June 30, 2008

Wag of the finger for Aunt Jodi

Aunt Jodi, what the hell were you thinking? Jodi is Kate Gosselin's sister-in-law. Kate is the "Kate" of Jon & Kate Plus 8. The Eight refers to her brood of a set of TWINS and a set of SEXTUPLETS. I am not a regular watcher of the show. For me, it's a bit like watching a train wreck in slow motion, but that may be the occasional appeal. The Gosselins have our family well out-numbered, but in terms of volume and mischief, Hart and Jeff could easily give that family a run for the money.

Watching the show, I am amazed and impressed by Kate's organization and her energy. Then I remind myself that she is nearly two decades younger than I am. She is also infuriating*, but she does have sextuplets, SEXTUPLETS, and I cut her some slack.

On a recent episode, Aunt Jodi had the three-year-old sextuplets at her house and she offered them bubble gum. Offered! Hey, kids, who wants to smoke? Anyone want a beer before naptime? Kate is very health-conscious, so it would not have been a great leap to guess her feelings on the issue of gum. When the kids got home, Kate was beside herself. She could not throw out five sets of clothes and all the toys ruined by gum. She did not relish a few hours scraping gum out either.

It made me think of all the trusted caregivers I have had over the years who have shown such utter lack of judgement that I have wanted to scream at them,"YOU ARE SUPPOSED TO HELP ME, NOT MAKE ADDITIONAL WORK AND AGGRAVATION!" I refer to the trusted ongoing sitters, not the one-time dilettantes who were never asked back or joined the Federal Witness Protection program after a few hours with Hart or Jeff. I carefully vet out anyone who will care for the boys and, unlike Kate, since 1996 I have never left more than one kid in the care of anyone. Still, things have occurred that have left me speechless with anger and incredulity.

While my mother was visiting, I made an appointment with the boys' therapist for a half-hour after the boys were in bed. When we returned, we could hear them screaming from blocks away. They had cranked open their bedroom window on the second floor, knocked out the screens and were poised on the window sill for flight. Later, I asked Mom if she had heard them. She had, "but the bedroom door was closed." Note to self: Fire mom.

Mother-in-law was not much better. I came to pick up Jeff, and since Grandpa had a tech question, I asked her if she would watch Hart, who was in the car. She did indeed watch Hart, as he released Jeff from inside the house and they both disappeared down the street. I should have been more specific. Note to self: Remind grandparents to both watch children AND intervene.

I came to long-time adult sitter's house to find her 14-year-old daughter caring for her younger brother, two toddler cousins, an infant and my kid. Note to self: Ratio of sitters to sittees equals 1:1.

Regular college-aged sitter agrees to take Hart shopping for toys with $30 he "found." Note to self: Remind adults that Hart is unemployed and has no legitimate income.

Arrive home to empty house. Front door is wide open. Sitter explains that she pulled up in driveway to collect her charge. Note to self: If 14-year-old boy had the sense to close the front door behind him, he would not need a babysitter.

Aunt Jodi, I'll give you the benefit of the doubt. It was, I hope, a momentary lapse. But for the sake of my own sanity, I had to turn the TV off.

*Kate has very rigid, traditional ideas about gender roles, which I find astonishing in someone her age. We went through a Barbie-Boy phase at his house. With eight small children, I would find other issues to occupy me, but then I don't have my own reality show.

Kate is anal-retentive. She is self-deprecating about this onscreen which is charming, but I get frustrated watching the show because she makes lots of extra work for herself because of it. For example, she has five little girls with long hair, which requires lots of time shampooing, de-tangling, brushing, styling, braiding and decorating. Why? See above about gender roles?

I know that some parents enjoy dressing their multiples alike occasionally,but the Gosselin kids are always dressed alike, which strikes me as very expensive (no hand-me-downs) and a logistical nightmare.

June 26, 2008

New Chapter

In our family lore, there are a number of historical tales about "before you came to us." The boys like these stories: they know the characters and the settings; me, their dad, our pet cat, this house, Chicago. There is just enough novelty to keep them interested. "You only remember the kitty when she was old and sick, but she was a frisky kitten once, before you came to us." "That's a picture of the Coliseum in Rome. Daddy and I were there together, before you came to us." Whenever we are in Wrigleyville, I point out our apartment. "That's where Daddy and I lived when we were first married, before you came to us."

Further back in the mists of time are another set of tales, those about "when I was a kid." These are much like scary stories told around a campfire, outrageous enough to be scintillating and just barely believable. These stories take place in the exotic setting of Ohio, not in Chicago. The first time I ever used that phrase was after a particularly difficult family event at our synagogue. Perhaps it was too noisy or chaotic for Hart and Jeff, but I had to remove them and they did not want to leave. All three of us finally were panting and crying on the sidewalk when I said, "Sometimes it is just too hard to stay and have fun even when you want to. I was a third grader once and I can remember what that feels like." There wasn't even a sniffle, just a sharp intake of air, as Hart shrieked, "You were not! Who were your mom and dad?!" Reminding him that he knows my mom, a.k.a. Granny, was fruitless. I had to present photographic evidence. I suppose it does stretch the bounds of credulity to explain that I have two younger brothers, they know these two people as grown men with receding hairlines, not as the little boys I describe.

It appears we have completed another chapter of our family history. The working title is either "when we all lived together" or "when Hart lived with us." Over the past three years I have been slowly coming to terms with the bleak reality that Hart will not ever be able to live independently. However, I was determined to make the best of his time at home despite the challenges. About two years ago, I started ambivalently doing research, filling out forms, contacting people and agencies to see what services and resources exist. As recently as this year, when I finished assembling all the forms, documents, medical history, evaluations for Department of Human Services funding, I still believed that there was no rush and if I had made it this far . . .

It must have been a combination of factors, the frequent police visits, the school incidents, the compelling reports of hospital staff, social workers and doctors that made me finally realize that keeping Hart at home was no favor, and in fact a question of safety and security for all three of us.

This week I drove Hart, two suitcases of clothes, all the bags and bundles of his toys that could fit into my Mini Cooper, and drove Hart to his new residential home and school in Wisconsin. He and Jeff had started the farewell party at 5am and were so worked up and out of control by 8am that I had no second thoughts about heading north fast.

In the month preceding the move, Hart had been alternately tearful and anxious, then eager and enthusiastic. Jeff did his part too, assuring Hart that he would sleep in Hart's bed and play with his stuff while he was gone.

Now I feel great. Fewer decisions about the boys have felt so right and appropriate. I have made many agonizing choices, often trying to select the "lesser of two evils." Not this time. As I waved to goodbye to Hart , I felt a weight lifted that I did not know I was carrying.

It is my hope that at some time in the future, I can say, "Remember when we all lived together? There was always fighting and mischief. It was loud, chaotic and unhappy." I want to look back and remember that the process was so difficult, but the outcome, an appropriate educational and living setting, was worthwhile.

June 21, 2008

Word Play

Mondegreen

There is actually a word for misheard lyrics. It comes from a 17th century ballad The Bonnie Earl O' Murray:

Ye Highlands and ye Lowlands,
Oh, where hae ye been?
They hae slain the Earl Amurray,
And laid him on the green

Sylvia Wright coined the word after hearing the last line as "Lady Mondegreen."

We had a Motown collection CD that I used to play in the car for the boys. I almost drove off the road when I heard Hart singing, "Keep Away!" for Heat Wave. Burning in my heart!

Aptonym

I only recently learned this word. I know the concept as Nomen est omen, "Your name is your fate," as in the veterinarian practice of Drs. Byrd, Fish and Katz. Working in a library for many years, I came to know both a Mrs. Reeder and a Ms. Reading, now sadly divorced and using her original, unremarkable name. There is also the famous winning poker player, John Moneymaker.

I used to collect aptonyms if I saw an interesting one in print, but I stopped when I found the Holy Grail; a name so perfect and appropriate that I realized I would never find another of its caliber. The name of the spokeswoman for the then-new Disneyland Taiwan, as quoted in the Chicago Tribune--and I am not making this up--was Winnie Pu.

Doubles

Yo Yo Ma and Boutros Boutros-Ghali are in a restaurant. Boutros Boutros-Ghali asks the waiter, "How's the Mahi Mahi?" "So so." "Then I better have the steak tartare."

Yo Yo Ma says, "I have to fly to Walla Walla for a concert, I will just have the baba ganoush."

English doesn't have many of these alliterative doubles. Ping pong, Beri Beri? But Hebrew has lots. It has been a long time since my Hebrew-speaking days, but I used to delight in working them into casual conversation. It would have been a challenge to get all the ones I know into a single exchange though.

pilpel=pepper
dikdook=grammar
shilshool=diarrhea
koom koom=kettle
sof sof=finally
reesh roosh=the sound of water

June 18, 2008

Flash of insight

This morning, when Hart was up at 5am and rampaging around the house, I asked what he did at the hospital when that happened.

"They told me to go back in my room."

I asked why he could not do that when he is home.

"They had adequate staff there."

I guess that about sums it all up.

June 11, 2008

Good Night

I have sleep apnea. At least, I think I do. Every few months, without warning, I'll jolt into consciousness, gasping and gulping for air like some strange undersea creature washed ashore from Dreamland. The third time it happened I realized, in my bleary and confused state, that this was possibly "something wrong."

Sensible humans would have hied themselves to a doctor for consultation, but unless my ailments are unsightly or of a digestive nature, I don't bother. Instead, I mentioned it casually to my friend M. M is an EMT, a Red Cross instructor and he is certified for civil disasters. Should there be an earthquake, plane crash, or bloody nose, M is the go-to guy. I asked slyly, "Can someone die of sleep apnea? Like, if they don't actually wake up to breathe?" "People certainly do," M told me emphatically.

But it seems so unlikely. For years, I have been jolted awake, wheezing and gasping, but clearly alive. Yet at any time, I could be jolted into the hereafter. "Well, that was a weird dream," I imagine myself announcing on my arrival. "Someone was holding my head under water. Hey, what the--!?"

Sleep is so intimate, so individual. One can safely assume that most humans have sex in the same way: But no two people have the same dreams. Not since summer camp (with its communal showers) has anyone ever seen me sleeping. I can only suspect that it isn't pretty. Once I fell asleep on a train in Israel and I awoke to find an entire Israeli Defense Force platoon competitively throwing spitballs into my mouth. I have since learned a trick from Jeff, who sleeps cocoon-like, with a sheet covering himself entirely. Jeff takes the phrase "sleep tight" literally.

So I do not relish the thought of a night at the hospital, hooked up with electrodes, slobbering and thrashing around for any curious medical resident to watch on closed circuit TV. But I don't relish waking up DEAD either, so I may need a second opinion.

June 3, 2008

My Greatest Influence

“Oh, good, he’s asleep. All I have to do is relax and watch TV,” I thought to myself as Hart’s mother went to pick up his twin. Suddenly, a little boy came trampling down the stairs at full speed. We hadn’t been formally introduced and, at ten, I wasn’t sure what to do. “Does he understand English? Is he going to start crying?” the thoughts raced through my head, while this little six-year-old boy just stood there in his Spiderman t-shirt observing me like I was an alien.

“Your mom just went out to pick up your brother, but she will be home soon. Do you want to play a game?” The little boy turned and ran frantically back up the stairs. This was the beginning of my relationship with the boys across the street. The first time their mom told me they were “special” I assumed she was just bragging about her children. It wasn’t until years later that I truly understood the full meaning of that phrase.

People assume that for a person to influence you, they must be older and wiser. In this case, they are neither, Hart and Jeff are not older, wiser, nor one person, yet they have been the greatest influence on my life. Through them I have learned compassion, patience and how to help others. Since the beginning, the boys have encountered problems many of us will never face. Being adopted from Russia at the age of two and later being diagnosed with fetal alcohol syndrome, they have opened up a world I would otherwise never have known. They have taught me never to judge and to accept people for who they are.

The twins have always been in special schools. Learning new tasks takes the boys longer because they lack concentration and need repetition. Because of these disabilities, it was necessary for me to develop patience. Like “normal” children, the boys manage to get into mischief, be it fighting with each other in the backseat or breaking their toys, but unlike normal children the boys cannot stop themselves without intervention.

Hart and Jeff have a hard time listening. When I get frustrated with them and lose my temper, they don’t understand why. Because it is a key element in sustaining peace, I have gained a considerable amount of patience. Jeff’s favorite game is pretending he is a bus driver. He gives each child that comes on his bus candy and a new toy. Yes, this is in his imagination, but the generosity is genuine. His ambition is to build houses for children who are homeless. The boys care for all those around them and appreciate what they have. As their father said at their Bar Mitzvah, “the boys want to help others because they have seen how much help was given to them.” From their example, I have learned that compassion can bring happiness not only to others but to you as well.

Every year the boys go to a special camp for a week. After learning about this camp, I volunteered to be a counselor. Unable to get into the children’s camp, I worked the week for mentally handicapped adults. My campers were two young women with Down syndrome; my assignment was to be their caregiver and constant companion at swimming, dancing, eating and having fun together. It was difficult at first, but by the end of the camp, I was glad I had volunteered. Being there made our campers feel like normal people; no one stared or made rude comments. The barriers between special and normal disintegrated as the week went on until we all viewed each other as friends.
Through my introduction into Hart and Jeff’s world, I have grown as a human being and have learned the fulfillment of helping others and the rewards of giving of my time and of myself.

This past January I accompanied the boys to the Special Olympics. As I watched one compete in figure skating and the other in speed skating, I realized not only how proud I was of them, but also that this journey we took together has allowed all of us to grow. As Hart was putting on his Dracula cape for his solo, he turned to me and said, “Tahra, I’m glad you came with us”. That’s a long way from running up the stairs in fear.

______________ Tahra E., our neighbor and longtime caregiver, wrote this essay for her college application. Reprinted with Tahra's generous permission.


June 1, 2008

In order to quell recent comments that perhaps I have only one child as very few people have ever seen Hart and Jeff together, I offer proof.