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
Tuesday, November 29, 2005
Sunday, November 20, 2005
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.
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.
Saturday, November 12, 2005
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!!!!
Monday, October 24, 2005
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!
Sunday, October 23, 2005
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?
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?
Sunday, October 09, 2005
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.
Sunday, October 02, 2005
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.
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.
Friday, September 30, 2005
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.
Thursday, September 29, 2005
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......
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......
Monday, September 26, 2005
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.
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.
Sunday, September 25, 2005
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.
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.
Saturday, September 24, 2005
Connected
I've been thinking lately about oral history. Our power went out one night recently after a storm, and we were left in the relative dark with no computer (gasp!) and no TV(horrors!). Hubby and I sat in the living room, at a loss without our electronics. I thought about the times before electricity, and what people did then to entertain themselves, if they had time for such frivolity after working themselves to the bone. They probably sang and played music for themselves or told stories about the past and present. The stories told held importance, were the means of teaching the lessons of life. The words reminded people of the events of their own history and their elders'. There was a sense of continuity and connection with the past.
Our culture now seems to pride itself on independence from the past, independence from others. We live separately, in our cubicles, bathed in LED light, connected by electricity instead of by humanity. This separation protects us from the pain of the past, but also condemns us to suffer the pain of the present and future without help from our neighbors and family. Community and history are connected.
History provides perspective, as well. Looking at events in context makes difficulty easier to bear. This is not to dismiss the pain of life, but to acknowledge that pain is not the only ingredient of life.
Pain has an evolutionary purpose, in some cases--to protect us from repeating injurious behaviors. For example, the pain of New Orleans' refugees should teach us something, many things, about the inequity in our society, the wisdom of putting ourselves in danger's path, the power of fear. The pain in my life teaches me to hold on, because pain dulls and recedes, and is interrupted by pleasure, contentment. Pain can cause us to become angry, which can lead to either self-destructive behavior or attempts to improve the situation.
Understanding the pain of others close to us, pain presented as part of a story, pain in the news can only lead to more community. Actually doing something to alleviate another's pain, tearing down the walls of our cubicles, using technology to unite with far-flung members of the autistic world, will help us feel connected, in the human sense, not electronically.
Today marks the 4th anniversary of my having met my beloved husband on the internet! We spent some time today reminiscing about that day, and what we did and felt before our chance encounter. I remember the pain of loneliness I felt that morning as I dragged myself out of bed to go pick up an elderly friend for church. When I arrived at her house, she yelled out the door that she had a family situation and wouldn't be going after all. I bawled on the way to church, for some reason feeling rejected and useless, as I often felt in those days, indeed for most of my life.
As I sat in the congregation, surrounded by families and older couples, I struggled not to cry as I felt how truly isolated I was. True, I had a job I loved, and after years of therapy, an understanding of how I had come to be who I was, and the ability to accept myself, but what I did not have was a soul mate, and that was what I craved.
That afternoon I puttered around the house trying to regain my sense of purpose, logging onto my matchmaking service to troll for potential mates. It seemed that they were all shallow or uninterested or Republican. Then, there he was--the man who barely described himself at all, but who said he thought intelligence was sexy. I tossed off an inquiring email, and the rest is history.
In the four years since then, my sweetie and I have been through more than the average bear, including marriage, miscarriage, family strife, and a difficult pregnancy, followed by the discovery that our daughter would be a little more intensive work than we had expected. There are times of great frustration and sorrow, but when I look at the balance sheet, I see the preponderance of joy and delight that I have as a wife and mother.
Friday, September 23, 2005
Imagined History
Today on the street I saw a man in a business suit holding a teddy bear under his left arm and a hard hat in his left hand while dialing his cell phone with his right. It struck me as an odd collection of accoutrements, and I wondered what circumstances could lead to his appearance there at the corner of Washington and Meridian.
Here are some ideas:
He's an architect of the new 5-star hotel going up nearby, having recently purchased the bear as a gift for his young daughter who hasn't seen him much in the months since the tower started going up, and is frantically calling his ex-wife to reschedule the time to pick up said daughter for her birthday dinner, as something has come up to make him late: his girlfriend has threatened him with a Bobbitting if he doesn't get his butt over right now to yell at the kitchen contractor.
Or he's going to the much-ballyhooed Village People With Teddy Bears (VPWTB) convention.
Or he' got a bomb in there and is calling his mom to say goodbye in case the hard hat doesn't protect him as he runs away from the FAO Schwartz display.
Now you know what goes on in my head!
Here are some ideas:
He's an architect of the new 5-star hotel going up nearby, having recently purchased the bear as a gift for his young daughter who hasn't seen him much in the months since the tower started going up, and is frantically calling his ex-wife to reschedule the time to pick up said daughter for her birthday dinner, as something has come up to make him late: his girlfriend has threatened him with a Bobbitting if he doesn't get his butt over right now to yell at the kitchen contractor.
Or he's going to the much-ballyhooed Village People With Teddy Bears (VPWTB) convention.
Or he' got a bomb in there and is calling his mom to say goodbye in case the hard hat doesn't protect him as he runs away from the FAO Schwartz display.
Now you know what goes on in my head!
Another beginning
I had a blog started about 15 months ago, but got distracted. My husband has been pestering me to get started again, and I do occasionally have things to write about, so here goes again.
I intend to use this page to rant about minutiae, brag about my wonderful autistic daughter, and try to get perspective on the world I find myself in.
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