October 26, 2014


I have a vague recollection that I saw Yo-Yo-Ma perform when he was a teenager, and that I heard the famous ethno-musicologist Alan Lomax speak when I was in elementary school. However, I can't be sure. After all, memory is a "save-as" function. We overwrite every time we call up a memory and now there is no one to verify these memories for me.

It was a different time, I keep reminding myself. Parents didn't feel an obligation to explain things to children. Children were expected to behave appropriately and like things their parents liked. I know I went to lots of classical music concerts with my parents, where I was obligated to sit quietly whether I was interested in the music or (mostly) not.

My approach has been different. I am sure of the special events I have shared with the boys, even if they don't seem particularly noteworthy at the time. I know that Jeff has very little patience, even for things he enjoys, so sometimes I make a deal, sometimes I insist on my own enjoyment and sometimes I just capitulate. Our seder in Vienna dragged on and on, with the rabbi covering the entirety of the Haggadah in Hebrew, German and English. A few hours went by and Jeff was fidgety and begging to leave. "I know you are bored, but we will never be here again for this, so we should stay," I said. Opening night at the Abbey Theatre in Dublin was amazing and I realized that ALICE IN FUNDERLAND was too topical to ever travel beyond Ireland. At intermission, Jeff wanted to leave. "It is opening night. We are the first ones to ever see this play." So we stayed.

Over time, I know we will only be grateful that we had these memorable experiences and not a sigh of relief that we missed the second act or the headline performer. If only someone had told me who I was seeing back when I was too young to know or too young to appreciate the experience.

September 26, 2014

Time is on my side . . .

I think the time wants to get rid of me. It wants to move on to another day.

___________ Hart

September 5, 2014

The Covenant Foundation, September 4, 2014, (article and slideshow)

Location: Palmer, MA | Category: Covenant in Action
Reimaging Arts and Crafts: G-dcast Goes to Ramah

Palmer, MA, Sep 3, 2014—It was like the premiere of a blockbuster movie, only it all happened at Camp Ramah in New England.

Moving Day

When the boys were very young, I used to imagine what I would be doing at any given moment if I had typically-developing children. In the intervening years, I have strayed so far from the path of "normal" that I cannot even see that path, or remember what it looks like. However, now that the guys have turned 21 and are relunctantly starting on their independent, adult lives, I had a vague notion of what seeing one's first-born off to college might be like.

I get ahead of myself! The past year has been fraught with a looming deadline. At age 21, Hart had to move on from Allendale Association where he has been for three years. He loved his group home, although he chafed under the rules and strictures which were designed to manage unruly, disabled teenagers. So the search for an adult living situation began! There are two major threads of this effort, which are both independent of each other but intertwined. The order in which documents are completed and submitted is paramount. It was a Kafka-esque journey.

First, one must qualify for goverment benefits as a disabled person. This doesn't seem so difficult based on Hart's life history. However, even other parents of disabled children are incredulous that I worked to get Social Security benefits and Medicaid for almost two years. Still, I am occasionally summoned to the SSI office and I dutifully appear with my accordion file of documents: guardianship, bank statements, citizenship papers, adoption decree, etc. I speak to a clerk who dutifully complete the forms on her monitor, assures me everything is in order and, am dismissed until the next summons.

The second piece is much like the college application process with an evil twist. A caseworker submits applications on Hart's behalf to potential agencies all over the state, and based on the availability of beds, houses, and whether any place is equipped to handle Hart's particular needs, the matchmaking begins. Only in Hart's case, there was only one potential match. Upside, it was our top choice, Jewish Children and Family Services here in Chicago. So, the vetting process began with JCFS, its group homes, families and current residents. Reams of documents wended their way from our local school district, doctors, Allendale and JCFS to the black hole of a bureaucratic desk in Springfield, very slowly, as Hart's 21st birthday loomed. And then, the light appeared at the end of the tunnel. 

In August, Hart moved in to Migdal Oaz, JCFS' residence for young men in the Rogers Park neighborhood (exactly 3.6 miles' drive from my house). Our school district suggested its post-high school transition program and offered cab service to get Hart there and back.

As moving day approached, I imagine that Hart engaged in something similar to pot-latch, bestowing many of his possessions on his friends and housemates in Waukegan. Thus, he had a small suitcase of clothes, a bin of books and other treasures, and $200 in cash when he left Allendale. While he was enjoying a welcome barbecue with his new housemates, I made a quick trip to Target. Presumably that is the closest I will ever get to organizing a dorm room or a first apartment. Within 30 minutes, I had purchased sheets, towels, a wastebasket, a laundry basket, a shower caddy, plastic hangers, an electric razor, toiletries, underwear, pajamas, socks, and returned bearing the bounty to organize his new room. 

And now I am done . . . . until Jeff decides he wants to move out.

August 3, 2014

The Tattoo Quandry

No, no, no, I am not considering getting a tattoo. I don't like them. But, I mean that in the most general and abstract way. I say I don't like tattoos in the same way that I don't like lima beans or watching golf. 

My reasons are completely unoriginal. I don't find them attractive. They are permanent. They aren't particularly alternative or retro anymore, since almost everyone under 45 has one. 

I am not discriminating either. I can't tell the "good" ones. The content doesn't seem to matter much. It just looks like a mass of blue ink with some red thrown in. I correct myself: I can recognize scary tattoos. Those are overlarge, facial or neck tattoos, ones that creep down from shirt sleeves. Yeah, yeah, I have seen the mastectomy tattoos. Very nice, but that is hair-splitting, really.

But now, I have to reconsider. Not reconsidering getting a tattoo. That will never happen. Yes, it is against my religion. But since I am not conscientious about all the other 612 Jewish commandments, it is disingenuous to hide behind that rule. I mean I am reconsidering my reaction to friends with tattoos.

I am not superficial enough (excuse the bad pun) to judge someone positively based on their ink, or negatively. However, I recently offended a new acquaintance by saying off-handedly that I don't care for tattoos. By his reaction, I came to realize that tattoos are so personal, so much an extension of the person, that it is almost tantamount to saying, "I find your religion stupid." There is a story there, a commemoration of a notable experience. To be cavalier about that is mean-spirited and small-minded.

I apologize sincerely. 

I am still not getting a tattoo.

May 30, 2014

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.

April 7, 2014


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?

March 17, 2014

Jeff wears shorts

Wolf legs!

____________________ Jeff

January 11, 2014

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.