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.