooking, garlicky, wonderful things. Not the “Sunday smell of someone frying chicken” that Johnny Cash sings about, but indeed something cooked for comfort, something that I was also not going to eat, something more of some longing that could be what Brazilians term “saudade,” something more familiar now as I have lived here for a while and have found these sidewalk scents a habit. The people gathered on the streets were dressed up for services, mostly, except one crew I saw in the middle of downtown. It took me a while to figure out that they were gathered for services of a different sort, namely, methadone.

The Velvet Underground disk reached about halfway through “Venus in Furs” before I realized I just wasn’t in the mood for this album this morning, much less Deleuze-like contemplations about that particular song. I really did not feel like hearing “Heroin,” or thinking about methadone clinics or wishing more, like Kris Kristofferson, that I was stoned. No such angst this morning. What I wanted was to get on my bike and ride.

It didn’t take long, after waiting for a train to pass, until I hit my stride, breezing down 126 through the familiar Sunday smells that I mentioned earlier. I do enjoy this, like feeling the street and seeing the people out walking, hearing the music of different languages, music out apartment windows, stores, before I find myself in more wooded territory, smaller town feeling, into Ashland, Holliston. This is such a Sunday morning, somewhat sunny, not always, blood pumping into my legs as I hit another hill coming back.

This is strange to me to wake up and do what I want to do without looking out for anyone else. It is my vacation, of sorts, a respite from the days of thinking about who else needs something. I love the ordinary days, love taking care of the people I love, love it when my kids wake me up by jumping on me in bed, especially when they are not looking for anything but hugs. But right now, I love this, too, love the luxury of locking my house and heading out for an hour-long bicycle ride with no need for babysitting or getting back soon, love the luxury of saying yes.

Out of the living word
Come flower, serpent and bird.

All things that swim or fly
Or go upon the ground,
All shapes that breath can cry
Into the sinews of sound,
That growth can make abound
In the river of the eye
Till speech is three-ply
And the truth triply wound.

Out of the living word
Come flower, serpent and bird.

–Howard Nemerov,
“Book of Kells”

I was reminded this morning that I should have awakened in Dublin. Yes, I was going to go, but certain circumstances short-circuited my plans for this year. So instead of interviewing public health officials about services for children with mental health issues, this morning I found myself riding my bicycle down 135, west of Wellesley, half regretting on a couple of hills that I hadn’t gone on a shorter ride before I get used to doing this again, but loving the pedals and the wind.

I used to ride everywhere. It was great in Boulder, the one place I was more likely to get hit by another bike than by a car, the one place where police on bikes actually stop speeders. On bikes. So, if Boulder was a great place to ride, my own hometown stank. And yet, I reached a level of obsession about it there on my clunky old bike that was something like the laps I swam, and the verses I copied in calligraphy. It seems odd—I was in high school at the time—but I found great solace in repetitive things. It may have been some early effort to control one thing around the chaos that inevitably seems to track me down. Perhaps.

I was looking forward to seeing Dublin, absorbing the lyrical sounds of the street, but I’ll do it sometime soon. I have to. For one thing, I would like to work on my degree there. For another thing, I remembered that Trinity College holds one of the treasures that I have always wanted to see: The Book of Kells.

I have always loved typefaces, from the time I was very little. It was that love that led me to pen and ink, copying letters, words, creating something from them, from the way they looked. I disliked the original verse given for practice by the writer of the calligraphy instruction book I had gotten for my thirteenth birthday, so I went searching on the shelves at home. My mom, avid reader that she is, had more prose than poetry. A collection of Shakespeare sonnets was fine, but too square for me to make interesting on a page. It was in some sort of anthology of English verse that I searched for something sing-songy, something that sounded sweet and varied to my fourteen-year-old mind. I discovered Dylan Thomas. The lines ring so different to me now; back then I just thought they were pretty, and filled the page nicely. Now, I read “rage, rage, against the dying of the light,” and it seems all too relevant. But then, then, I just copied beautiful words, finding the shapes that suited them best.

The style I preferred for the Dylan Thomas poems was a rounded, simple one that still appeals to me. It does look Celtic, suitable for a Welsh poet. It is actually quite similar to the script I would have seen in the Book of Kells. But I left my words simple then.

My peculiar fascination with illuminated manuscripts grew as I learned more about them, and sat copying, cursing the wrong stroke that occasionally ruined a day’s work when my mind wandered. I learned, in Edward Docx’s novel, The Calligrapher, that there is a patron demon—not a saint—of calligraphy. Titivillus apparently waits for inattention to strike the scribe. I can imagine the monks wary of him, in the intricately detailed work they did, half methodical, half fanciful as the initials took on lives of their own through the creatures that came to inhabit them. I admired the illuminations so, tried something like it at times, but not often. I know nothing of goldleafing, can draw only moderately well when I try, and had no sense of when to stop. My letters grew like vines down the page, wrecking the effect. But it was fun to try.

Today, on my bicycle, it was not calligraphy that I was thinking about. It was Howard Nemerov. I remembered the poem about the Book of Kells from years ago, years when I was a transfer student and he was a resident poet, both of us passing one another daily at ungodly hours of the morning. He seemed to enjoy being up then; I had to go to class. I did enjoy walking at that hour, tired though I always seemed to be, but finding time to drink coffee.

One day, I said hello, as I always did before I knew who he was. Someone told me once, and it occurred to me that someone had given me a book of his poems. So, the next day, I asked Howard Nemerov if he would mind signing my book. He told me that he would be honored to do so, and that I should meet him at his office the next day.

The next day arrived, and I took the book in, searching through the English department for the office number he had told me. He was there, as promised, and took the book.

“I don’t know what happened, but the title page is stuck,” he said, easing it open. When he did, we saw that the book had already been signed.

Not only had it been signed, but the previous owner of the book—it was apparent now that there had been one—had altered the title. Instead of “Collected poems,” it read, “Collected shit…”

I may have turned several shades of red to purple—I could never know. I did see the look of surprise and momentary sadness on the poet’s face. ”Well,” he said, “we all have our critics.” He signed the book on another page, and handed it back to me.

I remember nothing of how I got out of his office, although I imagine it was quickly, or what I did at that point, but I do still have the book. When Nemerov died, stories from his students appeared in papers around town. He helped budding writers and English majors, patient, though critical himself, it seems. I never knew. But I do like the images of his “Book of Kells.” It suits the work well. I may have thought of it if I had gone to Dublin this week. But of course, anytime I see Nemerov’s poems now, I always think of the incident. I wonder what he thought. I do know what I like to think. I like to think that maybe that five-minute encounter was good for some story, some laugh at a mortified early-morning undergraduate.

I have just been informed by the perfume police at ciao.com that the scent I have worn for twenty-four years is not meant for the daylight hours. After all this time, now they tell me.

I remember when I first wore it. I was in college, feeling smart, no doubt. My first boyfriend, normally a nice, laid-back California guy, dragged me along like a photojournalism groupie to burning houses and animal shelter fundraisers. I was away from home. I switched majors once or twice, liked economics, spoke French pretty well, but moved to the German department and its friendly Stammtisch at Shakespeare’s Pizza. My boyfriend’s brother did something or other with computers for the army in an office somewhere underground, beneath the White House. We drove to Washington, and he got us in to the Rose Garden to see Mitterand and Reagan. Not up close, but with a few school groups and other honored citizens. Maybe I could have been more political about the whole affair, but I was a starry-eyed not-yet-twenty-year-old girl from Missouri. They were speaking French, over a microphone, in public. It was exciting to me. I had visions of an international life, cities. My mom had sampled a new perfume in a magazine insert, and went to the only place in St. Louis that was selling it, downtown. She thought it would suit me. Maybe I was spoiled.

“COCO conjures up the baroque details of Mademoiselle Chanel’s rue Cambon apartment. Above her Paris showrooms, gilded mirrors, Venetian chandeliers and lacquered Chinese screens evoked a lush, fanciful atmosphere. COCO is Jacques Polge’s interpretation of the East, its roots firmly planted in Venice.” Wow. Sounds pretty exotic, even decadent. After reading the Chanel website’s description of its product, I really wonder if this is what my mom intended.

It was 1984, the year I started drinking coffee. My brother graduated from high school, and my dad was diagnosed with cancer. I wrestled with adulthood, finding ways to spend time that I had never before considered probable, or even possible. Dorm room philosophical discussions about Winnie-the-Pooh went on well into the night, with the English Beat in the background. The Julie who lived directly below me suggested taking the Poohs to the columns, a post-ancient ruin from the fire in 1892 that burned down something called Academic Hall. The wise Poohs contemplated serious matters from the columns, and we sat beside them, gazing at stars and drunken frat boys, maybe even a pre-Hollywood Brad Pitt, thinking of what life would bring us. Julie did have a varied life, as I heard from letters over the years: grad school, a Soviet husband, Soviet ex-husband, Hawaii, a child. So did I.

I quit school after the next year. Less than a month later, my dad died, and I finished my work in the high school. I had been the goody-two-shoes, the fat kid feeding attendance records into a computer after school, and typing course descriptions and helping in the summer school during my summers. The principal asked me if I wanted a full-time job. I told him no. I wanted to work in translation. So I did.

Sometimes I wonder if the Coco went to my head. The scent was sublime to me then. “Mandarin and Orange Blossom create a spicy atmosphere in which Bulgarian Rose and Indian Jasmine evolve over notes of Tonka Bean and Sandalwood, followed by a whisper of leather, wood and Vanilla.” Whatever the combination that enchanted me so, I always felt a little bit beyond myself wearing the perfume. And I wore it, not obviously so—at least, I hope—but nearly always. Once, forgetting that I was headed out not for coffee, but to clean up the yard, I avoided the regular attack of bloodthirsty insects. It evidently also worked as mosquito repellant. Why not wear it all the time? So I did.

Years went by, jobs, life. I always wore that perfume, still do. I was young and loved cloche hats and wanted a Vespa. It fit that well, even if the Vespa now looks more like a minivan. It made me feel less drab while I sat watching soap operas and nursing infants, something now long past, too. I wore it in Paris and Vienna and Oklahoma City. I wore it yesterday. I don’t know why it has been such a constant thing, didn’t even think of it until I found myself without ideas, clearly clueless about appropriate writing topics for the past several days. I pulled out a card from a motivational writing tool that I found half price at Barnes and Noble. It said, “Follow the scent.” Coco was the first thing I thought of. So there it is, my friends, my entry for today. I do still love it, that wonderful aroma that somehow suggests that I should run down the stairs and answer the door right now. So I shall.

Today, on this beautiful summer day, I am on day two of my time without children. It is time to paint. No, not artwork right now. I really don’t know exactly what I am doing, I admit. This is my first attempt at exterior house painting, and I am reluctant to get too high on the ladder. Still, the chipping paint has been irking me for some time, and I can do something about it right now, before winter comes to battle the woodwork again. Yesterday’s downpour was a bit unfortunate, but I have time and desire to make something better.

At some point in my life—actually, one night in Vermont, when I was sick of peeling wallpaper—I decided to do some simple home repairs. The wallpaper was easy enough to fix: I found the pieces that had been left on the floor, and glued them back. Voila. It dawned on me at the time that the house could be much nicer without that wallpaper, historic though it may have been, but we were about to move, and I let things be. It was in the next house that I made my changes.

The next house was nice, but not my dream, a dark house whose front did not face the street, but a path along the side of the house. No one came to the front door. It hardly mattered, though, because the house was set back from the street a long way—I could not see the street from my driveway without walking about halfway down. I realize that for some people this is a dream, but not for me. We were in a suburban neighborhood, but so secluded that we barely saw it. For someone who enjoys sidewalks and city bustle, it was hard. Harder still was the austere feeling of the house itself. Maybe for real estate purposes, maybe for personal preference, the previous owners had painted many walls a stark white, where the dull browns and overbearing toile wallpaper were not left up. It was a dark, sad house, which may explain why the previous owner was going through a divorce and making wine in his basement.

I did have to admit, though, there were some nice things: a sun porch with a cathedral ceiling, a wall of rhododendrons that were blooming magenta flowers when I saw the house, and the mix of seclusion and convenience that I knew would be a necessity if I really wanted to move that summer.

I had to spend a lot of time in the house. Before we moved, I had sought out the special education services my son would need. The town had set up full-time home therapy for my son, to start the week after we moved. It was incredible, but it also meant that I had to stay home for most of the day while the services were going on. I was new to town. I couldn’t leave the house to seek out the other kids in the neighborhood, and my own were too young to go wandering alone. So I decided to make things better. The first thing I did was to start working out. The other was to change the house.

I moved furniture around, but the house was still dark. On one of my first weekends that my then-husband was away, I realized that paint could make things better. I loaded up the kids, and headed to the hardware store with a plan. It was Friday night. By Sunday morning, the bathroom was jalapeno green and beautiful, if I do say so myself. To this day, my older son asks me if I will paint the bathroom here the same color.

I did not stop there, continuing over the North Carolina motorcycle week to paint the kitchen sunshine yellow and an orange whose name escapes me. There were bricks exposed in most of the kitchen, and I painted yellow above them. In the part without bricks, the orange went below the chair railing. I had a sunny kitchen. I hung a painting. I found a print in Montreal—a fairly common one, with a clown inside an orange peel, selling Campari. Color. It made all the difference to me. I patted myself on the back when several months later I saw a similar color combination in Architectural Digest. Trendsetter, I was… (well, actually probably not, because those articles must be shot long before the magazine comes out). But I loved it.

Many came and went from the house with their own opinions, but it was clear that the house was becoming mine. I ripped down the impractical shelves in the laundry area and put up ones I liked better. That was the next home improvement. Nothing was stopping me anymore. I repaired a stair. I patched a crack in the concrete. I stained a deck. I learned how to take the hinges off the door from the garage to break into my old house. I mended the drywall that my son kept destroying in his room. I repainted. I put up padding on his walls. I installed a light. Fall came, and my son started going to a half day of school.

In the midst of all of this, something strange was happening to me. I was playing my music a little louder, and started helping with an ESL group in the school. I started to meet people, learn my way around. It was so different from Vermont. There were other parents to talk to about our kids with autism. I could run to the grocery store for rice milk after dark, and I had figured out the short way to get there.

Other things seemed so much clearer, too. I realized that some things, things I had always taken as my burden, were in fact simply problems that needed to be addressed. My younger son had a good program at last. Things there were going well then. The challenges at home persisted, though. It was a long journey, looking for the right thing for my oldest, always thinking a gifted program or a sibling club for children with special needs would make all the difference for him. We met with therapists in Vermont around those issues. My older son drew a lot of pictures of his anger. Well, someone visiting our home did mention that she thought he might need more help than that. The girls were bright, but they never attacked the way their oldest brother did. He was a whiz at so many things, but so quick to anger, so insatiable when he was angry. A lot of changes came from the move. Maybe he was reacting to those. I talked to his teacher ahead of time about the fears. A fire alarm could set him off for days of tears and refusal to go to school. A dog bark could send him inside for the rest of the day. It did seem like a lot of things set him off. What was happening?

As it had for some time, a tornado raged inside my house. In the middle of one, I called a therapist who was recommended on a listserv about special needs. He was supposed to be the one to calm the storm for kids who make them. We made plans, tried to stick to them. It never seemed to be enough. The daily battles continued, then the tears, the late night talkativeness and the amazing Lego creations after midnight. He seemed an unusual child, intense. He was the challenge, the joy, the indigo child, the explosive child. There was a section in my library devoted to how to parent him, nearly as big as the one for his brother. It was hard to see, until my son with autism was receiving a visit one day from the program consultant. She pulled me aside and told me that she considered it a crisis. Wow. She was worried. She asked me if she could call the therapist. She did.

So, the next week, when my younger son was visiting our new pediatrician, we chatted. “How are the other kids?” Oh, fine, well, mostly. Actually, it was kind of scary. I said so. Daily threats. Rooms torn apart. A kid who loved to talk and take things apart, and could make detailed plans for intricate machines. Something set off bells in the fine doctor’s head. Yes, I went back to talk to him. In the weeks to come, everything inside the colorful walls began to change. I started writing again—something I had hardly done in years. As I did, it all began to make sense, and I kept writing trying to make it all right. It was. It was all right. Whatever it was, it was going to be better, and it is. It is better. Different, but better

I looked at the date today and realized that I have hardly written in the past ten days. It made me wonder. I thought I’d be full of thoughts at this time. True enough, but words just did not come out of them. Sometimes, though, it is hard to put words to things that have not yet started to make sense. My little boy left just a week ago today. All right, he is not little: he is ten years old. He is heavy. He actually is pretty big. And strong. I wrote about him before, anticipating the day. The day came, and I thought I would leave it there, move on. But it has taken a little longer.

I saw my son off last Friday evening, a strange day, but all right. I went briefly to a cookout for his camp. Friends met me later, other moms who have kids like mine, single moms. We said we should have told the waiter that we were exotic dancers on our night off. We did yoga—it’s close, right? I went home, kept busy all weekend, a bit dazed, then came home Sunday. The other kids showed up without their brother.

The quiet in the house at first was a relief. It can be all-consuming to care full-time for someone whose needs are enormous. I had taken it for granted for so long, it was a relief not to have to remember so many details, at least the first night. The next day seemed even quieter, even with the other kids. And the next two, nearly empty. I made enchiladas, one of his favorite meals, and my youngest girl just started crying. This, from the one I had deemed least likely to be upset by the change. Maybe the others were not quite ready to cry yet. Maybe I wasn’t quite ready, either.

Tonight, it feels right. He is here now, visiting for the weekend, thrilled to have risotto (of course I planned the menus thinking of him), and to take a bath. He is making the noise that fills the house, the same noise that in all truth annoyed the hell out of me sometimes, but a true indicator of his presence, sweeter now that I haven’t tried to sleep through it in a few days. Now, on some weekends, he will still come home, and his sounds will fill the house again.

I was not expecting to be hit so hard by his absence. I knew that one day, the needs would be great enough that I could not handle him on a daily basis. Already, it had become nearly impossible to find personal care attendants who were able to do the job. I attributed it at first to a general shortage of workers. There was even legislation passed to help the situation: it must be a big problem. I found thirty-two people to interview, nonetheless, and hired ten. Of those, eight quit before the first day, and I had to fire the other two. Wow. Harder than I thought. I had a great idea during last year’s program in disability policy, finding help for families who need an extra hand to keep the people we love at home. It is a problem, an enormous one, one I felt we could make better. One day, I was speaking with a man who had been involved in the independent living movement for years. Yes, people should be able to live in their community, and should have the supports they need to do so. But sometimes, he said, to my surprise, it is nearly impossible for the community to support everyone. In our case, after the last person left one day, feeling guilty enough that she never came back to say goodbye, I knew that we had reached the end of the line.

Behavioral challenges, safety concerns, limits to mobility, few self-help skills: these were the things I tried to help my son overcome. So many people tried. I miss those people. I miss the smiling young faces who came to teach, to play, to help. I miss the therapists and teachers. I counted once how many people had come into our home to work with my son. At age ten, the number reaches near 100. It may seem hard to believe, but the turnover is enormous for so many reasons. It is a job with a “Puff, the Magic Dragon” quality to it at times. Other times, budgets get cut. Sometimes, people just burn out, and sometimes it is far from pretty. Many times we had three and four people coming to the house on a daily basis. I loved so many people who came into our lives because of my son. He brought people whose capacity for love and patience was greater than I sometimes experienced. It was a thoughtful world, despite the constant fight for the help kids need. I remember each and every one of the people who visited our life—wish I had a picture of all of them. These people became so much a part of the scenery, a difficult relationship to negotiate at times. Professional helpers could not be family, were different from friends. They leave when services end, and yet, they are so much a part of our family, if an indefinable one.

So, some things change. There will still be people who help my son in his school. We will still know them. I do this with the hope that he can have the life he wants, surrounded by people who care about him. It’s nothing more or less than what any parent wants for a child.

I miss him. He is upstairs now, already in bed. It feels right with him here, even for a few days. It is a guilty relief, to know someone else has to do it every day. It will take a little while before it feels right for him to leave, too. It will take some time for this to make sense, but already, knowing that he can come home, already I know that in many ways, he never really will leave.

Life goes on.