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.
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 9, 2012
May 4, 2012
S**t Jeff says
"I have more brain power now that I shaved. All that fur was disrupting my concentration."
______________ Jeff
April 29, 2012
April 24, 2012
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.
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.
February 10, 2012
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.
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 9, 2011
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
November 23, 2011
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