June 27, 2009

Away, again

"Hart ran out of the house today. He made it a few blocks away, but according to our procedures, police had to be summoned. He's safe now," said Hart's case manager when he phoned yesterday. Whew, that's a relief.

"That's the good news." That's the good news! &#%$*#!
Welcome to my world, where news of elopement and police capture are the good news. What possible mayhem can follow as "the bad news?"

"The group home doesn't seem to be working out."
I must have let out a long quiet sigh of relief. I have quietly considered this myself over the past few months. That phone call must have been a mere formality: Hart's behavior has been so unpredictable and difficult that the decision has already been made to move him back to the main campus.

Sigh. This is Hart's theme: Sabotage your own best interests. My theme: keep trying new and less restrictive options for Hart, hope for best, until the inevitable phone call comes.

Hart is NOT going to like being "demoted" back to the main campus. But I also know that the issue is not what he wants but what he needs: a more structured and restrictive setting. It was his success in this environment that enabled him to move to the group home! In hindsight, should I have been more adamant about delaying the move? Hart wanted to move to the group home so much . . .

"You can explain that it was our decision," offered the case manager. "That way, he won't be angry with you." Thanks, anyway. But I prefer the message that even though I am far away I am always Hart's mom, still active in and aware of his plan of treatment. I am, sigh, used to being the bearer of disappointing news.

June 22, 2009

You Look Just Fine mailbag

Dear YLJF,

Today, while running errands, the grocery store cashier mentioned that I looked "comfortable." Is this a euphemism for looking sloppy or unkempt?

___________________________________ Mortified

Dear Mort,

Of course not! This is the 21st century--comfort is the greatest goal of fashion. Or are you still wearing a girdle and white gloves when not running errands? Perhaps you have not been to church lately either. If shorts and flip-flops are good enough for God, they are good enough for the Piggly-Wiggily. Lighten up.

June 18, 2009

Just say Maybe

Let's talk about drugs. Not the illegal, illicit, recreational kind . . . the real stuff, the meds a psychiatrist prescribes for people with neurological and mental impairments.The ones Hart and Jeff take.

Let's say you are a parent of a typical child. Perhaps you are thinking, "I would never permit my child to take psychotropic drugs, especially those prescribed off-label." My advice to you: Shut up.

Say you are a parent of a 7- or 8-year-old who is beginning to have difficulties in school. You know your child has always been extremely sensitive and high-spirited, but now school professionals are suggesting a medical workup and possible "pharmacological intervention." My advice: Just do it. You will have to do it sooner or later. Possibly you may be among the many parents who, after great soul-searching, agree to medication and find that it is wonderful. Your child is focused, attentive, and suddenly, a joy to be around. Case closed. You will wish you did it sooner.

However, there are lots of parents like me. My boys' impairments are so significant, so severe, that I have agreed to a medication regimen in hopes of mitigating their difficulties just a bit. If medication can make Hart and Jeff a little bit more available for classroom learning, a wee bit less impulsive, a tiny bit less agitated and anti-social, I figure, it is worth it.

But now, I have entered the next soul-searching phase. On his last visit, Hart appeared to have developed a tic or a tremor. In my head, alarm bells went off right away. We parents conferred: doctors and staff conferred. A period of observation, a battery of tests, careful study of behavior as Hart's medication is adjusted.

This is the yin question to my original yang decision: how much quality-of-life improvement does Hart's medication make? If the meds only make the tiniest difference, are they worthwhile at all?

June 10, 2009

Heart of Glass II (photo)

Memorial Day JRC Kallah (retreat)
talent show: Blondie's ONE WAY OR ANOTHER

June 9, 2009

RR&R welcomes new readers

In the past few weeks, a number of old friends, acquaintances, and friends-of-friends have stumbled across this blog and phoned or emailed me to tell me that they have found it enjoyable and entertaining reading. At least, that's what they say to ME.

Parenting two kids with Russian-Adopted-Kid-Syndrome (RASK), or Autism-Lite, as I prefer to call it: what's not to laugh? If you talk about disabilities, perhaps you are expected to be dour and serious. I do that too, generally at IEP meetings with an attorney present because the lawyers charge by the hour.

For the first few years with Jeff and Hart, it was like living with two feral tiger cubs. Hilarious. In recent years, it has been more like having two aliens in the house. I have to constantly explain human customs and mores. Hysterical.

I thought I was pretty funny even before I had kids . . . maybe my source material has just gotten better.

June 3, 2009

Don't Feed the Animals! (Part II)

Gift-giving must be as old as humanity itself. Among us social animals, it’s shorthand for “You are special to me.” Human communities have fairly elaborate gift-giving rituals. So why then, have I taken such drastic steps to eliminate this veritable torrent of stuff that well-meaning people are constantly pressing on Hart and Jeff? I can only report how repellent I find this continuous stream of presents. I must be the most awful, hateful parent to try to stamp out the gifts, toys, goodies and treats. I write memoranda (to all teachers every year), lecture to sitters and caregivers, email preliminary notes to camp counselors. All my efforts are fruitless anyway.

I have a few theories about my strong feelings about this.

The nightmare of every adoptive parent is Reactive Attachment Disorder (RAD). Untreated attachment issues are a straight road to sociopathology. Toddlers who have spent most of their early lives competing with others for care and attention, as Hart and Jeff did, are the worst opportunists: food and individual attention in an orphanage are scarce. They are survivalists because they have to be. I have spent over a decade reminding the boys in an endless litany that I provide things for them, because I am their mother and I love them, “that‘s what moms do,” only to be undermined by many well-meaning, but clueless, adults in their lives.

As a result of this early deprivation, the boys feel a sense of entitlement that is a source of constant mortification to me. If a caregiver brings a cookie once, you can bet that Jeff will ask, “Where’s my cookie?” before saying hello on every subsequent visit. To caregivers’ surprise, I step in, and announce gently, “That was very kind of you. Please do not do it again.” The boys’ habit got so bad a few years ago with a number of babysitters that I told Hart and Jeff directly many times, “She has her own children to take care of and buy things for. That’s how she uses the money I pay her. It’s MY JOB to provide things for you.”

One might think that with all this largesse coming their way, the boys would be gracious gift receivers. They aren’t. If I allowed it, every thank-you note Jeff ever wrote would begin “Thank you for the car. I have already broken it.” And if the goods aren’t forthcoming, Jeff will demand them. In fact, I considered writing ahead to our hosts in London and Copenhagen to warn them. I would have done it if I could have thought of any reasonably polite way to say, “Thank you so much for your hospitality. Jeff is sure to sniff out any toy cars in your house. Please do not give him any when he finds them.” Miss Manners and Emily Post are both surprisingly silent on this subject.

Would it be nice if Jeff donated or shared some of his extensive collection of cars? It would be, if he hadn’t outsmarted a number of adults with a clever ploy. When a respite worker suggested choosing a few (hundred) toy cars to donate, Jeff was eager to comply; I quickly realized this was an excuse for Jeff to spend three hours, lovingly going over each and every one of his cars before deciding he could not part with any but the completely broken ones. Scammed again!

When his little cousin visited, Jeff asked me if he could give Julian some cars. I was then appalled to hear Jeff evaluate each one carefully. “Here, Julian, take this one, it’s totally broken. And this one, it’s a piece of crap. These two, they are jalopies now.” Note to self: work on gracious gift-giving, too!

In a word, these unsolicited gifts are nothing but trouble. There’s a momentary emotional pay-off for the giver, I am sure, but I have had to deal with years of disciplinary measures related to the booty: toy cars, Pokemon, Yu-Gi-Oh cards and toy horses. The cards and cars are contraband at Jeff’s school now, which explains why all his classmates unload them on him. This has driven the trade underground. The idea was to discourage the distraction at school, of course, but the result it that it has made Jeff wilier. If there is a troublesome toy in our home, you can bet it was from well-meaning classmate, teacher or caregiver. Large toy horse? Check. Furry blankets, the source of much twin hysteria? Check. $20? Jeff stole some of Hart’s cards and “sold” them at school.

Here is the real question: Are my children so needy, so pathetic that almost everyone who is in contact with them showers them with gifts? Do they imagine that the boys are consigned to life to want, despair and drudgery, if they don’t provide goodies for them?

Here is a question I want answered: I want to know if “regular” kids get this much unsolicited stuff, or are “disabled” children somehow more deserving?

Maybe I am jealous. I cannot remember a single time outside of a birthday party when non-relative bought me something. If memory serves, I still had plenty of stuff.