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.

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.

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!

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.