Tales from the Shark Tank

I won’t miss you.

New Year’s eve seems a good time to resurface here. Actually, the problem has been an shortage of web access and of time. I decided to stay in Indy with Joseph after Christmas, because I couldn’t face the notion of another week bound to the house with a restless boy and no place to take him other than a bun-n-run playland. In Indy both our son and I have family, friends, and places we know and like to go, like the Children’s Museum.

The plan had been to move over to the home of some friends of ours after Christmas to make room for the next installment of my husband’s siblings to arrive with family. We stayed there Monday and Tuesday nights. Then came the on-again off-again dinner plans with my in-laws. It waffled back and forth at least 4 times, while my son played with his best friend from our old neighborhood. Those two little boys have missed each other so much, and they were so delighted to be together again. I think, with some assistance and cooperation by parents, they can be friends for a long time. I still have a couple of friends I made when I was in second grade, so why not my son?

On Wednesday morning, the nursing home called in regard to our friend’s mother. They thought she was getting ready to leave this earth. I simply assumed that we would have to decamp, either to make room for their suddenly summoned family or simply because there is a time when even the closest friend is an intrusion. So we made the necessary arrangements and betook ourselves to a hotel. Of course, Wednesday was the day I’d promised our son a trip to the Children’s Museum with his grandmother, and the day of the House Entropy Midwinter gathering. And we managed to do it all, without a problem. There were way too many people in the museum, and while it bothered our boychick somewhat, he managed to keep control of himself.

Thursday saw him playing with his buddy again, while my friend Li showed me how to do a full yoga routine that worked through and around all the wild and wondrous things I’ve done to my body over the years. For example, I can’t kneel flat down on one of my knees, so four-point stances aren’t possible. Li figured out how to convert them into seated exercises. I was amazed, and absolutely delighted. Then Thursday evening we stopped in to spend some time with Li, and finally went back to the hotel. That evening was the first sign of stress I saw in my son’s behavior, and it wasn’t particularly bad. He threw a minor snit, not a full tantrum.

And now we’re back at my in-laws, in their absence. They had a week’s trip to the West Indies scheduled, and left at an unholy hour this morning after the final family gathering last night, at which the last of the presents were distributed among the cousins. Only once a year, if we’re lucky, do we get all five cousins in the same place at the same time; last night was it for this year. Once again, our son was up a bit past his bedtime, and this morning he had yet to quite have his good temper back.

But that brings me to the best part of the week. Through all the changes, all the moves, all the uncertainties of what we were going to be doing on any given day, our son kept his equilibrium and took it all in stride. I am so proud of him I can’t begin to say it. Exactly this sort of switching-around is what caused the disastrous melt-down in June. I didn’t even see a hint of anything like that this trip. Granted, we’ve decided to stay home tonight because we’re seeing signs that the equilbrium is getting a wee bit shaky, but we’ve done something social every single evening until now. I think we’re seeing another quantum leap.

Tomorrow I’m going to try to see something more of Li and of our friend from Louisville, and take our son to see my parents one more time. And then we’ll be going home. It’s been a fabulous week. I’ve had time off, and good times with my kid both. I’ve spent time with the people I love. And I’m feeling re-charged and ready to tackle my life again. I’ve not felt this good in over a year. I think that’s the most wonderful thing of all.

Update: Since some of those who read this will have a pretty good idea who I was talking about: it turned out our friend’s mother had had a minor stroke, from which she had recovered 24 hours later. She’s in late-stage Alzheimer’s, so it was hard to tell the difference, but the next day she was up in her wheelchair, out in the lounge and talking more than she had in months. That had continued to be so as of Saturday, when we met our friends for lunch. They’re handling the roller-coaster as well as anyone can, but things are still pretty tightly wound. Those of you who know our son’s godparents, that’s the current status report. If and when anything happens, I’ll let you know.

A few days ago I’d had a bad day with my son, and blogged it. Since then I’ve heard from a friend of mine. He is the oldest of four children, the youngest of whom is autistic and far less functional than our boy. I hadn’t stopped to think that he would have been given charge of his youngest brother, but clearly he was. He sent me a long e-mail, telling me things that worked for him in dealing with his brother, making suggestions of ways to get a point across in a way that also defuses the confrontation and the unacceptable behavior. Most of them were indirect. Indirection doesn’t come naturally to me; I had not thought of using it.

I just got his e-mail yesterday, and have already had multiple opportunities to test his advice. Basically, it involves absurdity (making the kid laugh, which breaks the repetitive behavior pattern) and focusing the “discipline” on an object rather than the child himself, which takes away the resistance factor. The kid isn’t being bidden to change his behavior to meet some incomprehensible norm; he’s being asked to change the “behavior” of a thing – without realizing that to do that his own behavior has been changed. I know the man who came up with this reads this; the e-mail was in direct response to my expression of frustration. So I say here that he is brilliant, probably far more than he knows. And here, in this very public forum, I say “thank you”. You’re a wonderful friend.

Our son is eight. He comes about half-way up my shoulder, and he’s as skinny as ever. And just now, he asked me for his third melted cheese sandwich (basically a grilled cheese made in the microwave instead of in a pan), and is calmly devouring same. Where is he putting it?

I just got word that my youngest foster-daughter, Keegan, was in an accident. She’s ok, Thank G-d. That is per my older foster daughter the physician and the E.R. doctor. She has bumps, bruises, and minor concussion, and is staying with her best friend and her parents. They’ve taken good care of her before, and I’ve no doubt will now. (And I’ll be checking on her my own self over the next couple of days, once I’m in Indy.)

The car, on the other hand, is a total loss, and Keegan is still at the stage where she lives very close to the margin of income. Now she will be making payments on a car that no longer exists. So what I’m tossing out to the world at large is her need of a car. It need not be a thing of beauty, it need only run reliably enough for in-city driving. We’ve a large enough Household/ chosen family that if such a thing is available, we can arrange for someone to come get it. And if exchange of currency is involved, whomever is on the receiving end needs to be willing to work with us over a period of time.

I’d never do something like this for myself, but for my foster-daughter? The answer to that question is before your very eyes.

As I was writing the last post, the phone rang. I expected it to be my beloved husband, telling me he was on his way home from work at last. It wasn’t. It was my friend from South Bend, whose husband left this earth last June. The family had a friend who’d helped them out tremendously, who was there whenever he was needed and then some, who has been, in essence, chosen family. His parents made the dinner served after the memorial service. They’re that kind of friends, the kind I generally call “chosen family”.

Now they will be family in truth and in law. My oath-sister and the man who was a friend to both her and her husband for the last 15 years at least are engaged. She is over the moon. Her son seems to be both comfortable with and happy about the idea. I am so happy for all of them that I could pop. It’s happy dance time!

Today’s mail brought something that leaves me pensive and rather sad. It is a holiday card from my aunt and uncle in Seattle. It’s a photo card, taken recently. The two of them look about the same age, but Uncle is nearly 80, and Aunt 63. It shows them with their granddaughter, a lovely blond toddler, and all of them are laughing. It seems impossible that so much could have changed in so little time, but last week, Aunt Barbara had a heart attack which she did not surive. My uncle must be in shock. I’ve both called and e-mailed him, but haven’t heard back. That’s ok; what’s important is that he hear from me, know we’re thinking about him, not that I hear from him.

My memory, of course, holds far more pictures of Barbara – holding her daughter at about the same age her granddaughter is now, telling my parents I was old enough to attend a rock concert at 16 (they didn’t let me go, but I appreciated the attempt to intercede), showing me a set of photo montages she was working on when Wick and I went to Seattle and stayed with them, showing me around the library at which she worked, that was her pride and joy. She was very good at enjoying life, and that is how I will remember her.

Looking at the picture, it’s clear they were having the time of their lives, enjoying themselves and that baby girl tremendously. I’m very glad they had such a time.

I tried to post a comment on the blog of a friend who has a spam filter. It objected first to “dish tv”. Ok, that can be an ad; I changed “dish” to “satellite”. Now it objects, not to the phrase, but to the word “satellite”. Now maybe I don’t have a sufficiently devious mind, but how can an astronomical term be objectionable? I don’t get it.

I was talking to my friend K. this evening, she who is the other half of my brain. She wanted to know why I was so tightly wound, so I told her. Mostly it was that our son was in pill mode, in ways that are unique to autistic kids and utterly maddening to people who don’t think the same way. As pointed out to me last weekend, our son’s use of language is only an approximation of what he wants to say, because he doesn’t have the means to express it. I don’t exactly have a linear brain myself, but I cannot follow the nested spirals of his, nor can he understand mine. I understand intellectually that he can’t process verbal explanations, that he needs for everything to remain consistent right down to the color of the box the hot-dogs come in because the color of the box is part of the identity; it can’t be the same hot dog with the same flavor in different packaging.

But today it seemed as if I existed only to gratify his whim. He got furiously angry when the store that used to carry the hotdogs in the red box no longer had them, and directed it toward me, telling me how horrible I am, how rotten, and on and on. I told him the discussion was closed, refused to engage with him, told him to stop, and finally, when he tried to grab my chin to force me to look at him (something I do to him when I need and cannot get his attention, on advice of his speech therapist) told him that if I heard another word he’d be in his room for the day. But it’s very hard to keep that up when I’m so frustrated with my own inability to communicate with him I’m ready to scream; when I’m so frustrated with his inability to either convey what he means or let it go that I want to backhand him into next week. He got a bath when we got home; that kept him contained and away from me for about 20 minutes, time enough to calm myself down. K.’s comment was that someday, someone will figure out a consistent way to discipline an autistic child that works. And if that happens, then I will bow down and kiss their feet.

My son was endeavoring to compliment me this evening. So what does he come up with? “You’re really cool, mom. You’re as cool as yummy pizza!” And then he wants to know why I’m laughing.