Health care reform NOW!!!

My daughter was very sick last week, and after a phone consultation with a pediatric nurse, we took her to an immediate care center, where it could be determined whether she needed IV fluids. We decided to try a newly opened place, because we thought there would be no wait.

Well, we were the only people there besides the staff--three women in the reception area and a doctor we saw through the window, just sitting around. The woman who came forward to help was very friendly. And stunningly incompetent.

She obviously had no idea how to use the computer system, and had to keep asking for help from the other women, one of whom seemed to be wincing with a headache. When I showed her my insurance card, she seemed mystified. She sat and looked at her screen for several minutes. Then she turned around and asked the others what she should do if there was no ID number on the card. It actually says on the card that the ID number is my SSN. So I volunteered this information, hoping to speed up the agonizing process of registering.

Meanwhile, my daughter is so sick that she doesn't even try to get out of her daddy's lap to explore. Her eyes are sunken, her face pale, her lips cracked, her body limp. We are both very anxious about her health, having seen her in a similar state two years ago when she was hospitalized.

After half an hour of trying to get registered, the woman ushered us back to a room, where we were horrified to discover that she was also our NURSE!!! We exchanged glances while she ineptly took Grace's temperature. She asked us a series of bizarre questions regarding my daughter's vomiting, again displaying total ignorance of the computer she was using to document the encounter. After what seemed an eternity, she finally left the room.

The doctor seemed nice, and gave us suggestions for rehydrating Grace and preventing more vomiting. He finished up by telling us he'd have her prescription ready in a few moments. Hubby took Grace out to the car while I waited. I sat and sat and sat, watching some terrible Lifetime movie in the waiting room. I offered to pay the copay. The nurse seemed surprised--"oh? There's a copay? I didn't see that on your card." Argh!!!!

Meanwhile the doctor is standing a ways back, obviously doing something with a computer. After a half hour of waiting, he finally came out with a handwritten Rx. Argh! Double Argh!!

I'm guessing "immediate care" is just a suggestion.

Hakuna matata

Over the summer I played in the wedding of an acquaintance. Her grandfather, a minister, gave the sermon, and spoke about the difficulty of moving beyond the initial stage of being in love to putting in the hard work required to make a marriage work. I sat, sagely nodding my head, knowing exactly what he meant, and looking at the young couple with stars in their eyes who thought they knew what he meant, but actually had no idea what they were in for.
It has given me food for thought recently--not just young persons' inherent disregard for older persons' words of wisdom, but also older persons' inherent desire to try to get their message across, despite having once been young themselves. It seems that most of the more difficult lessons in life are only really learned the hard way.

Another thought that struck me during that ceremony was how the culture of our times has moved away from the multi-generational society. Families used to be the center of life--people lived with extended family out of financial necessity. The roles of women were defined very narrowly as the center of the family at home. The various stages of life were marked by rituals that were meaningful. The young were shepherded through difficult times by the generations before them, who had been through those same difficult times.

No doubt this pastoral scene I've laid out is rather naive. People also used to be less educated. Women were not allowed to choose their lot. Dysfunctional behaviors continued from generation to generation because no one was exposed to the possibility of a different path.

However, I think maybe we've gone too far the other direction. Children learn to be disrespectful pretty early in their lives. Instead of staying connected to our elders, we move out on our own as soon as possible, choosing to spend all our time with people our own age. We avoid family gatherings and the rituals that they often surround. Because of the loss of rituals, we lose the perspective of ourselves within the larger cycle of life and death. We connect only over the ethernet--anonymous and reinventing ourselves. We watch TV shows that distort the world and we believe that distortion, and make it the real world. Once television got a firm hold on our collective imagination, the young and the pretty became revered, leaving the wise out in the cold. Katie Couric's recent triumph is an example of this trend. Men and women have disfiguring surgeries to perpetuate their own delusion of youth instead of embracing their steady path towards old age.

We should be more aware of the circle of life--our food, the seasons, each day, our own mortality.

Hope

I just wanted to post a little about my daughter, who's been taking great strides developmentally these last months.
She has become more interactive, turning when I speak to her, responding intentionally to instructions, taking turns, playing "games" with us. She has become more responsive to her environment, less dependent on the same repeated episodes of Sesame Street. She wants to be outside all day (even on days like today, stiflingly hot and humid). She is curious about what mommy is doing in the bathroom, and even showers with me daily. She has been babbling. She tries to grab food away from me and is actually eating again, after a year of turning her head at the offer of any kind of food but milk. She has tried new foods and voluntarily put them in her mouth. We had begun to believe that she would need her feeding tube the rest of her life, but other possibilities are peeking over the horizon.

All of these changes are occurring in a time when she has very little in the way of therapy, which has led us to look back over the last few years, when she was in therapies several days a week. How much of her progress was actually a result of her therapy? She seems to make progress when she decides she's ready to do something new or more difficult, not when an adult tries to force it on her. She decided she wants to eat, so she'll eat. My guess is that she will decide to talk when she's good and ready.
(I should say that we do believe that some of her therapies have helped us by showing us new ways to approach her, letting her initiate activities, and turning it around on her, to show her the possibilities.)

Anyway, we are encouraged! We don't know what the future holds for her, but we know that she will likely exceed our expectations.

At least I've got more discipline than some....

It has been a long time since I have written here. There have been two reasons for this: 1) I have had trouble staying healthy for the last few months because of sleep deprivation, and 2) I was practicing for an audition. I haven't taken an audition since my daughter was 9 months old, and before that it was several years.

For the fortunate who've never taken a symphony audition, let me try to describe the process.

When a position becomes open in an orchestra, an ad will appear in the national union paper. You send in your resume, and they send you a list of music to prepare. You show up at the audition a few months later, along with the 30-200 other hopeful musicians who have also been practicing insanely and probably had more time to practice than you. You all sit in a room together talking and/or practicing until a practice room becomes available for each person. Sometimes this means sitting in that room for eight hours, sometimes you get a private room for most of the day, depending on the facilities. When it's your turn to play, you are escorted on a carpeted path to the stage or other large room, where you play a list of excerpts and solo pieces for the audition committee, who are most often hidden behind a screen, to make sure the audition is fair. When they have heard enough (usually about 10-15 minutes) to decide whether you are good enough, they say "Thank you" and you are escorted back to the room where you wait what seems endless hours. The committee listens to a number of people, then takes a break to vote. They may select some people to move on to the next round, or they may send everyone from that group home. After they have heard everyone from the preliminary round, they hear those who passed on to the semi-finals, following the same process to select finalists. The final round is usually without a screen, and the music director is usually present. After the final round, they select the winner(s) or not.

In the case of my most recent audition, I received the most votes in the final round, but still did not get selected. They were apparently looking for a higher level of playing and experience than I have. This has been very difficult for me to deal with emotionally, but I feel that I grew as a musician through the process of preparing for this audition.

I am one of those lucky ones who can get by with very little actual work on the violin while still playing pretty well. I have always avoided practicing, even as an adult. When I was 10 my mother would feel whether the TV was warm to see if I had really practiced while she was gone! In my middle teen years circumstances made it difficult to avoid practicing--we lived with my grandparents who were always home and very strict about such things-- and for a few years I practiced 3 hours a day. When left to my own devices, I was most likely not going to practice. When I went to prestigious Meadowmount School of Music the summer I turned 14, I was supposed to practice 4-5 hours a day. We were monitored closely, but I still managed to play solitaire for many of those hours. Miraculously, my playing still got better that summer.

In college, I was more motivated, but panic practicing was my modus operandi. I also had not yet developed good practice techniques. I had always just repeated stuff when I played it wrong. During my junior year a pianist friend taught me a few exercises with rhythmic practice which worked like a magic trick on difficult fast passages. That made it possible to learn more in a shorter time, but didn't really teach me discipline.

At the end of my junior year, while preparing for a difficult jury, I developed some arm problems that made it painful to hold a book, much less play a Paganini caprice. That whole summer I didn't practice much, and when I returned in the fall my wrists were better and my technique was not so great. I foolishly signed up for my senior recital in October, which left me less than 2 months to learn the repertoire. My recital was mediocre, complete with memorization problems. That whole year I struggled with my identity of myself as a violinist. Who would I be if I couldn't make it in music? Having grown up in a musician-glutted family, I had always just assumed that being a musician was the thing to do. I was passionate about it, and had from an early age identified myself as a violinist. Now that my future felt insecure, I didn't really know who I was.

After graduating, I loafed around my grandparents' house for several months, taking long walks, trying to drum up some violin students. Meanwhile, all my friends were pursuing graduate degrees. I felt fairly useless and hopeless.

I took an audition for a regional orchestra, and won. I slowly started freelancing, gradually accumulating enough work to get my own apartment. I made very little money in those years, but I enjoyed myself, playing a variety of gigs--opera, symphony, weddings, teaching, chamber orchestra. I never practiced.

One year I decided to put on a recital. I practiced for that, and thought I made some improvements. On listening to the recording, I was horrified at how bad my intonation was. I decided to take some lessons with a local university teacher, and she was just what I needed to get back to some of the niceties of violin playing. I took an audition for a more substantial job and won a temporary position. I started taking auditions left and right, surprising myself by getting past the first round a few times. Eventually I won my current job.

After being here for a while I took some more auditions, but decided that the stress was putting my health at stake, so I finally settled down and bought a house. Again, I settled into minimal practice time. Why practice when I could be doing other fun things like reading, watching TV, being outside? After meeting my husband and having a baby, my practicing became a faint memory.

When this most recent audition was advertised, I decided to go for it. Concertmaster in my own orchestra sounded pretty good to me--if I won I'd make more money without having to move! I knew it would be a challenge when I got the repertoire list: it was mostly music I had never played before, and also mostly virtuosic. What I didn't expect once I started working on it was that this challenge would bring me to actually enjoy practicing. I was paying close attention to detail, but also to the larger shapes and phrases, trying to understand the forest of music instead of just looking at the individual trees of technique and perfection. I became more attuned to the reasoning behind musical choices. I was learning music without the aid of a teacher, and discovered that I can make good music without someone telling me exactly what to do. I was hearing and feeling results. I felt good about my playing for the first time in years. In addition, the precious time alone with the violin became a bit of a break from being a wife and mother. It was as though I was revisiting my childhood dream of being a soloist. I felt that I had never played better. What would have happened if I had practiced with this much passion and interest when I was still in college? Where would I be now? Had I missed the path of stardom, or at least distinction, because I didn't have the discipline?

It turns out that all of my practicing still didn't make me concertmaster. But I did learn a little about potential. How ironic that when I finally had the self-confidence and drive to pursue greatness, I was stymied by my lack of those very qualities in the past. I can only go forward now. I can't practice 3 hours a day and still maintain a relationship with my husband and daughter, but I can try to maintain some continuity in my practice, retaining those gems of wisdom that I wrested from the walls of my mind. If further opportunities arise, I can step forward and pursue them with confidence.

Rachmaninoff rights

This afternoon the orchestra played a "run-out" in a tiny burg north of Indy. It was one of those concerts they tack onto a week when some far-flung rich person gives the orchestra money. We had already played this heavy program three times, so it was disheartening to see the small venue with half an audience. Why drag us up here to play for nobody in a high school auditorium, when we really wanted to rest our arms and brains? (I shouldn't complain--I'm on vacation for a week now!)
Anyway, it became clear within minutes of starting the concert that an audience member seated close to the stage had some kind of oxygen apparatus that made a sharp hissing noise every few seconds. It almost sounded like a cymbal swipe. My initial reaction was annoyance: this person should be asked to leave, or at least sit further away from the stage. As musicians, we often discuss the rudeness of noisy audiences (and uninformed audiences who applaud enthusiastically and inappropriately between movements). How dare they disturb the mood with their tubercular coughs and cell phones and hearing aid whistles and conversation and rustling programs! After about 15 minutes of allowing myself to be distracted by the whoosh of this unfortunate individual's machinery, I realized that I was practicing discrimination of some kind. How would I feel if my daughter were told she couldn't remain at a concert because of her disability? Why do I think that we are so special that we can command complete silence at the discomfort of our audience? Isn't music for the audience? At the same time, isn't the audience entitled to enough quiet to be able to listen without distraction? With all this running through my mind, I'm glad I didn't make a wrong entrance. Fortunately I have enough experience to be able to play large swathes of music while daydreaming. However, the question remains--whose rights are most important? In this particular situation, I decided that this oxygen-toting invalid came to the concert to experience something outside xemself, and that I should be able to put that sound into the background of my mind, just as xe has to all day every day. After a while I stopped really noticing the sound, an concentrated on doing my job, which is making good music, not making bad judgments.

DiLululemma

My husband has an old friend, from high school days, who is passionate about comics to the point that his old apartment was stacked top to bottom, including in the oven, with comics. When I first met this fellow, he and my husband discussed "Little Lulu" at great length. Having only recently been introduced to the world of comics, I just stood by silently while all these unfamiliar names and inside jokes went flying. But I did gather from the conversation that there was one item missing from his collection for which he'd give his eyeteeth: Little Lulu volume one, a set of three hardbound books in a sheath. There were several volumes which had come out in reverse order, and the interest in them at the time was so poor that they printed fewer and fewer of each succeeding volume, so that by the time volume one was published, they only put out about 1000 of them. This means that now this volume is extremely rare. When it shows up on eBay, it usually sells for about $700.

Last month my husband found this volume in a local comics shop for $125. Obviously these people had not done their research! He came rushing home, asking me what I thought we should do. For both of us our first reaction was to buy the books and let the friend buy it from us at cost. The friend was called, and I went, armed with a credit card, to acquire this mysterious item.

Later, we both felt some remorse. We could really use the money if we sold it on eBay. My husband even said that he'd be happy to keep the volume himself, as he is also quite the collector. We agonized over ways that we could retract the offer to the friend while maintaining our morality. No solution revealed itself to us, and we grudgingly followed through. The friend was pretty happy.

It is sometimes hard to be good and painful to do the right thing.
Any thoughts from my readers on what you would have done?

FlyLady testimonial

I recently sent the following letter to FlyLady, the woman who started the internet group that has helped me get organized.

Dear FlyLady--
I'm finally writing my testimonial after thinking about it awhile. I joined a little more than a year ago after a friend mentioned you. Before I met my husband my house was never really spotless, but I could get it cleaned up when I needed to. I grew up moving around a lot, so I never collected a lot of clutter--I knew I'd have to carry those boxes of junk from place to place! When I met and married my husband (within seven weeks!) everything changed. He's a collector of books, records, videos, comics, newspapers, etc. and hates to throw away anything. My little house filled up to the brim with boxes and piles of books and papers and the accompanying dust bunnies. We added two dogs to the mix, multiplying the hair of my two cats! Then we had a baby! Our little house was filled with stuff and dirt and baby accessories. We had to carve a path through the house to get anywhere.

My daughter has some developmental disabilities- she has difficulty with eating, sleeping, motor skills, and she is severely autistic. This made our lives even more filled with chaos and CHAOS! At one point I realized that I am the Mommy, and I should start acting like one. This meant taking responsibility and providing a safe and orderly home for my curious little monkey.
When I joined, I had a feeling of panic about my house--how this wasn't how I had wanted to live and that things would never get any better. Your words of reassurance that it's okay not to be perfect, to take babysteps, and that blessings done imperfectly still are blessings really helped me get started. I couldn't do much of the regular routine stuff for a long time. I struggled with doing the dishes and shining the sink, and still do, but less time passes between washings now. I spent the first several months just slowly decluttering. I began to realize that my husband wasn't the only one contributing to the clutter! I've given countless bags of MY stuff to the local charities. I feel like everything I give away or throw away is weight lifted from my heart.

A few months ago, I realized that it was time to take the next step and actually start doing the weekly home blessings. I've been amazed at the difference. Every week it seems like less work! The dust isn't hard to clean up if it's only been there for a week!

My bathroom was a wreck--the wall behind the tub faucets was rotting away and moldy. Last summer I had the tile taken off, the wall fixed, and the tile replaced. It looked beautiful! I wanted it to stay that way, so after every shower I dry it with a towel, and I haven't had to clean it since! One of my daughter's therapists asked me how I keep my tiles so clean! I was stunned--someone asked ME how I keep something clean??? This was a new experience.

I felt so much more comfortable about my house that I invited my inlaws here for Thanksgiving. I planned and cleaned and prepared my new dining room (which had recently been a storage area/porch/breezeway) with curtains I ACTUALLY MADE, without panic! My guests raved about the pretty room and the delicious food.

I had resisted your insistence on wearing a good pair of tie-up shoes, but finally decided to try it. I found a pair of great shoes that are so comfy they feel like socks! Now when I wear other shoes I can't stand the discomfort! I have also been glad they are on when I need to step outside or go down into my still dirty basement. The other day your shoe rule was proven to be right. When I was dusting a picture on the wall, it came off of its poorly installed hook, and smashed to the floor, breaking the glass right at my feet. If I had been barefoot, I would likely have been hurt pretty badly. As it was, I was able to quickly clear up the mess before anyone else got injured! Thanks for insisting on the shoes!!!

My DD is now almost 3, and we have accepted her diagnosis and are living with more peace in terms of dealing with daily care issues, though we have the obligatory emergencies that all parents deal with. I feel as if you've taught me so much about being a grown up (at the age of 35!) and loving myself and my family by getting out of the dirty rut.

Oh--I almost forgot! My husband has even started doing some of his own decluttering! It really is better to live by example than to complain and nag.

I'm sorry this is so long-winded, but I had so many purple puddles to share! Thank you FlyLady!!!!
Finally Fluttering In Indy

Big girl!!!

Our little girl became a big girl tonight. We put her into her crib, and she proceeded to swing her leg over the side to climb out. We had been dreading this harbinger of the end of the crib. We knew it was coming, as the crib rail is rapidly approaching her belly button, and had talked about trying to make the transition in December when I'll be home most mornings. Well, tonight's leg swing put the gas pedal on the whole process. We put her back in the crib,turned off the light, and watched as she lifted the other leg over the side!

The light went back on as we rearranged her room and she wandered the house. The crib was too wide to roll out of her room, so we shoved it against the closet door. The mattress went onto the floor in the corner where the crib had been, in a vain attempt to pretend that everything is really still the same as it was the day we brought her home from the hospital. Grace immediately saw through our ruse, and spent the next 45 minutes wandering around the room, knocking things over, making vaguely complaining noises. She also employed her recently acquired skill of turning the doorknob to open the door. (It makes sense that she would figure out both how to escape the crib and how to escape her room in one week. No flies on her.) Fortunately for us all, Daddy had the foresight to place one of those baby security thingies on her doorknob, so she couldn't turn it. This did not forestall her continued attempts to do so.

The whole time, hubby and I are sitting in the living room, feeling extreme anxiety about how disastrous the night will be, fielding calls from his mom, planning to get the playyard out if she's still roving at 11 PM. Should we check on her? Should we just sit here gnawing our knuckles?

At 10:15 or so, we noticed that she was no longer making any noise, and we looked at each other in amazement. Was it possible that she actually went to sleep within a reasonable period of time? This from our daughter?? We were then gripped with fear--what if she had fallen asleep in front of the door? We let the silence continue for another 15 minutes, then snuck to the door, gently turning the knob and peering into the night-lit gloom. There she lay, on her bed.

We were stunned and delighted, and returned to the living room to dance and laugh and hug, celebrating our daughter's leap out of babyhood.

Vile temptor

My husband has often bemoaned the fact that the he of now doesn't care enough about the him of fifteen minutes from now. This has been a lot on my mind lately. What is it about the human condition that leads us to fall into temptation, even when we are fully aware of the likely outcome of our indulgences? I know that if I eat sugar I will suffer greatly from depression, anger and listlessness. These outcomes are great enough of a deterrent that I have not intentionally eaten sugar in many months. I also know that if I rob a bank, I will go to jail and destroy my life and my family's. So far I have not felt tempted to pursue that course of action, though it might theoretically solve some of our financial problems. But not bothering to do the dishes every night after dinner, though I know it will become a formidable pile the next day--why can't I resist the temptation of laziness? The salty snacks that call my name and give me digestive ills and fat; the television shows I don't really need to watch when there is housework to be done; not practicing so that I show up at work unable to bumble my way through a Shostakovich symphony. Basically it boils down to being a grownup. Being able to make the right choice all the time is an impossible goal, but I know I can do better than I do.

My daughter's diaper is olfactorily noticeable--the consequence of my not taking care of it immediately is her discomfort--so that's all for now.

Not your mother's grandmother

My 80-year-old grandmother has recently been elected mayor of her small city. She decided to run against the entrenched Democratic government on a zany Socialist-Republican platform, and she won! My grandmother is not your typical grandmother, sitting and knitting and baking while letting the rest of the world go by. Well, she does bake some amazing apple and pumpkin pies, but she makes sure she has plenty of fingers in other kinds of pies as well! My grandmother has always been outspoken, strong-willed, and ready to do the dirty work. I spent much of my growing up in her house, and she was always doing something--upholstery, running a business, wallpapering, shepherding my youth orchestra, mixing epoxy on the kitchen counter! Her mother was of similar ilk--one of the first women in this country to attend college, a Latin scholar, a school teacher in the Bronx, a strong woman who lived well into her nineties. The women in my family have followed her pioneering path of intellectual pursuit, fierce independence, and not sitting around waiting for someone else to do the job. And telling people what we think!! Now my grandmother can put these strengths to use for the good of her town. Way to go Grandmom!!!!

Abject Terror

Our family also includes two dogs and a cat, who are constant sources of entertainment and amusement. Susie, the cat, is most noted for her penchant for not moving for 16 hours at a stretch. Tripsy, the older dog, is likely to continue to be a puppy into old age, energy-wise. Trellis, the younger, though first adopted, dog is very sweet but often described by me as "dumb as rocks". She proved this to be true the other day in a way that still makes me burst out laughing when I remember. I had placed a bowl of potato chips on the arm of the sofa, then went to attend to something on the computer. Hubby was sitting on the sofa with Trellis, who began quaking and shaking, staring at me as though I was a monster! I went to try andf soothe her, trying to figure out what had scared her so badly. We finally discovered that she was terrified of the chips. What a dog!!!!!! I'm so glad she's here to scare off intruders!

Grace

Another series of thoughts came out of my radio show adventure. I've been reading a lot on the internet lately about autism from the perspective of autistic adults. Many of these autistic adults feel very much that their rights are often ignored or dismissed, and some have horror stories of growing up in institutions being restrained and drugged. It has made me think hard about my daughter, and how I want her to always feel loved and respected, and happy. I think she is happy, and I know that she is loved, but I want her to feel loved and respected. I have also read a little about adult autistics who feel that their parents did things the right way, and I'm trying to apply those ideas to raising my daughter. A key element in these success stories is the acceptance of the child as autistic--not trying to "cure" or hide the autism with behavioral boot camp.

After Saturday's radio show, I was buttonholed by someone I know as an acquaintance. She said, "You have a child, don't you?" I responded in the affirmative, and mentioned her age and that she's autistic. She said, with her head dropped to the side, something like, "Oh, I'm so sorry, how tragic. My relative has an autistic child..blah blah blah.. wears you down blah..."

I felt somehow repelled by her response, and thinking about it later, I realized that I don't think of my daughter's autism as tragic. I used to feel like Job, back when her feeding problems became life-threatening, and I had a difficult time dealing with the initial diagnosis of autism a year or so ago. Back then, I might have agreed with her that it was a tragedy. But I don't now. Now I'm proud of my daughter, and hope that she'll be able to reach her potential.

I was surprised to discover this acceptance in myself, and realized that with the acceptance has come a sense of peace that has eluded me for a long time. This doesn't mean I escape frustration dealing with the everyday and long term challenges of raising an autistic person, but it does mean I wouldn't trade it for a"normal" child.

Great Expectations

In a post several weeks ago I mentioned my upcoming attendance at Michael Feldman's "Whad'YaKnow?" in town here in Indy. I went to the show last Saturday, and was fairly disappointed. I found myself feeling depressed during the show, and tried to analyze these seemingly inappropriate emotions. Then, with shame, I realized that I had not merely hoped to be on the quiz, but I had actually expected it! When it became clear that I would not have my moment in the sun, I suddenly lost most of my interest in the show. Also because the local band they highlighted, Reverend Peyton's Big Damn Band, really sucked. I also felt annoyed by the people who were actually chosen to speak on air--they mostly seemed like attention-seeking idiots--unlike myself, of course!

I learned a little about myself in this episode of my life. When I build up my expectations to an insupportable height, I'm going to be disappointed. Also I can be pretty damn immature! Or should I say "big damn" immature?

Brainteasing

I'm finally able to spend a few moments sitting at the computer after a difficult week, both schedule-wise and emotionally.

Having (at least for the present) stopped using respite care, my husband and I are trying to find ways to incorporate more time alone into our days. This means "dates" at home after Grace goes to bed. (Notice I didn't say sleep--these days it's at least an hour or so before she quiets down in there.) Often times we end up watching NYPD Blue or some other show, but this doesn't give us the interaction we need to sustain our marriage. I have read somewhere that marriages with autistic children have very high divorce rates, and we don't want to go anywere near that, so it's very important for us to continue working on our relationship. Grace's situation is a challenge for us, but it makes it easier if we are a team, supporting each other.

So what's a tired couple to do on an at-home date? My husband, ever scouring the local antique shops and used book stores, stumbled across a large number of bound volumes of the childrens' magazine St. Nicholas from the teens and 20's of last century. This magazine includes some serialized novels, poetry, drawings, news items, and various word puzzles that would put Will Shortz to shame! We've been busting our brains trying to work out puzzles that were actually written by preteen children. And we're no dummies, believe me. These puzzles and the articles in this magazine indicate to me that children back then just had better thinking skills, and also didn't spend much time watching mind-numbing television. Those were better times.

Unless, of course, you think of the lack of civil rights, World War I, and the 1918 flu.

Who, me?

Last night I stayed up way too late exploring oddizm, and had a few revelations about myself. Firstly, that I was thick for taking so long to get the pun of the website's name. Secondly, a number of experiences in my past became more clearly "autistic". Since my daughter's diagnosis, my husband and I have been playing the game of pointing out each other's autistic behaviors and sensory problems. I had always been smugly thinking to myself that he was really much more autistic than I was. He may still be, though neither of us has a diagnosis, but I am much more autistic than I had realized.

The first symptom I recognized in myself was auditory sensitivity. I had always believed that I was sensitive to loud noise because I was a musician. When a group of my colleagues are on the street when a fire truck passes with its siren blasting, we always cover our ears, while the general public barely seems to notice. I also have a terrible time understanding people's speech when there is any kind of background noise, and do a lot of lipreading.

Which leads to my next symptom--I have always felt uncomfortable looking at people's eyes. I've always looked at their mouths when they are talking. I feel as though looking into someone's eyes is like really looking into them, and that they can see into me, which feels overwhelming. I had attributed this to my insecurities, but now I wonder.

Last night, reading the jokes on oddizm--You Might Be An Aspie If...--and I realized that I was laughing an awful lot, and that actually a lot of those things sounded like me, and some memories were brought to mind. I remember being a freshman in high school, having found a great group of friends, all overintelligent misfits who hung out in the gifted counselor's office in the library. I was well known among this group for being gullible. One day one of the group told me that gullible was actually not in the dictionary, and I got the dictionary out to prove them wrong. I used to tell this story later on as a funny anecdote, but now I wonder if my literalism is more than that.

This weekend at the symphony we're playing an Oktoberfest pops program, complete with a group that yodels and plays alpenhorns. For one piece they encourage the audience to link arms and sway, and I've been swaying, too, to get into the spirit of things. I realized that the swaying actually feels good--comforting somehow. Maybe I'll start stimming intentionally.

I doubt I could be diagnosed as having Aspergers, but these things (and others) confirm my belief in the spectrum--that even those who don't fall on the spectrum really do in some way or another. That we are not really so different from one another.

Not okay

Today we tried a new respite care provider who actually is available during the day.
For the uninitiated, respite care is a service where grant money is given for families of children with disabilities, for the purpose of giving respite. The provider can be used to watch and care for the child while her parents go out for a date or errands, or just do work at home. The general idea behind it is that these families are in need of a break, and usually are unable to find suitable babysitters, and often don't have enough money to pay for one anyway.
We have more of the former problem, as our daughter, who is autistic, also has feeding problems. When she was an infant, we struggled every day to get her to drink more than 2 ounces of formula or breast milk at a time. In fact, I was unable to provide much milk myself, likely because of the weakness of her sucking. As a result, she also slept very little, and was quite fussy. When she was just over one year old, she was at the 3rd percentile for weight, at about 17 pounds. She became sick with a cold, which developed into an ear infection, and she refused to take any food or drink. She dropped down to just under 16 pounds, and we put her into the hospital. She regained strength and a little weight, but they recommended that we put in a g-tube: a tube directly through her skin into her stomach. We were horrified at the idea of our baby having surgery, and declined, so they taught us how to insert an NG tube through her nose and down to her stomach, which we could do whenever she didn't take in enough by mouth.
We got home from the hospital, hopeful that everything would be fine. It soon became clear that the NG tube would be much more damaging to all three of us emotionally, as it was needed every day, and she screamed and writhed throughout the insertion and feeding, vomiting afterwards. Four days after coming home, we took her back to the hospital, so that they could give her the g-tube.
We clung to each other, crying, as they took her from us, limp from the anesthesia, so they could put that hole in her belly.
A year and a half later, she is at about 32 pounds and 38 inches tall, 75th percentile for weight and for height.
They did numerous tests at the hospital, some of which were pretty awful. What was determined was that she had acid reflux, which could be helped with Zantac; that she aspirated very thin liquids, which means that she was sometimes taking what she was drinking into her lungs; that she had oromotor dysfunction, meaning she had trouble safely moving food around in her mouth, causing her to gag; that she had dysphagia, which means difficulty swallowing. So, in a nutshell, eating for her was a minefield of unpleasant experiences which usually led to projectile vomiting. No wonder she didn't want to eat!
Months later, we also figured out that she is autistic, which means that some food textures, temperatures and tastes are intolerable because of her sensory integration problems.
What this means is that anyone who takes care of Grace has to be able to at least be able to work with the g-tube, and hopefully feel comfortable counting the calories of the limited foods she actually takes in by mouth, and then be able to calculate the calories needed by the tube. This means Courtney B. Teen down the street is not a viable candidate for babysitter.
We have interviewed and used several providers from a local service, who are all certified in CPR, etc., and who have a variety of backgrounds in disability work. Some of these people have degrees in psychology, social work, education. They are mostly employed during the day at regular jobs, and make themselves available for respite care evenings and weekends. We discovered the one that came today, and were delighted that she was available during some days, as that is a time more helpful to us.
I arrived home early from my concert (hubby went to a book sale in Bloomington), and found Grace strapped into her stroller in front of Sesame Street. We use her stroller as a sort of mobile high chair--we can prevent her from meandering too much while her feeding tube is in use, and thereby reduce the chances of the tube being yanked out. However, we do not use the stroller as a restraining device in her own living room when she is not being fed. The provider said that she had been concerned for Grace's safety. Grace has been seeking sensory input with her feet by kicking at the TiVo and other video equipment under the TV, and she has been able to dislodge the shelf and knock this equipment off a number of times (without injury). We are not happy with this treatment of property, but we believe she is more important than our TiVo. When a spill occurs, she is gently moved away and scolded. We want her to get her sensory input, and we want her to be safe, so we are going to get a new entertainment center with the shelves up high, and experiment with activities that give her the input. We are NOT EVER going to restrain her to prevent sensory activities. I know this woman thought she was acting in Grace's best interest, but we are both really upset by what happened. Fortunately it was a relatively brief time of restraint--about half an hour--and Grace seems to be unaffected. We, however, are having second thoughts about ever leaving her in the care of someone who does the work for pay. What other things might happen while we are gadding about? It brings to mind the rape and subsequent pregnancy of a local quadraplegic woman by her home health aide. I'm terrified for my daughter and her future.

Not Much, You?

One summer Saturday after I graduated from college, I went through the boxes of papers under my bed, separating the wheat from the chaff. My intent was to prepare myself for the eventual move to adulthood and independence, and I knew I wanted to move as few boxes as possible when I found my first apartment. My first apartment ended up being just up the stairs in the third floor maids' quarters of my grandparents' colossal victorian house, but eventually I did need to carry the boxes a little bit further! That afternoon I had the radio on WHYY, the Philly NPR station, and listened for the first time to "Whad'Ya Know?", Michael Feldman's sarcastic and quirky quiz show. I was at first somewhat shocked by his disregard for courtesy, when my hitherto very innocent mind began to understand that he was being funny. I had led a fairly sheltered life, spending my teen years either practicing, going to church, doing homework or yelling at my younger sister (listed by percentage of time spent, though I'm not sure whether from most to least or vice versa!). At college I surrounded myself with other young women of similar ilk: religious, musical, scholarly and very earnest. I have since discovered that my college experience was not typical. Most people in their late teens and early twenties have not been preparing for their careers since the age of 7, and are using their first years away from home to experiment widely with their bodies and minds. I used mine to pine away over various earnest young men and become even more serious about music.
Anyway, my serious and earnest self suddenly discovered a show that was neither, and since then I have been a fan. Not devoted to the point of taping the show every week off the radio, but I did feel sad when I discovered the station in Indianapolis did not carry it. Fortunately, they came to their senses a few years ago, and though they don't air it live, they do air it now. I have become fairly busy with motherhood, but if I find myself stuck in the car with a sleeping little girl on Saturday afternoons, I get rewarded for my sacrifice by Michael Feldman.
Now imagine how my heart started to pump faster yesterday afternoon when I heard his reedy voice announce on the radio that he would be in Indy next month, merely weeks away, doing a live broadcast, and that if I wanted to go, I only needed to buy a ticket!! My pulse rushed, as I called my husband. I wanted him to bring up the information on the computer so I could call them when I got home after my rehearsal. He's what they call a sweetie, and called them himself, despite being phonophobic, and bought me a FRONT ROW ticket!!!!!
Now there's that tricky problem of getting out of that morning's rehearsal......

Restaurant Overload

My daughter went to a restaurant yesterday evening. This may not mean much to most people, but it was very important for us. The last several times my daughter has been in a restaurant, it has led to a meltdown. She would gradually become more and more agitated, looking around wildly, reaching out to everyone, asking to be held, asking to be put down, moaning and humming, until one of us would leave dinner and put her in her car seat, where she would calm down immediately, and even fall asleep.
We don't know what it is exactly that bothers her so much, but we spend significant time trying to understand. Is it the lighting? Music? People? Conversation? Smells? Her own state of tiredness or hunger or pain? Is it just change? We don't want to subject her to what amounts to sensory torture, but we also feel like helping her to avoid any and all unpleasant experiences does not help her to learn to function in the non-autistic world.
Last night at the restaurant, she was not terribly happy, but she never got anywhere near meldown. My mom-in-law and I took turns giving her tours of the room every so often, and tried to distract her with table napkin peekaboo. We were able to finish our dinners, and the level of stress was fairly low.
What was the magic ingredient? Was she feeling better? It was pretty noisy, near the kitchen, so it can't have been the sound. If only she could tell us, we would do everything in our power to make her comfortable. We'll just keep trying to include her in family outings, and see if we can solve the mystery without damaging her.

The Mrs.

Upon request, I am including more photos of my lovely daughter, including the one below that is from her first year or so. It shows the difference in her outlook. The white hat above is actually the dogs' water bowl, which she loves to empty out. She appears to have better fashion sense than either of her parents!

Vessel

Tonight's performance by our guest pianist was exquisite--his first encore almost brought me to tears. Music has the power to manipulate emotions, but it is so rare to have such an experience as the one created tonight. Too often musicians become mere technicians, looking for perfection instead of transport. When a musician is able to subjugate his/her ego to the composer and to the muse, magic takes place--the music flows through the instrument, pulling the listeners out of themselves, into that abstract world of texture, color, emotion, structure.
This ideal of making oneself a servant to the music brings to mind the teachings of Jesus, once so central to my life. The idea of giving up what one desires for the service of God parallels the idea of making music to serve the music itself, and not for one's own glory, or even for the very real pleasure that can be gotten from achieving technical clarity. I have often noticed in my own practicing and in teaching that a difficult passage becomes much easier when you approach the difficulty from a musical perspective rather than technical. The music carries the technique.
Leadership also falls under this philosophy. When leaders seek to lead in order to bring themselves more power instead of to lift up those that follow, disaster and greed and cruelty are the inevitable results. (One needs only to observe the current administration to validate this. Bush's desire to make himself look good, with what seems to be little regard for the people who are suffering, results in failed policy. Not that Republicans are the only power-hungry politicians out there. I guess we'll be unlikely to see Jimmy Stewart's Mr. Smith in Washington any time soon.) In a musical group, egos can easily get in the way, and having "my way" becomes more important than what is better for the group, which leads to discord.