Ye Olde Condundrum

Now that Hart and Jeff are older (almost 21!), it has been a while since I have been in a group of special ed parents whose children are in elementary school. I am off on new adventures, such as shepherding SSI and Medicaid applications through the labyrinth of official government vetting.

Last weekend, Jeff and I attended a community camp-out through our synagogue. I love this event, although I haven’t attended in several years. One of the great things is that it attracts a cross-section of membership, from families with toddlers to teens, to a few older people without children. As ever, there are lots of adopted kids and an overlap of parents with children with special needs. I must be the grande dame of that demographic.

I found myself in a cluster of four mothers, two of us encouraging the other two to get wills and estate planning done. “You don’t want the state to determine what happens to your child, if some tragedy befell you!”

But I had the sinking feeling of deja vu when one parent said she had taken her daughter to the neurologist Jeff goes to, hadn’t liked what he had to say and left. I asked, “Who prescribes medication for your daughter?” I regretted this the minute I said it, because I saw the familiar squirm that I used to encounter so often. “Oh, we aren’t ready for that, yet.”

I have a lot to say about medication for disabled children and since I don’t want to be shrill, I am venting in writing. To these parents, I wish I could say,

Look, we have all been there. We are educated, intelligent, middle-class women. We are used to working, studying, solving problems and when it comes to child-rearing, we think if we just exert the effort, put in the time, we can work this out.

Special needs kids are wild cards. No amount of hubris or just plain effort is enough. Anecdotally, I know of many, many parents who finally, out of options, tried medication for their child, only to exclaim, “We should have done this years ago!” I know of no one who has ever said, “This was a huge mistake.” No one.

Maybe I am being harsh. After all, my children’s needs were so severe and so obvious that it was evident at age three . . . . they needed medication. In fact, often thereafter, a new doctor would say off-handedly to me, “Ever consider medication?” To which I would laugh uproariously, and say, “He IS on medication!”

It seems even more warranted in children whose needs are slightly less severe than my kids’ and who are trying desperately to keep up in a regular classroom. That seems to me particularly unfair. For a child with ADHD or a debilitating anxiety disorder, the playing field will always be tilted against them.

When it comes to medication for special needs children, it seems we parents all eventually have that "come-to-Jesus" moment.

I had breakfast with a friend yesterday, a mother of a classmate of Jeff’s. We agree on this: the choices we make for our special needs kids are usually more about us than about the kids. I am not sure what that says about my parenting. If it means that I am lazy and looking for a quick fix, so be it. But after 18 years with Hart and Jeff, if there is any fix, I not found it, and I sure have looked.

Dental-schmental

I need some quality-, alone-time with my gums.

_________________________ Hart, post-orthodonist visit

So long ago . . .

Phil Berkson did this portrait of me when I was the computer go-to gal at the Museum of Contemporary Art. I really rocked that IBM AT and I was a master at un-jamming the pin-feed printer. Did I look like this almost thirty years ago?

Jeff wears shorts

Wolf legs!

____________________ Jeff

My mother forgot to tell me not to talk to strangers

I am almost compulsively friendly, an enthusiastic talker-to-strangers. It wasn't always so. My friend M and I have a running a joke about about asking a man a harmless question like, "When is the train expected?," or "Do you have to feed the meter today?," only to be met with an uncomfortable mumble, "Um, I am waiting for my girlfriend." I used to think this was code for  "Are you hitting on me? You aren't attractive enough to speak to me. Go away," but now I give myself the benefit of the doubt; I assume it means, "Just go away." So much for asking strangers innocuous questions!

But since I have had the boys, I have become utterly shameless about talking to strangers. I ask other shoppers for their opinions, I discuss produce with passers-by at the grocery store, I offer suggestions to hapless shoe shoppers, I flirt with toddlers and their parents. I began this behavior, I think, to model pro-social interactions for the boys, thanking servers and cashiers, asking librarians and retail staff for help. 

Truth be told, there are darker reasons. Middle-aged women become background and fade into invisibility. To wit, no one has told me of their girlfriend's imminent return lately. And even sadder, for twelve years, when 98% of my interactions were with Hart or Jeff or their teachers, I was just lonely, and longed to talk to a normal human being, without the onerous backstory of parenting two disabled children. There, I have admitted it. 

Now it has become some bizarre habit. I am not affronted if people don't engage. A one-word answer or lack of eye contact is hint enough. 

Recently, I had an experience that made me question whether I have become intrusive or annoying, or both. An old friend and I met for coffee, settling ourselves into a circle of armchairs at Starbucks. Another man was already occupying one of the chairs and working on his computer. Periodically, he looked up and smiled at us, as we caught up on a decade's worth of news. At one point, an older gentleman came over to greet this guy, and I noted that computer-man responded in Israeli-accented English. 

As we were getting up to leave, I said, in Hebrew, "I see you are an Israeli. I was just there this summer." (I have done this before. Usually if you tell someone you have been to their home country, they ask how you liked it and what you did. In the case of meeting Danish people, they always laugh because the one sentence I can say perfectly in Danish is, "I don't speak any Danish.") To my astonishment, this guy leaned forward and said, clearly, in English, "Why do you tell me this? I do not care at all that you have been to Israel." My friend was at once, embarrassed and horrified. I backed up a few feet. "OK, excuse me." It was not enough. "I DO NOT CARE AT ALL. WHY TALK TO ME?" I put up my hands and made a hasty exit. 

Uncalled for, right? But I imagine this guy going home to tell his friends and family, "I was drinking coffee, working on my computer, minding my own business, when some crazy American woman starts speaking to me in Hebrew. What is that about?" 

Maybe I should think about dialing it back. Hart and Jeff are unlikely ever to be appropriately social. My job as an example is over. Now I am just stuck with a bad habit.

We are just features in an algorithm!

Photo fatigue

My friend Mark once explained to me that while he loved cats, he is not interested in seeing photos of his friend's cats. (I myself am generally up for any cat-viewing on offer.)

Last week, I had the realization that I don't care for viewing photos of strangers' children and grandchildren. I have a dear friend who whips out her phone photo album every time we get together . . . . I don't know those people, much less their descendents!

Now I realize that I have been in the habit of sharing photos of our part-time cat, Inky. In other words, I bore my friends with pictures of a stranger's cat. To everyone, I can only say "mea culpa."

Uncle Philip and Aunt Diana (photo)

My step-brother Philip and wife, Diana

Arlo Guthrie (photo)

Alas, this is slightly blurry, but Meiya and I did ask Arlo if we could take a photo with him. Hart took the picture but he was mortified that we were such dorks.

Two ears x two boys = four surgeries (photos)

Chloe and Julian visit (photo)

JRC Simchat Torah Oct 2013 (photo)

Par-tay!

My brain is on fiesta-mode.

______________ Jeff

Where am I?

I wasn't lost. I just didn't know where I was going.

___________________ Jeff

Diagnosis Redux

I have long ago given up on the ceaseless quest for an accurate diagnosis for the boys. I mean, I can see the individual stars, I just don't have a name for the constellation. Like many other parents of special needs kids, I have opted to become an "opportunistic diagnostician." In other words, if a program or service requires a specific diagnosis, that's what we have!

I didn't use the term "autism" much, because no doctor or educator ever called either Jeff or Hart by that term. In fact, I studiously avoided the word for many years, for fear that Jeff would be removed from The Cove School. Cove is licensed to accept only learning disabled students. So "learning disabled," it iwas!

Lately, I have been more free with the term, although it is inexact. "Regulatory disorder" sounds so prim and clinical. Also, I use "autistic" to relay to the general public, "Appropriate social behavior cannot be assumed." That seems to work well enough.

Recently, our pediatrician, who specializes in genetic disorders, recommended having a new blood test done. The microarray shows genetic deletions which are linked to autism. I wasn't sold on the idea.* However, as the insurance pre-approval wended its way through our insurance company, I grew more and more excited about the test. "Maybe we can find out some information about your birthparents," I told Jeff. "Why not have Hart tested, too?" I asked the doctor. After the blood draw, a few weeks went by while I waited for the results.

But suddenly, I had an epiphany. Why would I expect the test to show anything? I realized years ago, intuitively if not by concrete evidence, that Hart's and Jeff's issues are caused by environmental factors. Still, hope springs eternal. 

Then the doctor phoned me to discuss of Jeff's blood test. The results revealed . . . nothing. There are no genetic abnormalities that are predictors for autism. 


* You know it is trouble when a doctor says, "The test is very expensive."

New York Times quotation, another adoption gone awry

Experts warn that adopting siblings, particularly toddlers, can take a considerable toll. “With two children coming home at 2 or 3, it is likely that one or both will have behavioral issues,” said Dr. Lisa Albers Prock, the director of the adoption program at Boston Children’s Hospital. “I tell parents to proceed with caution.”

Hart takes the A-Train (photo)

Post-camp letter to program director

I have been meaning to write to you . . . I cannot get over the change in Jeff, since he arrived home. He is so much more articulate and mature. He has voluntarily taken over additional chores, without even being asked.

He has taken a lot of initiative in starting conversations, or participating in ones going one around him. 

This evening I took him to an adult "live lit" event, sort of storytelling for adults. He went up to compliment the storyteller whose story his liked the best, then he bought me dinner!!!!!

Jeff confided, "Now you know my secret: I think parents are really important."


Lydia

Summer 2013, Israel, Jordan and an hour in Brussels (slideshow)

Jeff arrives at Camp Ramah New England (photos)

Jeff, paper art and recent drawings (slideshow)

Bedhead

I have Medusa hair this morning.

____________________________ Jeff

New Rules

I had been going out with Greg about six months, when I happened to glance at his shoulder. "Oh my God, did I give you that hickey?!" "Um, no, that was someone else." I was momentarily stunned.

Welcome to the world of middle-aged, post-divorced dating. A few decades ago when we wanted a boyfriend, hook-up, FWB or spouse, our options were constrained to people we actually knew. In fact, we were limited to people we had actually been in the same room with! We had no idea then how impoverished our choices were. Not being in a demographic that has grown up with computers and Internet access, we have run amok with the infinitude of options online.

For my age peers who shudder at the thought of online dating, I can only shrug and say there really aren't other options. Compared to other dangerous online activities, online dating is pretty benign. It is, by nature, transparent. Sure, anyone can post a photo from ten years ago or ten pounds ago, but eventually if you actually meet, this deception is quickly unmasked. In the olden days, when dating depended on actual location, you had to suffer the indignity of running into each other, or continuing to be cordial while in the same social circle. No more, thankfully. Dates than don't work out simply and quietly go away, never to be heard from again.

And what about Greg? It has been almost two years, and we still go out. A new wrinkle in the middle-aged dating scene is honesty. I realized I valued both that and his friendship too much to stalk back to my computer in a huff.

Braces off!

Jeff gets braces off!

Jeff in Mexico, Jan 2013

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.

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.

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.
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?

JRC Simchat Torah Oct 2012 (photo)

Mush!

Jeff, on seeing three husky puppies in the car ahead of us, "That guy could have his own sleigh!"

Now they tell me!

THE NEW YORK TIMES: Science study shows autistic children are likely to wander.

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.

Country Summer at the Old Town School (photos)

We practice furtively.

We perform to accolades.

Post-camp report

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

_____________ Jeff

Guatemala, July 2012

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

Camp Ramah overnight (photo)

Cove Commencement events (photos)

Suit-fitting

Post-graduation party with Tim

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.

Jeff's Picasso (artwork)

Cove School Project Fair (photos)

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

I'm a social phenomenon

Devoted but Dateless

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

Dublin Ireland, March 2012

London, March 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.

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."

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.

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.

watercolor elephant by Jeff (art)

Old Town School of Folk Music gala opening-Beatles Extravaganza

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.

December 2011 (photos)

Performing at the Old Town School

New Year's out east with Julian and Chloe

Cleveland Rocks!

Mom, there is a sign here that says NO SINGING. I put it up myself.

Patrick Scanlon,
Manager of Visitor and Member Services,

I want to thank you particularly, and one of the guards, for making our visit to the Rock and Roll Hall of Fame and Museum very special.

As I mentioned, we had spent the past two days in Akron, attending my brother's funeral. Needless to say, it had been a terrible week for me and a rough couple days for Jeff.

I cannot express how thrilled Jeff was with his personalized tour and private Sting costume viewing. Afterwards, he said, "You know, they don't do that for everyone."

You really made our visit memorable and special.

Arnie

Obituary and guest book, Dec 6, 2011


"Remembering Arnie," Jan 25, 2012


Ted:

Before I share some thoughts about Arnie, I would like to give a special thanks to the relatives and friends who have come from near and far to Akron, even though it has been many years since the Stux Family has called it home.

But our roots are here, and I am grateful that you are all with us today as we remember Arnie.

I want to make special mention of Arnie's beloved Aunt Greta. As Allison has so accurately described it, Greta has a special and protective love for Arnie. She was not up to making the trip from California.

I knew one Arnie, and was always surprised by the others I discovered. He could be private, guarded, and even mysterious. We often joked that he worked for the CIA, and that all his supposed business trips just cover for his secret missions. If we had learned that it was in fact the truth, there would be no surprise.

My brother Arnie was always gentle and kind, without a bad word for anyone. He loved our kids, and Julian and Chloe loved their "Uncle Ernie." He could make them laugh, dance and sing, and always knew the perfect memento or gift to give them. During his visits, Uncle Arnie was at eye level with them, on hands and knees.

I can't ever remember him being angry, Or raising his voice, and I never remember arguing with him. As we got older we would see each other a couple of times a year, and talk on the phone and email, but Arnie never gave much detail about what he was doing, either professionally or personally. But I always had a sense of satisfaction and pride knowing that even though he was a man of mystery and didn't always share his exploits, Arnie had become a good man, living a life full of education, travel, sports, faith and friends.

Arnie went to Northwestern, then to the University of Pennsylvania, and finally to Johns Hopkins where he got his PhD. I always seemed to forget that he was Dr. Stux, my little brother, Dr. Stux.

Arnie travelled extensively around the country and internationally, giving talks to various engineering and professional groups, speaking on things that I can barely pronounce, let alone understand. He was a member of Toastmasters, something I just learned in the last few days, constantly honing his craft.

When he worked at Naval Research Labs, he was selected to attend a prestigious conference in Switzerland that Was a conclave of Nobel Prize winners in the Sciences.

Arnie was obviously very smart, but after his countless explanations of what he did for a living, I still could not figure out his work. Anytime I saw friends I grew up with, they would ask about my mom, Lydia, and Greta. When it came to Arnie, I would shrug, smile and say, "He is doing great. I don't know what he is doing, but he is doing great."

Arnie was involved with a martial arts group, and would sometimes go on what I called Ninja outings, which involved being outside at night, engaging in some sort of combat, from what I gathered. He played in a soccer league for many years, and was an avid hiker and runner. And let's not forget Ping Pong. Arnie played competitively until fairly recently, with success in each tournament entered.

Arnie's interests were endless. Piano and violin started at an early age. He was religious, active in the local Hillel, and could even read trope. He constantly took road trips, visiting friends all over the world. Turkey was a favorite place. He was rarely at home, and never just sat in front of the TV.

This renaissance man was just truly beginning to bloom, and has left us all too soon. His life cut too short, Arnie will be remembered by all who met him, worked or played with him, laughed or hypothesized with him. He loved his rich and full life every day, and your being here and all the messages of support we have received tell us how truly he will be missed.

Lydia:

What can I tell you about my little brother? We knew him and yet, he was unknowable. He possessed prodigious intellect, but told me several times about his joy in playing sports. I remember Arnie, ever the scientist, explaining to my boys how Lego blocks are made, but being equally comfortable shooting baskets with them.

I cannot enumerate Arnie's many hobbies and interests. I don't think I even know many of them. But that describes the Arnie I know and love. The things he liked, he pursued. Without showiness or fanfare. His passions weren't necessarily trendy or mainstream. If Arnie was interested in doing something, he did it.

Our mom says she is glad the music lessons paid off in a life-long love of music. In these past few days, I have looked for solace, comfort and quiet in my own music collection. The poetry of this song spoke to me so eloquently and profoundly.

The Valley
Jane Siberry

I live in the hills
You live in the valleys
And all that you know are those blackbirds
You rise every morning
Wondering what in the world will the world bring today
Will it bring you joy or will it take it away
And every step you take is guided by
The love of the light on the land and the blackbird's cry
You will walk in good company

The valley is dark
The burgeoning holding
The stillness obscured by their judging
You walk through the shadows
Uncertain and surely hurting
Deserted by the blackbirds and the staccato of the staff
And though you trust the light towards which you wend your way
Sometimes you feel all that you wanted has been taken away
You will walk in good company

I love the best in you
You love the best in me
Though it is not always easy
We will walk in good company

Photos of Arnie

HONK! November 2011, Deerfield Theater (photos)

New ESSC team skinsuits (photo)

WHERE ARE YOU, INKY BABY?? by Leila Handelman

YOM KIPPUR. SATURDAY, OCTOBER 8, 2011

“Hurry up, Leila. We have to leave for SHAARE TIKVAH BNAI ZION. Services start at 8:30 am. It’s already 9:10, and I have to be there when the past presidents are on the bima! It takes at least 20 minutes to get there!” exclaimed Neil.

“OK. I have to leave Inky’s food and water and clean her litter box before we leave. She’s upstairs in the brown room and didn’t come down with me yet. Having done the tasks, we left hurriedly, calling to Inky, “Inky Baby, your food is ready for you. We have to go to synagogue and will be back very late. Take care of the house. We love you!”

Checking all the doors first and then rushing out the front door, we were off to the long, long Yom Kippur day at STBZ.

Services were over at 7:30 pm. We had been invited to join Bill at a friend’s home for breaking of the fast way up north. Bill came out to get me, while Neil searched for a parking space. Upstairs to a very busy, crowded scene--to the buffet table groaning with all sorts of luscious dairy home-made dishes. Neil arrived. Our hostess invited everyone to come to the back porch where she blew the shofar for a Gadollah performance.

“Leila, Bill is going with me to our car, then we’ll take him to his car. It’s too far for you to walk. We will come back for you, so please wait outside. “Goodnight, my Father. Goodnight, my Mother,” and a kiss from Bill.
“Thank you, My Bill. I love you,” a goodnight kiss thrrough the open door, and back to 3501 and Inky.
It was 10:00 pm. “Inky Baby, we’re home!” we kept telling her as we climbed the front steps. Neil opened the front door, expecting to see Inky waiting in the hallway. No Inky.

“Inky Baby, Where are you?” NO INKY. Searched EVERYWHERE, constantly calling her.
Her usual places were empty--her Queen’s chair, the blue tunnel, climbing tower, chairs, couches, dining room table, Brown room upstairs, Bill’s room, our room, closets, basement, office…NO INKY!

“Neil, I don’t understand it. Where could she be?” “She’ll be someplace new that we don’t know about,” he responded. “It’s late, I’m tired. Let’s go to bed. First I have to take care of something. Leila! Look here in the mud room. We left the door open! I thought I had locked everything when we left!” He went out onto the porch, saw nothing, came back in and locked the door.

“Leila! Someone broke into the house! Come see what happened! One of the windows to the dining room has been smashed open, but it looks like nothing has been taken!
There’s signs of someone monkeying with the watches here on my desk. The bag with the camera is still here on the stool, there’s nothing out of place in the dining room or the kitchen. The computers are still here. Let’s look everywhere…maybe the burglars took Inky with them!”

“INKY BABY…WHERE ARE YOU?” Again a complete search of every possible place in the house,but now also in the back yard, the porch, the tubby-room, the alley …NOTHING!!!

“Let’s call the police immediately!” We were instructed, “Don’t touch anything, leave it the way you found it.” Two policemen arrived, with all sorts of questions, cameras, etc. to see if there was any evidence. NOTHING! “We’ll have another officer come to check for fingerprints, footprints, anything that might help,” they promised.

The outside storm window had been taken off, carefully leaned against the round table, the glass completely smashed out leaving a pile of the shards laying on the green “grass” carpet on the porch. The window had been unscrewed and opened up, the glass smashed out, the shards falling on top of the ones on the porch as well as the dining room floor. They had apparently been wearing gloves (no blood anywhere) and proceeded to crawl into the dining room through the smashed window frame. They took nothing, destroyed nothing, went through the watches box on Neil’s desk and then left through the mud room, unlocking the door to get out, pushing open the screen door, and disappearing.

“Here’s Inky’s picture. Can you help us and report her missing? She’s more important than anything that happened to the house.”

“No, we don’t do that. I will take a picture of your picture, but sorry. You have to do the searching yourself. We have all we can do to search for missing people! We an report whatever we can report and get the other policeman here for further research.”

And the police left.

We waited …and waited …and waited…No policeman came!
Neil went to his computer and printed up instructions on what to do when you have a missing cat.

It was after midnight when a police officer finally came.

“Sorry, I can’t find any evidence anywhere. I advise you to contact your neighbors to help you in the search for Inky. Contact the animal shelters; but we cannot help you find her. “

And SHE left.

Out on the back porch again. “Inky Baby, come to Momma” over and over and over.
“Neil dear, please put the floodlights on in the backyard so if she is there we can see her and she can see us.” Nothing.

Neil had to go to sleep. I couldn’t. Computer time to pass the hours. Out on the porch every 15 minutes calling “Inky Baby…Where are you? Come to Momma.“ No response. Composed an email to the family and very close friends informing them that INKY IS MISSING and that any plans we had might have to be postponed.

The information Neil had printed about what to do when your cat is missing had some excellent ideas so I put a pair of my shoes and the dress I had been wearing outside the back door. Filled her food dish and water and put it outside the back door also. Brought her cutie basket with her favorite toy mice (sprayed with catnip) to the porch in hopes that these items would entice her.

Back to the computer. Now it’s 3:45 am. Time to check the back porch again.

Opened the back door, and the screen door--nothing touched in the Enticement Department Items.
Looked at the Tubby House bathed in the yard lights, and gracefully coming around the corner was my lovely ball of calico fur heading for the stairs leading up to the porch and the back door.

“Inky Baby…Come to Momma!” Thank goodness there was no sign of any damage physically to her. She climbed the stairs, checked out the Enticement Items, ignored them, and walked into the mud room as though nothing had happened.

“Just taking a little walk, Momma” she seemed to say as she headed into the kitchen, the dining room, the bathroom to use her litter box and over to the broken window to possibly go outside again????

It was imperative to block that open window as best as possible until Neil could replace the broken glass. What is available at 4 :00 AM? Ah yes …put the 20” box fan in front of the window, pull the shade as far down as possible, move the drapes in front, and push the small cabinet against it all.

And who do you think is inspecting the entire operation right under my working hands? INKY HANDELMAN… pushing close to probably jump right outside again.

“No Inky. Don’t you dare!” I pushed her away. Thank goodness she knows what “No” means.

She was hungry. The wet food dish was filled quickly and she dug in very delicately. Then off to the living room to check out her belongings. Quickly she climbed up to the top of her cat tree and began an extended cleaning of her paws and tummy

It was time to bring in the Enticement Items from the back porch, and put them where they belong, but I was too tired to put my shoes and dress anywhere except on the stool at the door.

“Oh my … I’d better notify the friends and family that Inky is back!” So another email was sent to them …HOORAY … INKY IS HOME! Now we can all relax!

It was 5:00 am, and I finally climbed upstairs to go to bed. Had to read a few more chapters when I felt Inky Handelman, climbing on top of me for her nightly petting, then she disturbed Neil by trying to climb on his head and he quickly moved her off. “Everything is back to normal, Momma. I don’t know what you made such a fuss about!”

And so…today Neil and Bill have replaced the broken glass from all the windows and this epistle has been created Isn’t it lucky that we had no plans that required changing?

And that Inky is home safe and sound …until her next adventure.

Addendum from Lydia
What a relief and horrible adventure! I hadn’t seen your earlier email about the broken window and escape, but then I read through this one. I know Inky is happy to be home. She is a princess and I know she does not enjoy socializing with the lower-class outdoor rabble.

Senior year starts! (photo)

Jeff's first day of school, senior year at Cove

More Car Talk

I'm not going to sleep tonight. I'm going to dream about those cars ______Jeff

How did I miss this? All summer long, local owners of classic cars gather in a Skokie parking lot for a weekly, free, informal car show, sponsored by the local classic car club.

When Jeff and I happened to drive by last week, Jeff nearly leapt from the moving car. So we had to stop.

How perfect is this arrangement? Turn Jeff loose for an hour to revel in his element and hang out with a bunch of other guys who love to talk about their cars!

Nice note from the organizers of the show:
You so made my day! We work really hard to make a fun show for everyone and getting your note and pictures really makes it all worthwhile.

See you next Monday!

So Jeff set up his own mini car show in the basement.

Thing One, Thing Two

When people ask why I don't do outings with both boys together, I am hard-pressed to explain. Do they egg each other on? Is it because they set each other off? Um, sort of. Yes. Not exactly.

It has something to do with the extreme difficulty of having two closely-bonded, yet incredibly socially-inept children.

Recently before our daily phone call to Hart, I cautioned Jeff, "Hart has been having a rough time. We must really try to help him feel better."

So Jeff obediently took the phone, and without preamble said, "I got two new cool things this weekend."

SIGH. At least now, this kind of interaction is played out in two different zip codes. When both boys were here with me, no matter how angry, hysterical, or unhinged one was (or even, both were), they insisted on being in the same room, ideally occupying the same square meter of space.


I have tried to help Jeff make kinder, more empathic and socially-aware choices--if you were sad, would hearing that make you feel better or worse?--Jeff understands, but the concept doesn't stick.

Children With Autism, Connecting via Transit (NYT)

Children With Autism, Connecting via Transit

Front page article of the Sunday New York Times!

Jeff and I have been to the London Transport Museum and we make a pilgrimage to the Petersen Automotive Museum whenever we are in Los Angeles. It is interesting that museum officials are now catering to this specific target audience.

Jeff is older than the children featured in the article, so I have some perspective. I applaud the parents and museum staff for nurturing these kids' passion in positive pro-social way. However, we parents also have to urge our kids with stereotypical interests to see other things, try other experiences.

It may have been charming ten years ago that Jeff liked to talk about cars, but a decade later, I still have to cue him to change the subject or respond to the topic at hand.

A wise parent once told me that we have to give our autistic kids time in their world, but on the other hand, we have to patiently insist that they spend time in our boring, neuro-typical world, too.

Hart and Jeff at 18 (photos)

SEUSSICAL the Musical (photo)

GAP Adventures "The Best of Turkey" (slideshow)

Designs of Turkey (slideshow)