Mr. K

When Mr. K got out of the taxi and came to the door to speak to me, I knew there was trouble. His complaints were many: Hart was disrespectful; Hart had used bad words; Hart had threatened him. I listened carefully. I promised to speak to Hart and I pointed out that there was a reason that Hart attended a special school. More importantly, he was NOT TO RESPOND to provocative remarks, or in fact, respond to any remarks at all.

A few days later, the doorbell rang again. Hart had refused to sit in his seat and wear his seat belt. I could feel my blood rushing. "Mr. K, you cannot drive the cab unless Hart is safely in his seat. Please pull over immediately if this happens." Mr. K was not appeased. "But, I will be sitting there for hours!" I handed him a Post-It note, "If Hart is not sitting properly in the cab, you must immediately stop the car, phone me on my cell phone, and I will come and pick him up from you."

The assurance of my cell phone number worked, sort of. Mr. K would phone me, rattling off a litany of misbehaviors, I would cut him off, ask to speak to Hart, issue dire threats and then wait in the driveway to save Mr. K. the effort of getting out of the car to complain.

Then, one Friday, it was all over. My cell phone rang . . . Hart's social worker asked to me to come pick up Hart at school. Mr. K had arrived, taken a few choice expletives as Hart approached the cab, and simply turned around and driven off without a word, or a passenger. I could only feel some sense of relief as I headed towards school. Clearly, this was not working out.

En route, my phone rang. It was Mr. K! "Yes, I am sure it was very offensive." "No, I do not know why he does that." "Yes, I am sure you felt justified." I felt very tired and defeated. "Mr. K, Hart attends a special school. You understand that Hart is ill, don't you?" "THEN HE WILL TAKE A GUN AND KILL ME."

This is the kind of remark that parents of typical children will never ever hear. Sure, strangers feel free to weigh in with their fail-safe discipline techniques. Other children feel affronted by my kids' behavior. But this, from a cab driver hired and specially trained to transport special needs children to school? From a coach who refused to make any accommodation for Hart whatsoever? From Jeff's special education teacher who called me "a bored housewife who needs a hobby" at an official IEP meeting. From a principal who slammed the door on me when no one could locate my child when I arrived at the pick-up time?

Mr. K's exit sent me into a funk. Do the cab drivers, skating coaches, teachers, principals think they are letting me in on some secret? Believe me, I know how difficult Hart and Jeff are. In fact, I know better than anyone else in the entire world.

I would have wallowed in this pity party for myself, had I not come up with a little mental exercise that proved to be quite therapeutic. I made a list in two columns: zeroes and heroes. On one side, I listed the names of the Mr. Ks of the world. Not the thoughtless strangers, but the real culprits: people who should know better and still don't get it. Then I listed the heroes, not just the good teachers, doctors and therapists but professionals who have gone way beyond the call of duty. And the accidental heroes, ordinary children who have taken Hart or Jeff under their wing, caregivers who have shown extraordinary compassion and affection for our family and unstinting dedication.

Truthfully, the "zero" list is very long. Depressingly long. The hero list is much longer. To wit, a few examples:

Stephanie O'Connell: After a year of legal wrangling, Jeff transferred from public school to a specialized school for children with learning disabilities. Within a few months, the principal and dean informed me that Jeff's behavior was just too disruptive and he was on probation. Stephanie, Jeff's teacher, took matters into her own hands. She was determined to make her classroom work for Jeff. She lobbied successfully for additional services for him, an aide, occupational therapy, frequent breaks. It was she who opened the door to reading for Jeff by her creative approach. Years later, I asked her why she had gone to such great lengths for one of her pupils. "I loved him, I just loved him," she told me.

Kerry Murphy: Hart is a capable and dedicated figure skater, but a difficult and uncooperative student. Kerry always makes sure that there is an extra teacher or assistant in Hart's class and some special stickers or prizes to encourage him. When I ran into scheduling difficulties and considered moving Hart to another rink, Kerry said, "We want Hart in our program and I'll do what it takes to make it work for him."

Leah Okumura: Leah started babysitting for us occasionally when she was still in high school. She took care of the boys for seven years, until graduate school and marriage took her to Boston. Leah endured all manner of high-jinks, but she always came back. Her composure, her good sense, evident even at age seventeen, amazed and inspired me. One down side: she set the bar impossibly high for all other caregivers.

Leah and Jeff in Boston, August 2006

Charles Fox: Charlie does this for a living. He is an attorney specializing in educational issues for special needs children. Charlie has taken hysterical phone calls from me at all times of the day or night. He shepherded me through a long and protracted legal battle, and a few short, unprotrated ones. He has provided moral support and good counsel on issues large and small and he does so with good cheer and great wit.

Chris Grene and Ellen Sontag: Chris is Jeff's social worker at school, and Ellen is Hart's social worker and case manager. Chris has gone to extraordinary lengths to learn about Jeff's complex and varied difficulties. She is in frequent communication with Jeff's private therapist, Sandra; the two have put their heads together over the course of five years to develop creative solutions for Jeff. Chris is a tireless advocate.

Ellen has a caseload of 15 or 16 emotionally-troubled students, so I am amazed that she can meet with me every single week for an entire hour and make me feel like Hart and I are the most important and beloved people in the world to her.

Man walking dog somewhere in Arizona: Jeff rushed to hug a small dog, after (as he is trained to do) he asked if he could pet the dog. The dog owner asked me if Jeff had any "special challenges?" Good catch. I do not recall the rest of our conversation or anything about the dog, but that man's kindness and tact are remembered and appreciated.

So long, Mr. K. There are plenty of other heroes in the lives of disabled children and their parents. Thankfully.

Summer Journal 2006

June 26, 2006
I went to camp. I went in a tent and had marshmallows. Next morning I went to bingo and got some prizes.

June 27, 2006
yesterday I was bored. Because my brother was not here. He is at camp. He will be there for two weeks.

June 28, 2006
Yesterday I did one model of a roadster. next I panted my other model silver. Then I saw a thunderstorm I was not afraid.

June 29, 2006
Yesterday I went to the movies. I saw Jack Black the movie. liked it because it was funny.

June 30, 2006
Yesterday I had a nap because I was bored. Then I had dinner. Next I went to see Shani Davis. He is a olympic skater.

July 5, 2006
I went to the fireworks and I had fun. next I went to a parade in Chicago. Last I had a party at my dad's house.

July 6, 2006
Yesterday I was bored at home. So I went to play with Hart. We traded cars. Then we had dinner. We had Mexican.

July 7, 2006
I did "fast forward" at school. I made chocolate pancake. My favorite thing is to go home from school in a taxi.

July 10, 2006
I went to a fair. I listened to music. I was walking with mom. I had a hot dog.

July 11, 2006
I like to sleep instead of going to school I like to play with Hart when I don't have school.

July 12, 2006
I went outside. I set my trucks out and Mom totally smashed my metal dump truck and I had to throw it away. Then I went to the movies.

July 13, 2006
Me and mom and Hart went to the schools. They were closed. So we went home. At home we played with cars.

July 14, 2006
today I saw a movie. It was about soldiers. the soldiers fight a space creature.

July 18, 2006
I had some ice cream at home. I went to the pool and I went to the slide and got wet. Then I went home and played with Hart.

July 20, 2006
I finished my model car. Next I looked the other way to not see Hart's helicopter when it was done. Next I had ice cream at home.

July 21, 2006
I had a blast at home when Hart gave me the truck. Next I went to speed skating. We got oreo chocolate ice cream.

July 24, 2006
the best thing this weekend was going to the pool. next I went in Hart's bed to play. I was playing with cars.

July 26, 2006
today is my last day in computers. I am glad to not got to computer tomorrow. I am going to watch a movie tomorrow.

Not Julian, Ted (photo)

Mean people s**k!

Scene: Aldi grocery store, Monday, 11:38 am

Two 60ish women inadvertently go in the "out" door and pause to read the weekly circular posted on the window, effectively blocking the exit with their shopping cart. I pause and lean on my cart, waiting for them to notice me and move. An older man remarks to me, "You are one patient lady," and rolls his cart around me and tells the women to "Get the hell out of the way." The first woman snaps to attention and quickly clears off. The second one hollers after the retreating man, "You don't need to be so rude." Without even turning around, he gives her the finger. She screams back, "You dirty old man!"

Frankly, when it comes to flipping the bird, I prefer not be the flippee, the flipper or, especially, a witness to three senior citizens flipping each other off.

I haven't seen this much unwarranted meanness since the Reagan administration. Anyone remember LBJ's War on Poverty? Ronald Reagan's war on Welfare Mothers? No matter what one's political affiliation, it is a simple matter of fact that a Republican administration engenders meanness. Something about the GOP platform encourages every-good-man-for-himself mentality. If you have the misfortune of being poorer or slower than the rest of the pack, it must be your own damn fault.

I play online backgammon for relaxation, only it was not very relaxing until I turned off the "chat" feature. The overall tenor of the whole game is competitive, of course, but nasty competitive. I found out very quickly that with the ability to chat, opponents swear, curse and accuse cheating if I win, but swear, curse and mock me if I lose. The world IS going to hell if anonymous players talk trash over BACKGAMMON!

It does not seem tantamount to social chaos to go in the wrong door at the grocery store, although possibly a bit foolish. Could that guy not have said, "Excuse me?" Could the ladies have apologized for creating the bottleneck? Apparently not.

If the Clinton era was a time of random kindness and senseless acts of beauty, now is a time of random rudeness and senseless acts of cruelty.

Losing my mind

Maybe I really am losing my sanity. It could be happening so subtly and gradually that I am not aware of it. It's a sad side effect of being single: there is no other adult around to provide a reality check. No one shouts at me to "get a grip" anymore, whether I need it or not. I am so preoccupied with being a good, sensible "therapeutic" parent, that my sense of self is possibly gently ebbing away.

Occasionally, I have episodes where I hear myself speaking and I realize how unhinged and hysterical I must appear, but I cannot stop. No amount of internal screaming to "get a grip" seems to help.

A few months ago at Jeff's school play, I watched almost the entire show with my eyes fixed on one of the other kids who was slowing and methodically shredding a silk scarf . . . . my silk scarf, in fact, intended as part of Jeff's costume. No amount to sensible self-talk could dampen the rising anxiety I felt. I had to leave the auditorium.

Then today, our local block party. Every summer on a nice Sunday, traffic barricades appear on either the block to the south or the block to the north. I never pay much attention. I am invited, I suppose, the same way all the third graders in one class are invited to Bobby's birthday party. Invited, but not welcomed.

My impression of the block party's purpose is that adults move their lawn chairs from the lawn into the middle of the street and kids ride their bikes maniacally down the middle of the road, instead of near the curb. The other entertainment is a visit from a local fire engine.

This morning, I noticed that our entire street was blocked off with saw horses, three blocks, including all the alleys and side streets. My house happens to be dead center and unlike previous years, there was no obvious egress either one block up or down. I simply moved one of the side street barricades to drive out. My misfortune was taking what I thought would be a less intrusive route back home three hours later.

Without realizing it, I had driven up to a circle of occupied lawn chairs placed dead center in the street. I offered to turn around and go another way. I asked if there was a route the angry mob preferred. I explained that I was a neighbor, too, and in fact a resident of this very block, but the damage was done. Short of turning back time and parking on a side street, there was nothing for it, but to bear the neighborly swearing and threats. Pretty harrowing.

Was it really distressing enough to cause me to cry? I have lived here seventeen years, and never had reason to exchange words with anyone. Without Jeff in the back seat, maybe it would not have been so humiliating. With another adult living here, maybe I wouldn't feel so vulnerable.

The neighbors know where I live, they know my car. I am a single woman living with two young children and I clearly need to get a grip. In the meantime, I'll have to leave my house only under cover of darkness.

Who knew?

H: (going through a stack of coupons in the mail) Lose weight now! Nope, garbage. You're perfect, Mom.

Uncle Arnie (photo)

July 2006

Mini Me (photo)

My brother with son Julian, New York Times Square Toys R Us, spring 2006

Get Your Kicks . . . (photo)

Jeff assembled an entire kit of the buildings on historic Route 66.

Rabbitting on

My suburban home is a wildlife refuge. Of course, there are the boys, feral animals that they are, but additionally every summer our yard teams with creatures. In addition to the raccoon in my bathtub, there have been a number of opossum who have fallen into the window wells to be rescued and set free by Animal Control. I see skunks gamboling on the lawn at dusk. Chipmunks scamper across the patio. Three baby raccoons were born in a nest in one of our chimneys, the chimney which did not have a cap at that time. Once, I saw a pair of coyotes . . . coyotes, in suburban Chicago . . . right on the front curb.

And always, lots and lots of rabbits. I do not garden so I don't think of them as pests. Now that our cat is gone, they are the closest things to pets that we have.

At the moment, we have a burrow at the back of our yard, under the hedge. From the kitchen window, I have a clear view of the family's daily lives. It appears that there is one large one and two smaller ones. It amuses me to imagine a parallel bunny family out there. Our largest annual rabbit visitor is always called One-Ton-Bun. So we think there is One-Ton-Bun and her two bunny boys. The two little ones often play together while their mom placidly eats.

To One-Ton-Bun, maybe we are a source of endless interest: the inhabitants of the human burrow at the back of her yard--a solitary big one and the two smaller ones. "See, children," she tells them. "They are looking at us. The humans are strange, but fascinating."

Heart of Glass

Although born twenty-five years too late, Hart is a punk rocker at heart. He especially adores the rock group Blondie. He worships Debbie Harry. We keep the "Best of Blondie" CD in the car, because it is Hart's favorite. He knows all the songs, and sings along.

Hart has asked me many times if I ever saw Blondie perform. (I did not.) He has also asked many times if he could see the band perform. I have explained that these songs were recorded twenty years ago. Debbie Harry probably doesn't look like her photo on the CDs anymore and she might be a grandmother even, and too old to tour. We have to content ourselves with her recordings.

This summer, when Ravinia Festival announced its season, what do you know? Blondie was the opening act. I immediately ordered tickets. I did not even tell Hart until I had the tickets in hand. It seemed too good to be true. So off we went.

Midway through the concert, I suggested we go close to the stage, so we could see Debbie Harry. We crowded close to the pavilion with the other members of the lawn seat proletariat. We danced. We took turns watching Debbie through our opera glasses. During the encore, Hart blew her kisses. He swears she saw him and blew kisses back. It was an extraordinary evening.

Under the groupie exterior that is Hart lurks a fragile soul. Hart's story is one of great loss: loss of his birth family, his country, his language, then his father (due to divorce) and recently, our geriatric cat. These cumulative losses have created a hole in him that cannot be sealed or filled. Hart constantly feels slighted. He worries that he will not have enough food or toys or money. No amount of love or friends or attention ever seems to be enough for him.

Our evening at Ravinia revealed a different boy. Hart was entirely in the moment. I anticipated complaints about the crowd, our seats, the noise, the bugs. Nothing. Hart even declined ice cream, for fear of missing any of the music. Is it possible that one evening replaced even a tiny bit of what is missing from his heart? I imagine the adult Hart saying, long after I am gone, "As a kid, I loved Blondie. It was my fondest wish to see Blondie in concert. One summer, they performed at Ravinia Festival. And, you know what? My mom took me!"

READ A REVIEW: Atomic Energy of Blondie Rages at Ravinia

Yahrzeit

About three years ago, I had an unusual dream. I dreamed that I came to visit my parents' house in Ohio and when my dad opened the door, I flung my arms around him and started crying. He immediately asked me sternly what I was crying about. "I haven't seen you in four years!" I sobbed. Three years ago, my dad had been dead for eighteen years.

Now my dad has been gone twenty-two years, most of my adult life. He wasn't at my wedding, or my brother's wedding or my youngest brother's Ph.d. graduation. He never met my husband, or Hart, Jeff or his newest grandchildren.

Hart and Jeff have two living grandfathers, Grandpa Al and my stepfather, Grandpa Bill. There is a shadowy additional presence, Grandpa Paul, on whom the boys appended the honorary last name, "He's dead." Whenever I mentioned him, I'd say, "My dad, your Grandpa Paul" and they would nod, "He's dead." But recently, there have been additional questions. "Were you sad when he died?" "Do you miss your dad?"

I always say, "Yes, I do," but the truth is so much more complicated than that. His real last name would have more appropriately been, "he-is-a-very-difficult-person." People who loved him and were his great friends said it. People who hated him must have said that and much worse. The rabbi who eulogized him said, "We frequently disagreed," which is remarkably generous considering fifteen years of head-to-head battle on all issues large and small; religious, managerial, philosophical, educational, financial.

My dad was a person of extremes: too loud, too opinionated, too impatient, too blunt, too combative. His screaming tirades were extreme in number and volume. In the same way, he was extreme in his principles and values and he would brook no less in anyone else. A morality bully.

I do miss him. He is one person that I would like to talk to about the boys. I believe that were he alive he would whip Hart and Jeff into line with one bark. While other friends and professionals generously inquire about my needs; my leisure, my hobbies, my indulgences, I suspect he would give some straightforward advice, whether I asked for it or not. My dad never put anything gently. Much as I hated hearing his intrusive opinions, time has born him out, he often turned out to be right.

This is him now (art)

Bix is grown up but you can feed him and visit him.

Cryptic References for $400, Alex

H: There are only two beetles left.
Me: Huh. Cars? Are you telling me about toy cars?
H: No. Beetles. There are only two.
Me: You mean bugs, insects?
H: NO! Two. Beetles. Left.
Me: Please use more words so I can understand you.
H: Beetles! The singers!
Me: Of course. That's right. Two Beatles still alive. Ringo and Paul. What made you think of that?

Hair Apparent

Gimme head with hair
Long, beautiful hair
Shining, gleaming,
Streaming, flaxen, waxen

__________ HAiR: The American Tribal Love-Rock Musical

Hair. A life-long preoccupation of mine. As a child, I craved long chestnut locks, later, long straight blond hair. No wait. Curly--curly and auburn, that's what I want. However, I have nondescript light brown hair which I have worn short most of my life. First, I had the 60s Pixie, and then the adult versions; with flippy bangs in the late 70s, mullet-y in the early 80s, then short and spiky, moving on to the 90s horizontal shelf in back and finally casually disheveled in the new millennium.

I also have what a friend termed "terrier hair"--hair so straight, thick and coarse that, if it were longer, could string violin bows. This texture provides my hair with its own force field. It repels foreign objects. No bobby pins, barrettes or doodads for me. I could feel the force of gravity on my Farrah Fawcett bangs, before the pssssssst sound of the curling iron died away. In my brief high school years with long hair, I once tried a ponytail. It was about the circumference of my wrist for a nano-second, and then, sproing, the rubber band broke under the strain and shot across the room.

Additionally, I got the whole genetic package: the Hobbit feet; the upper lip which cries for regular waxing, sugaring, bleaching; the eyebrows like two parted lovers, reaching to embrace across the bridge of my nose.

Now, in my 40s, I have the hair obsession under control with the help of my hairdresser and an array of commercial products. What I hadn't reckoned on was life with two adolescent boys.

"Look at my arms!" Jeff exclaims after swimming. "Wow," I agree. "Fur." I look closely at his face with what I hope appears to be a fond maternal gaze. I am scrutinizing him for signs of nascent uni-brow.

Hart gingerly fingers his upper lip. He is dismayed by the faint shadow there. "See, I have it, too. Everyone does." I console. "It looks much better on you."

Alas, it gets worse. A friend who shares my birth date confided, "I am really going gray." "Yeah, me, too," I said, thinking of my dozen silver strands that I occasionally notice when looking in the rear view mirror (IF I have the sun roof open). "No," she said, cocking an eyebrow meaningfully. "I am going gray EVERYWHERE."

Hart and his camp counselors (photo)

Hart's last day at camp, July 1, 2006