December 16, 2012

Caution: parental shrugging

Hart was already snickering. We had arrived at Mom's and within a half hour I had already said, "Please don't shrug," for the fifth time. Ever the therapeutic parent, I had started to elaborate by saying, "Please don't shrug when I speak to you. If you don't know the answer, say 'I don't know,' if you don't care, say 'I don't have a preference.'"

Why does this annoy me so? My mother has always been non-forthcoming and inscrutable but in the past few years her go-to gesture is The Shrug. She raises her eyebrows and shoulders, lifts both hands until they are parallel with the ceiling and stares, as my brother is fond of saying, into the middle distance. As far as I can tell, this gesture has a myriad of meanings: I don't know, I don't care, I don't want to talk about it, this doesn't interest me, let's change the subject, I can't be bothered to talk to you, I am done with you, I have no idea what is going on. But it reads as the ultimate in disrespect like the teenage eye roll, or a smart-ass "talk to the hand." I hate it.

I had purchased two airline tickets at the most expensive and most annoying time of year to travel--Thanksgiving. I did this to spend both the holiday and my mom's birthday with her in California. Since she doesn't travel anymore, our twice-yearly get-togethers have been halved and the onus is on me to go there. So I sat for a few hours on the 405 in freeway traffic, going less than 10 miles an hour the entire way. 

Thanksgiving weekend is the first anniversary of my brother's death and my first visit to mom's house since my step-father died. So in theory, at least, we have some things to talk about.

But it was not to be. Are you hungry? Shrug. What time are we expected for Thanksgiving dinner? Shrug. How is the new cell phone working for you? Shrug.

I know I cannot change this behavior, much less extinguish it, but I can't help feeling that I deserve better. No matter how thick-skinned I am, it is a rebuff.

November 16, 2012

To stim, or not to stim?

It is a bit of family lore than one can always tell Hart and Jeff apart in photos: Jeff is the one holding a toy car. In his pre-school years, he had a brief flirtation with sticks, then Post-It notes, but the object of his attention for the past fifteen years has been cars. For those of you who have seen videos of Jeff speed skating, empty-handed, let me assure you that the cars are under my watchful eye in the bleachers. At competitions, other skaters play with iPads or GameBoys between races, but Jeff stims on his cars. At Jeff's junior prom, he posed for a photo underneath the requisite trellis, smiling broadly with his date . . . a handled shopping bag full of toy cars. (Note to professional photographer: Never thought to ask him to set the bag down for a moment, huh?)

At best, I am ambivalent about the cars. Mostly, I hate them. I hate how they have become a glaring public signal that my son, an adult, is disabled. Unlike a limp or a speech impediment, the cars are always on view. I hate the way they isolate Jeff. I see the hypnotic glaze that comes over him while he is hyper-focused on a car. He derives pleasure from the "stim," that no one can ever understand or provide to him. I hate that they are an addiction, forcing Jeff into petty scams and larceny. I hate that everyone around him enables him because "he just loves cars."

I can't hate the cars categorically. Their power over Jeff is so strong that he learned classroom behavior in second grade by getting Hot Wheels as a reinforcer for appropriate behavior. Although I jokingly say, "Don't trick me into talking about cars," the cars act as a social ice breaker for Jeff. Boys come up to him to talk. Adult men are interested in chatting about his scale-models. In Dublin, an Italian man who spoke no English, was able to admire Jeff's Ferrari by saying "Vroom, vroom." It was the universal language. Jeff is known to the local adult classic car collectors: he admires the car to the proud owner, then says, "I have that one!" pulling a miniature model out of his magic bag of cars. Many members of the Monday Night Car Shows have a diminutive reproduction of their make and model sitting on the dashboard of the real car, which Jeff has sold them or proffered as a gift.

However, Jeff is out of school now. He is not in the cossetted cocoon of Cove School, where everyone knew his passion and enforced some workable boundaries. Cars had to stay in the locker. Cars were surrendered to the teacher for the duration of the class. No car trading. No cars in the elementary school wing, only in the high school recess area. Now Jeff is out and about in the community, doing work internships, using public transportation. "I worry about the cars on the train," I have told him. "You aren't paying attention to anything else and I don't want someone on the train to hurt you or rob you." Jeff's dad has put the kibosh on walking down the street while carrying a car. Like walking and texting at the same time, walking and stimming is surely as dangerous.

Like an alcoholic, Jeff frequently swears off the juice, but the self-deprivation has proved impossible. I finally engaged a therapist to assist him with some strategies for the obsession and the inappropriate behavior it causes. Here is hoping! We adults, well, many of us, have all realized that a power struggle is futile but if Jeff wants this monkey off his back, we would like to help.


October 31, 2012

What did you say?

I know passive-aggressive behavior when I experience it. We have all worked with someone who quietly undermines us, while having a ready alibi for doing so. We know people who do a task so badly they are never asked to it again. My recent favorite was a dinner invitee who insisted on bringing something. When pressed, I suggested something, a side dish, a vegetable? Of course, it is a sure bet that said invitee arrived bearing anything-but-that. There is a particular poison to this behavior because it is elusive as smoke. Me, I come from a family of aggressive-aggressives so I am always surprised. No one would contradict someone in this sly way. We were loud and confrontational. I don't recommend that approach either, but, at least, you always knew where you stood.

Now my friend M and I have coined a term for another odd, slightly-less-toxic behavior. We named it aggressive-passive. Writ large, I have seen it played out often on JUDGE JUDY. For example, on the show, a friend phones and begs for money and when asked to pay it back, the friend claims it was a gift or an offer, not a loan. No one has ever asked me for money, but I have had the experience of being given a directive and either refusing or not responding, only to have the order forgotten or laughed off. It makes me feel wrong-footed.

When the request is outlandish, it is easy to assume it is a joke and it will go away. "Take me with you to Europe. You pay." "Help me move this Sunday." However, for smaller demands, I am unsure. Maybe it is just thrown into conversation to see if anyone picks up the gauntlet. "Take me to dinner." "Meet me now." That's the passive part, I think. Either response, "are you kidding me?" or "ok, let's do it" is acceptable.

So aggressive-passive is not the poison that passive-aggressive behavior is, but still . . . . STOP IT, PLEASE or Stop it, please?

October 8, 2012

September 30, 2012

End of Summer

I inquired after a friend's daughter who just went off to university for her freshman year. After a brief rundown, he paused, "Is it uncomfortable for you to talk about kids in college?" Both the question and the solicitousness took me by surprise. No, it is not comfortable for me. It is true that my kids will never go to college, but it is not like the thought just occurred to me. I have been on an alternative parenting path so long that I can't even see the well-trod road anymore.

Of course, friends and acquaintances have inquired about Hart and Jeff, since both finished 12th grade in June. Jeff started at Evanston Transition House, a post-high school program through our school district for Evanston special needs students. He likes it a lot, and seems to be pretty self-sufficient these days. Each student has his or her own schedule and own self-determined goals. The day consists of some instruction and supervision in independent living skills and some work experience. Jeff just started work at Jet's Pizza and Northwestern University's food service, but hasn't said much about his duties. I suspect he assumes it is none of my business!

Hart moved in August to a group home in suburban Waukegan. He goes back to the Lake Villa campus via van for school and work. He loves his job in the greenhouse. The move has completely transformed Hart. No more outbursts or crazy behavior. He has been very motivated to live up to expectations and earn privileges, such as unaccompanied time in the community. It is hard to reach him on the phone, since he is often out of the house in the evening: at the Y, shopping, or on a recreational outing. I am purchasing a cell phone for him.

I have done more than my share of complaining over the years. I won't ever have a dean's list student or a university student of any kind, but I am proud of the boys' accomplishments. Sheesh, I am proud of my own.

August 20, 2012

August 7, 2012

Post-camp report

Also I found some Israeli girlfriends. Most of them are cute, like all of them.

_____________ Jeff

August 5, 2012

Guatemala, July 2012




Click the slideshow to see the photos in a larger format.

June 16, 2012

June 14, 2012

Another New Chapter

It has been a tough year all around. The loss of my brother Arnie has had an effect on Hart, Jeff and me that continues to pervade our lives. "Do you think about him a little?" Hart recently asked me. "I think about him a lot. He was my brother for forty-two years." So now I am the oldest sibling, of two, not three. That was the prelude to a bumpy senior year.


Too bad the IEP process doesn't call for a transition plan for parents, as it does for special needs students. That got a bit of a laugh at a breakfast I hosted with another parent of a Cove senior for our kids' teachers and "specials." But I was really serious. Jeff has been at Cove School for eleven years, since second grade. So I have been at Cove School for that duration, too. The parents and teachers have been my community, my safe haven, for a very long time. Jeff was apprehensive about finishing his senior year. Occasionally, he was tearful: "What am I going to do without Cove?" Although I would tell him about the next step planned for him--participation in our school district's Transition House program, which combines independent living skills with job training--I was secretly thinking, "What am I going to do without Cove?!"

Hart, too, has a big move coming up. Although he will stay at the same facility, he is shortly to move off-campus into a young adult group home. The pre-transition is taking place slowly, thankfully, with day visits to get used to the peers and staff there.

The upshot is that the boys' academic careers are over. I wish this was not so because Hart's school career has been so disjointed and spotty. Now that he is in a comfortable place, perhaps he could have made more progress, but now it is too late. Jeff became a devoted student at long last, in high school. He worked hard on math, and suddenly, last year, became an avid reader. Again, it occurred to me to wish that he had a bit more time for academics, but now he must focus on independent living skills.

My peers are seeing their 12th graders off to college this fall, but I will start a new job, too. After years of advocating for school services, now I must chase down available resources for developmentally disabled adults. A new challenge.

May 18, 2012

A Bar Mitzvah, With Autism

The New York Times
Friday, May 18, 2012
By JOEL YANOFSKY

It should be interesting.

At least, that’s what I’ve been telling guests in advance of my son Jonah’s impending bar mitzvah. Sometimes, I wish we’d added this phrase — part disclaimer, part promo — to the invitations that went out a couple of months ago.

Anyone who’s organized a bar or bat mitzvah, a communion, a sweet 16, even a relatively big birthday party knows how much there is to prepare. But when your child has autism, as Jonah does, the preparations never seem to end; nor does the worrying about everything that might go wrong. So, yes, it’s even money that on the day of his bar mitzvah Jonah will do something interesting. I’m betting that just as the rabbi is briefing him on the significance of this time-honored ritual, Jonah will give a shout-out to his favorite animals, yaks and zebras.

That’s Jonah’s move. He’s a sweet, lovable child who, quite regularly, says or does something we can’t explain to other people — something that will invariably seem kind of weird.

But then everyone around here is acting a little weird lately. Jonah’s Hebrew tutor, for instance, is concerned about his dropping the Torah, thus dooming us all to an Indiana Jones-style curse. My wife, Cynthia, has concluded that there are too many guests and too few tables. “Someone’s sitting on the floor,” she keeps muttering. As for me, I fall asleep humming the tune to “Que Sera Sera.”

Whatever will be, will be. Our new family motto. It marks a dramatic change from how our son has been raised for the last decade. Jonah was diagnosed with autism when he was almost 4, and ever since we’ve not only been preoccupied with anticipating every behavior he has but have been analyzing why he has them: a parenting style that has effectively prevented me from thinking too far ahead. The future is a scary place for every parent, but it’s especially so for the parent of a child with autism. No one has ever been able to tell Cynthia or me with any degree of certainty what our son is capable of.

What I’m capable of is another story. Tradition holds that I make a speech after Jonah is done. I’m supposed to expound on what kind of adult I hope he’s going to become. “Today, you are a man.” That sort of thing.

But I still can’t imagine what my son’s adulthood is going to look like, even if I get glimpses of it every day. Now, as he waits for the school bus in the morning, he shoos me away. Evidently, I embarrass him and it’s high time, too. There is, also, above his lip, visible only to his mother and me, the ghost of a future mustache.

Once he’s off to school, I return to my speech-writing, though all I have to show for my efforts so far are false starts. Like, “I should probably explain why Jonah was talking about zebras before.”
I’m also tempted to explain what the last 10 years has required of Jonah and Cynthia and me — how we got to this point. When you have a child with autism you soon learn that you have to teach him everything, especially things most kids pick up intuitively — from playing with toys to carrying on a simple conversation.

Then again, I can’t leave out how much Jonah has taught me and keeps teaching me. Like how to accept him for who he is. For the growing boy who delights in the moment; the brand new teenager who’s remarkably immune to embarrassment; the young man who will always be, let’s face it, interesting. Come to think of it, not bad qualities to carry into adulthood. Worrying about what others think, about everything that might go wrong — as Jonah also keeps reminding me, by his example — is not worth the worry. Wrong is simply the wrong word.

In fact, I’d be wise to begin my speech by thanking my son for making me grow up a little. How’s this for an opening line? “Today, I am a man.”

Joel Yanofsky is a writer in Montreal, Canada. His latest book is Bad Animals: A Father’s Accidental Education in Autism.

In the Garden of Beasts, Eric Larsen

I just finished reading an interesting book "In the Garden of Beasts" -- about events in Germany in the 1930s, as seen through the eyes of the American ambassador.
My family must have been very worried about the political situation, but nothing was ever said while we kids were around, so I guess you can say we had a normal childhood. My dad must have thought, like so many others, 'Hey, I was awarded the Iron Cross for my service during World War One, they wouldn't do anything to me, would they?' It wasn't till he was forced to close his medical practice that the decision was made to get out of Germany.


________________ Erica Stux

May 4, 2012

S**t Jeff says

"I am ready to eat now. I just needed some brother-time."

______________ Jeff

S**t Jeff says

"I have more brain power now that I shaved. All that fur was disrupting my concentration."

______________ Jeff

April 19, 2012

Holocaust Memorial Day 2012, Yom HaShoah

I am reading a book titled Kristallnacht by Martin Gilbert, about events in Germany leading up to the Holocaust. Reading it makes me thankful that my parents had the initiative to get in a timely manner all the documents needed to emigrate. The book also made me remember my personal recollection of the day known as Kristallnacht, Nov. 8, 1938.

____________________________________Erica Stux



Daddy (that is Max) was among the Jewish men rounded up and shipped to Dachau even before Kristallnacht.

On that particular day I and a few schoolmates took the taxi that always brought us to school. On the way, we were astonished to see store fronts smashed and mechandise such as yard goods and clothing thrown helter-skelter onto the sidewalk. Arriving at school, we were told "No school today, go back home." Of course we kids had no understanding of the significance of what had happened.

Daddy was away for six weeks. The story we were later told was that someone told the authorities that Daddy's patients needed medical attention, they need him in his office. But this doesn't make sense - all Jewish medical and law offices were officially closed as of Sept. 30, 1938. Most likely, Daddy's patient Mr. Klieforth, the American consul in Cologne, interceded. So Daddy was let go and came home. He never talked about his time in Dachau. But he then redoubled efforts to get all the documents needed to emigrate.

The previous July '38 when we applied at the American consulate in Stuttgart for visas to settle in the U.S., Mr. Klieforth had written to his colleague there a recommendation to expedite matters for us. We received our visas on Dec. 15, 1938. We had previously gotten permission to be in England, but had to promise our stay would be temporary, only until our number came up to enter the U.S. Before leaving Germany, we had to turn over 20% of the family's assets, plus some other payments. We left for England in January '39.

Our furniture was packed up and put in storage until we should need it. Maternal grandparents remained living in our house in Cologne, but later they were forced to move into a small apartment. Grandpa died of natural causes in '42 or '43. Grandma was deported to Theresienstadt (we found out after the war), and died there.

April 1, 2012

Vroom

I can't believe it is almost time to leave. The toy Ferrari Jeff acquired in London has had some amazing adventures, all over Dublin. Jeff has made lots of friends with it, including an Italian guy who didn't speak English, except for "Ferrari . . . . Vroom."

March 28, 2012

On the Liffey

The jury is still out on how successful this new iteration of "Travels with Jeff" is. After several lovely days in London with Martha and her family, we are here in Dublin without knowing any of the locals. This means I must rely on maps, guidebooks, and, hallelujah, my iPad, for ideas and directions. It's a greater challenge than relying on a native.

Jeff's initial experience with a traditional Irish breakfast this morning did not go down well, and he spent the morning in bed. I hied myself over to the Chester Beatty Library to see the collection of rare manuscripts. It was terrific but probably not of interest to Jeff. When Jeff felt better, we walked over to see a more interactive museum about the Viking and Medieval history of Dublin, and its next-door neighbor, Christ Church Cathedral. We were befriended at the church by a group of senior citizens on a day trip of Dublin.

One thing has not changed, ever. All photos of Jeff show him holding a toy car. The car of spring trip 2012 is a large Ferrari he acquired through intense negotiations with Martha a few days ago.

March 4, 2012

Senioritis

I have been thinking about senior year. Jeff and Hart are not done with their education, but this is Jeff's last year Cove School. He has been quite conflicted about it. Sometimes, he has parroted the other seniors who profess to be glad to be getting out, at other times he has been wistful, saying, "What will I do after Cove?" I feel the same way. Jeff has been at Cove School eleven years, longer than any other student there. So, in essence, I have been there eleven years. This is has been my community, too, my safe haven among other special needs parents and caring teachers who love my son and are committed to his well-being.

Last night I attend the annual Cove School benefit. My last one as a Cove parent. It was lovely, and I know many people there. Of course, I am a veteran of many of these, eleven of them. Fun, but bittersweet.

But, lest I get complacent about the future trajectory for Jeff, here I am, as I write, sitting in the emergency room of the hospital. Things had been going very well for Jeff overall, although he started developing some worrisome tics a few months ago. His doctor suggested taking him off of one medication. He did fairly well, although the doctor warned us that he might be irritable, which he was! Then last week, he started having paranoid delusions, which has NEVER happened. I was summoned to collect him from school. Then a visit to the neurologist and he was back on track. However, tonight after getting home from dad's, Jeff sent some troubling emails to his teacher, and got aggressive and upset when asked about it. After I gave him a chance to cool down, I found him hiding in a closet and he refused to come out.

Off to the hospital. Turns out he is okay now, and did not have to stay overnight. Note to self: I do not have the luxury of complacency. Maybe Jeff and I can both do volunteer work for Cove in perpetuity.

January 18, 2012

Arnie II

A few years ago, I had a re-occurring dream that I lost one of the boys in a crowded place and was frantically searching for him. I would wake up exhausted, then relieved, realizing it was only a bad dream. For the past month, I have had a similar experience, only that every morning when I awake, I realize it has not been a bad dream. It just feels that way. My brother has really died.

In the first few days, I was on auto-pilot, checking off related tasks on my daily to-do list. My brother Ted and I had the unenviable task of calling family members, then trying to identify Arnie's friends and co-workers and notify them. Telling Hart and Jeff was one of the hardest parenting tasks I have had to do.

It was a great comfort that friends here rallied around me. As people heard the news, they expressed their condolences or went out of their way when they saw me to speak to me. My Weight Watchers group sent a card signed by the whole gang.

Now things have quieted down. I have sent thank-you notes and Ted is working on the logistics of Arnie's estate. I have returned from a visit to my mother in California. I have resumed eating. The news isn't really news anymore.

People still solicitously ask how I am doing. Not so well, thank you. The mourning period is brief, but the loss is permanent. I am still walking around in a vivid nightmare. But thank you for asking.

January 5, 2012

December 2011 (photos)

Performing at the Old Town School

New Year's out east with Julian and Chloe