December 16, 2012
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
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
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
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
August 5, 2012
June 16, 2012
June 14, 2012
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 23, 2012
May 18, 2012
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.
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.
May 4, 2012
April 19, 2012
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
March 28, 2012
March 4, 2012
January 24, 2012
January 18, 2012
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.