31 October 2011

Julia was supposed to begin the big consequence of being sent home from school if she picked at her skin 6 times today. The protocol is pick or scratch, then redirect. If she is redirected, she is praised. If she refuses redirection, she gets a mark. Six marks and she is sent home. I waited all morning for the phone call. I expected that she would make it until about 10, and when the call didn’t come, I was amazed. And quite excited that Julia may have managed to control herself so well so as to stay in school the entire day. Well, as it turned out, some of the school team members had questions and they decided to postpone for another day. Julia climbed off the bus so proud of her self for staying in school the entire day. I guess we try again tomorrow. She was nervous last night and this morning, and now, we just have to hold on to first day terrors for another day.

I have been remembering last year today because it was such an awful day. I am not completely whole and back to myself, but I am not where I was last year. Thanks goodness for Amy’s available green dinosaur costume last Halloween. Thank goodness that Julia did not want something more individual and did not care about pumpkins. Did we carve one last year? I am at the point where I can look back, further back. Halloween two years ago was so normal, so much like so many other Halloweens from Cheshire’s youth or Julia’s few years at home. Julia was Stella Luna, the bat, and it was cold in Wisconsin. We put on winter coats and we walked around. I can put myself back there. I can feel what it felt like to be so normal. To be three of us. To be just a family as we were. I am still not completely comfortable being the family that we are. For me, there is still something missing. I think it may be that David enjoyed walking the trick or treat route with the girls much more than I did, and now, doing it alone, do it at all, is so lonely. So much not right. I don’t mean that a family must have two parents to be complete. Certainly, if I decided to adopt a child as a single mother, the configuration of our family would be complete. But that was not the configuration, not the plan. And some activities, like trick or treating, make that so apparent to me.

I wonder if being able to look back without the blinding pain of last year is what moving forward is about. I am doing so much for myself right now. I have been doing much for myself since David died but it feels like it has finally taken root. Small things like time for meditation and exercise, selfish things like taking time each day to write, bigger things like the house renovations, self contained projects like complete days devoted to getting ready for halloween or packing up boxes of the kitchen and rearranging pictures for the walls. Is this filling of a day, a week, or a month, is this filling completely and without regard for the opinion of another what life for myself and to an extent by myself will be. I don't want to live alone for the rest of my life but this singular life that I am living, this life to please myself, will this life allow entry to anyone else. Will I grow so selfish, so self-pleasing that I will not recognize the kindred spirit who steps into my path. Will I become like Julia when she does not notice that someone is interested in being her friend?

But these are all silly questions. I have been doing what I must to survive. I have been surviving since I lost David. I do not know of the days of mere survival are finished or whether this is a welcomed respite from the days of grieving. There is no well lit path through this tunnel and I am charged with believing that it has an end that I will come to.

I am only into this journey for two months. Already I wish to be finished. Already I wish to move on. Already I wish the resulting great changes and new life were clearly marked ahead. The deliberate life that I've sworn myself to live will not be easily won. And patience and ardor and perseverance need be my companions.

I wrote a few days ago when Julia wet my bed how I still lacked all resiliency. Two friends begged to contradict and upon re-reading, I see their point. Thank you and yes, I do have, I am growing some resilience. I know for sure that I will need it.

Still and again, I wish that I did not need this journey. I wonder if there will come a time when I embrace this path without the reservation of wishing otherwise. Maybe this is just another way of wondering if there will one day be joy again.

Last evening, we had dinner with our neighbor, Maria. While we were eating, Julia asked where Maria’s husband was. Maria said that she did not have a husband, and Julia followed up with asking whether her husband had died. Maria explained that she had never been married, and together we named people, including Cheshire, that have not been married. Later, at home, Julia asked me about Marcia, and I explained that Marcia’s husband had died when Matthew was a little boy. “Like my Daddy?” Julia asked. When I told her, yes, she asked if Marcia and Matthew were sad about their husband, something that she asks me often. The questions were not the most polite, but I was impressed by how she was putting her world together. And how she thought of Marcia who we don’t see as often as I would like. To some extent, Julia is learning how to generalize a bit. She is also asking questions beyond her immediate sphere of interest.

She loved going from house to house tonight, She loved knowing the rules of Halloween -- only go to houses with lights on. She would have enjoyed going out with another child. Next year, I have to make that happen. Julia did a pretty good job at staying upbeat and polite as she went from door to door. At most places she did not stay longer than was appropriate and did not ask or say many inappropriate things. She did tell a few people to keep their noisy, scary dogs away from her, and she did try and talk to almost everyone who handed out candy. Learning the Halloween protocol, learning any social protocol, is not easy for Julia. She worked on it hard this year. She took my suggestions and practiced.

And she was the best purple, ballerina dinosaur that there ever has been!

And a kitchen note. I posted a few photos of the green walls of the kitchen which was what it looked like as of last Friday. Today, Ed started handing cabinets and building my little wine rack. The sink and the faucet arrived and I went shopping for drawer pulls. Tomorrow, I have to find glass for two of my doors.

The fierce and hungry purple ballerina dinosaur ventures forth to the great, dark candy feeding fields that is also known as the Bay Creek neighborhood of Madison, Wisconsin. A fleece costume is pretty handy on a chilly night. Mama dinosaur resorted to her winter jacket. And thanks to one of my neighbors, Julia stopped into their house to hang out with a bunch of kids while I enjoyed a beer and a front yard fire.

29 October 2011

Julia had such a hard morning yesterday. She was beside herself trying not to scratch the scabs on her right arm. She did a lot of self loathing talk. She wanted to hurt her arm to get rid of the feelings. She was ever so persnickety and uncooperative and just plain grumpy. She did not want to be distracted from her discomfort and she wanted to make everyone around her as miserable as she was. And the everyone included a new therapist who was being introduced to her with Comella, our senior therapist, overseeing the session.

I was inpatient for her to settle down because I had the bed to strip, bedding to wash, and our make shift kitchen to cover in plastic for Ed’s last day of sanding. The house was dusty, irregardless of the layers of plastic that Ed and I have laid down and tacked up. And I had only had a few hours of sleep and was sporting an intense headache.

This was not a good way to start the day.

But the arm that was bothering Julia so much was here right, her drawing hand, her coloring hand. How could such a talented and lovely hand/arm be abandoned? I held her for awhile and told her so. I finally insisted that she and the therapists take the dog for a walk, getting her out of the house. She protested -- such a throwback to her behavior a few years ago but finally went out and walked. She calmed down by the time they got back. I had the bedding in the washer and the plastic pinned and covering by that time as well.

If what I’ve/we’ve been trying to do is to bring Julia’s awareness to the specific discomfort of her sores and scabs, we succeeded yesterday. Maybe it was very necessary for her to feel such discomfort, but not the general discomfort, be it physical or otherwise, that has so often plagued her. Discomfort specific to its type and location. And that what she experienced yesterday. Not necessarily fun to live through, but possibly necessary to fully experience. She is getting better about complaining about the itch instead of losing herself in scratching.

But not time to send up fireworks. I am still using plenty of bandaids and wraps every day, and we still are set on the school consequences starting on Monday.

I too needed some transformation yesterday. The morning headache only resolved when I took a short nap during the time our second therapist was working with Julia. And I got up from that nap, finished the wash, and went to the Y to work out for a little while before our evening started. My mood was adjusted.

Julia and I went to dinner at Mary and Robert’s house. Mary and I made dinner -- oh, what a treat! Dinner was fresh, nothing had been preserved or frozen or cooked in great batches. And it was delicious. Food for the body and soul. It is striking that I can travel for three weeks and really not miss my kitchen at all, but here at home, I expect to use it. And it is not the complicated meals that I miss, but scrambled eggs, baked salmon, and sauteed string beans.

My feeling of deprivation is so elitist. I probably have a better kitchen right now, with my toaster over, microwave, electric tea pot and rice maker, plus frig, than most of the world’s population. My internal complaints about washing dishes in the bathroom sink or needing to go out my front door and around to the side door to get to my laundry don’t taken into account that the water is clean and delivered inside the house. And above all, the circumstances are temporary, of my own choosing, and the preamble to an improved work and living space.

And towards that end, Ed finished the sanding and cleaning up. He primed and first coated the ceiling and walls, and brought one cabinet into the kitchen for me to look at the colors together. And I really like it. No pop or zing. This is going to be a pretty mellow space and I like it.

So, Julia and I ended the day with dinner with our dear ones, and coming home to less plastic and a yellow cabinet in the green kitchen. And a blessed long sleep in my wonderful bed.

28 October 2011

The uncertainty is ever present. I finished writing for the evening, watched an episode of an old British mini-series, Behaving Badly (1989) with Judi Dench, and yawning after this full day, turned out the light and turned over to go to sleep. Assuming that I could do so without interference or difficulty. But, as I snuggled down, I felt a bit of damp and then realized that Julia had peed in my bed.

And so, an hour later, she is tucked up in her own bed, peacefully sleeping. My bed is stripped and tomorrow I will have to wash not only sheets and mattress cover but the quilt and duvet cover that was soaked.

" . . . The question of self-pity." ~Joan Didion.

I am right there. Back against the wall.

What is this? Is there a why? Does it matter? Will anything ever resolve? I lay in Julia's single bed with her and conjure up all sorts of scary plot lines for the future.

I've written it before. I have no resilience.

And I cannot sleep now. It is too late. We have therapy at 8. I have a headache. And I cannot sleep in my bed. I laid with Julia for awhile and then gave up, got up, put on sweats, took some tylenol, planted myself in my favorite chair, and I am now hoping for the best. Sleep after this writing and a bit of reading, and praying fervently that this is a passing phase.

27 October 2011

And then there are days when the clouds part, the fog clears and there is a defined path visible. It may not be a long path, at least the visible part, but there is definitely something there.

Today, is one of those days.

Julia has today and tomorrow off. Fall break. Today is all about therapy. We were at the clinic at 11. Julia for therapy and me for my quarterly meeting with our team psychologist. Then, Marilyn at 1:30; back to clinic for more therapy at 3 until 6 when we go to 3 gaits for riding. Tomorrow is a wee bit slower.

It is good to be out of the house today. Ed is doing the second and, I hope, last sanding of the kitchen ceiling and walls. It took the second mudding a really long time to dry, but after almost 48 hours of running fans, it was ready to sand this morning. I covered as much as I could with plastic, made sure all the upstairs doors were closed tightly, Ed put up a plastic curtain between the kitchen and the rest of the house and he started his work. We slipped out of the house just as he started. His aim was to finish the sanding and clean up to be ready to begin painting tomorrow. He is expecting to work on cabinets next week. I’ve heard from the sink, faucet, and range hood people and those things have been shipped. With paint on the wall and a cabinet or two in, I should be able to choose my countertop.

Oh, to have a kitchen sink and a stove again! Realistically, 3-4 more weeks, but maybe 3.

And I’ve been noticing that Julia says, “Oh, man!!” when she gets frustrated. I had no idea where that came from. I don’t say it. I asked at school and no one there specifically says it. And I didn’t think it was part of any of our favorite movies or her latest fav tv show, Dinosaur King. I was on the phone yesterday with Mary, and she said it! In the same exact tone as Julia does. I laughed at her and explained. Now, she can’t wait to hear Julia say it. And I can’t wait to hear them both say it together!!

Now to the revelations.

In Wisconsin, the state will pay for intensive autism therapy for three years and then offers to pay a certain amount of money for non-intensive therapy. Julia’s third year of state supported therapy ends in July of 2012. On private insurance (at least at present), a child can get 4 years of intensive. Julia has been on the state’s dime since David died but I can switch her to my insurance (which is David’s state health plan that I pay for myself) and get the fourth year of intensive therapy. It is a lot of money to include her on my plan (she gets medicaid through the state because of her intensive therapy slot -- I could explain this but does anyone really want to know?) but I decided that I would do it if her therapy team thought it was a good idea. Talking to our psychologist was the final team member to weigh in -- team is in a general sense and includes school teachers and our attachment therapists, as well as our IDS lead therapist -- and she agrees that for Julia another year would be very beneficial. We can all point to great gains that she has made over this past year. We can also see issues to work on, especially socially which Julia may be just beginning to open up to. So, over the next few months I will explore the financial end and talk to my insurance carrier to see how we will set up the transfer.

Then, we talked about Julia and school. The thought of having Julia repeat fourth grade has been clanging around in my brain for two months now. I listen to and watch Julia’s utter delight when she can do some of the same work as her class. She is learning cursive with her class and is doing a modified version of a report on animals that the entire class is doing. Julia’s reading is also spring ahead, still by leaps and bounds. Her decoding gets better every day and even her comprehension is coming along. There is a parent-teacher meeting next month and I will check with them, but it seems to me that she may complete the third grade reading curriculum by the end of this year -- the end of fourth grade. Giving her the possibility of catching up comprehension-wise with another year in fourth grade, it could mean that Julia could be in a class reading group in fifth grade instead of reading with a special ed teacher all of the time. It would probably be the lowest reading group and Julia may still need some one-on-one teaching, but she would so enjoy reading with her peers.

I don’t know if this will ever happen with math, but I see the possibility of getting through first grade math this year. She is enjoying working on math right now. No, she is not leaping or bounding but she is counting and knows when addition or subtraction is appropriate in story problems. This is leaps beyond last year but still far behind her peers.

Julia is already a year behind her age peers, being 10 and 11 in 4th grade, instead of 9 and 10. So, retaining her in fourth grade would make her 2 years older than most kids in her class. I understand that this could be a problem during puberty but Julia’s understanding, awareness, and maturity is so far behind the kids in her class now, that I am nervous thinking about middle school in a year and a half. I’ve heard the argument that it could mean that she will be able to drive when she is a freshman in high school, but who knows if Julia will ever drive.

Another year in a school that she loves and feels very safe in with people who love her and are teaching her so well, seems like a win-win to me. And if she never comes to a greater understanding of the world around her or if she never matures socially sufficiently to make and maintain friendship by herself, what does it matter if she is a year or two behind her age peers.

Most parents have some idea of the path their child will take by this age. Certainly, David and I could tell with Cheshire. We had no idea of what she would do, but there was an excellent chance that she would go to college and take up some professional career. We knew that much in fourth grade. When Cheshire was a youngster, there were saving plans to prepay college tuition to a particular school, usually the big state schools, when a child was young thereby locking in the cost of tuition. A genius plan if you could predict where in the world your child would go. We certainly were not ready to make that guess. That determination seems so far out of the realm that we never even considered it.

With Julia, her very future is as uncertain to me today as the choice of college was when Cheshire was in fourth grade. In the best of all worlds, she will continue developing and maturing and learning. She will catch up academically sufficient to one day leave the special ed world behind and learn to survive socially in a complex world. She will go to art school or study dinosaurs or birds in college. Right now her world in expanding and her abilities increasing -- a number of years behind her age peers but at her own pace and in her own time. If her current trajectory continues, i could make the same assumptions about her life that i once made about Cheshire’s. But kids with cognitive delays like Julia’s can also plateau. Some of them do ok for awhile in school, some work on a steady trajectory gaining ground for years but then they stop. Of course, they don’t stop completely. Maybe it just slows down. Maybe there is good decoding in reading but the comprehension piece never comes in, and reading beyond a very preliminary level is never possible. Maybe basic reading and math are learned but more theoretical studies, like algebra and geometry, remain out of her reach.

And there is no one, no test, no research, nothing that would say, that other similarly situated children got this far, but there is a good chance that you child will too. Each day is a surprise and each fact mastered and embraced is a miracle. The progress of today does not ensure progress tomorrow. This is what parents of kids like Julia have to let go of. And it is not easy. I am learning but it is not easy.

But looking at possibilities and limitations and considering this child here and now, I believe that she will benefit by staying an extra year at Randall.

And so, I will begin that conversation.

26 October 2011

“How did you feel weird?” Mary asked me yesterday about Monday.

How to explain? But after blathering for a few minutes, I lit upon that feeling of singleness and solitude that is the result of hours of intense work. The mad scientist. The solitary writer. The researcher. Wonky and feet not touch the ground at all. I’ve been this way many, many times before. A day researching on West law or studying for law school exams or working on a theater design or writing, but shopping? Never expected it all. I think of my friend, Lisa T, who is a real shopper and imagine her having a good laugh at this. Sometimes it takes an unusual triggering of a known experience to point out the importance of that experience. I have not indulged in wonkiness for a long time. Even during my LEND studies, my feet were too close to the ground to wander off. Grief will do that to you.

And another thing, whenever I’ve been wonky, I usually come back into my skin and set those feet on the ground when I got home and started relating to David -- nothing special about it being David. He has just been my roomie for such a long, long time. Juila doesn’t bring me back to the real. I am not sure why. But towards the ends of adult companionship, Mary called yesterday and we talked, and later in the day, Amy and I went out for a few minutes at the end of the day. My for a glass of wine, her for a steamy hot cocoa. We have a new coffee shop within walking distance that serves both. What utter bliss. Thanks, dear friends. Yes, my feet found the ground again. And I am ready to take off.

“Beyond this place there will be dragons.” The last chapter of The Mindful Child bears this title. And yes, I usually read the last few pages at the start of reading a book. Learned the practice from many science fictions stories that had very disappointing endings. I can spot a disappointing ending a mile away. Always in the last few pages. And i am not a reveal all at the very end reader. So, if the last few pages are wise and well written, then I read the book.

But this is different. The Mindful Child is an assignment for a lecture at church I want to go to. Already in the first few pages, I find out that the author, Susan Greenland, is an ex-lawyer (why does this make me feel good?) and sits facing a child meditating (so, this is not my invention. Yay!). I am hooked.

But back to “Beyond this place . . . .”, Greenland says that it was a saying put on maps centuries ago. I think I’ve heard this before. And it marked the place where the known world ended. Yesterday, as I was walking the dog before the school bus came to drop Julia off, I felt that kind of marking. There are circumstances -- late fall always stirs my soul, I’ve started reading again, regular meditation and exercise, the exercise of intentional writing here, intentional moving forwards. I cannot be completely articulate about the change, but there is a move from square one to square two. And I could fall on virtual knees and thank the universe. It is true that beyond this place there may be dragons, dragons unknown and very frightening, but behind this place there has been pain. It will take the unknown challenges over the much too well known pain.

I need to do a bandaid run today. I am still putting them on every night, and although the number is getting less, I go through a few boxes of 100 bandaids a week. The ground seems littered with fallen bandaids and they show up in the washer and dryer despite my efforts to check dirty clothes. The message of taking care of a healthy body and healing a sick body may be sinking in. The doctor was probably correct about the healing taking 4-6 weeks.

When we saw Julia’s gastro-doc yesterday -- a meeting which by the way went very well because Julia did not need a blood draw. He had the results of the blood draw that her regular doc did in the beginning of the month to make sure her skin problems did not have a physical cause. And this doc had access to the results because all of Julia’s records are on a computer file. Yay for computers! But back to the gastro guy. Our conversation evolved to talking about Julia’s picking and her itchy skin. He asked the regular questions that I’ve answered from docs and from my friends, acquaintances, and professional team. I started to answer with a very annoyed spirit. Then stopped myself, explained myself, and offered a recap of all that I’ve done over the past few weeks, and then asked if he had any further advice for me. I was laughing by the end of it which was very good. And he said, “no.” i had covered all the possibly and easy bases, but to see an allergist and/or a nutritionist if her skin didn’t clear up in the next month.

There was a small chalk board in the examining room and Julia wrote her morning schedule on it. “Arm squeeze. Blood draw.” She was over joyed when she understood that there would be no blood draw. The doc felt her tummy and her glands, examined the numbers and said he would see us next year. Her liver is in good shape and the virus is not stressing her body in any way.

“Beyond this place . . . “

24 October 2011

I have spent the entire day educating myself on range hoods and shopping online. There is a big part of me that feels like this is a wasted day! But then, I am not a shopper. Not in the least. I would like to have found the ultimate budget range hood with nice lines and an incredible price. What I found was some very nice and efficient and very expensive hoods, and then some pretty cheap with good looks and no efficiency at all hoods. The mid-range, or perhaps it is more accurate to say the lower part of the mid-range is a bunch of trade offs. I could have just gone with the brand that my contractor recommended which is not bad but only one of those has close to the power that I was looking for and the price is comparable to the other mid-priced models that I’ve found. And I want more bang for my buck. So, I am contemplating spending about $200 more than the recommended brand to get the power. BTUs and CFMs are the operative terms, as well as vent size, how each pieces are to clean and lights are to change. I am dizzy with information and not really closer to making a decision. I think this is the last technical decision of the renovation and thank goodness! I know that this is one more decision, like the sink and the faucet, that once made and bought and installed is probably never thought of again. I already feel pretty distant from last week’s angst over sinks.

I finally started reading The Mindful Child. I see that the work of teaching children about meditation has been going on for a long time. The author, Susan Kaiser Greenland (An ex-lawyer, by the way), has been doing her work since the 90’s. She has an impressive program and a good web site. I feel so drawn to it. I don’t know whether this is because I am ready to jump at any good idea or whether there is a real interest here. And I can’t really be sure that our strong sitting since last spring has really changed Julia. I want it to do some good for kids on the spectrum, for kids with ADHD, for kids who’ve experienced trauma. Is the brain really as plastic as researchers like Richie Davidson believe? And can I use that information now? Next year? And set up some project? What is this parent partner notion and what tools will I have to bring to such a project to be of some use.

To be of some use. Therein is the question. I want to be of some use to who? My target population are kids with neurological differences, including autism, ADHD, and developmental trauma. Where can I be of some use? In a diagnostic team? In schools? In my transitional house in China?

The tools, the tools. I am not quite ready to be looking for them and listing them yet, but I am just beginning to stick a toe in the water. If it wasn’t for a church seminar on the Greenland’s book, I would not even be getting my toes wet. I keep returning to the idea of teaching mindfulness to children and feel in my gut that I have somewhere to go with it.

Julia has some tough days coming up and I have to muster as much patience, forbearance and love as I possibly can. Tomorrow, we go in for her big blood draw. Once a year, she needs a complete liver check up to make sure her Hep B is not overwhelming her body. I completely missed the check up last year. Yeah. Oy. But the last one was in February of 2009, and I congratulate myself because I didn’t forget about it for two full years. Very small congratulations.

The blood draw can be awful. It has been awful. Numerous people holding Julia down. Julia screaming in full terror mode. But we did a smaller blood draw a few weeks ago at her pediatrician’s office and it was not incredibly awful, just kinda’ bad. I am hoping for kinds bad tomorrow. It would be a great step forward.

Her other challenge will come at the beginning of next week. Julia will be sent home from school if she picks at her skin some number of times and will not follow a prompt to stop and do something else with her hands. We -- teachers, therapists, and I -- are thinking of the number 5 or 6. So, if Julia picks and refuses redirection, she will get a mark in a box. If she does it 6 times, then I get called to pick her up. The aim is to call her attention to her picking and make the natural consequences something that she cannot ignore. Julia loves school and sending her home will break her heart. The hope is that this really big consequence will change the habit very quickly. Her skin is getting better. Albeit slowly. We are not beginning this week because it is a short week -- no school of Thursday and Friday -- and tomorrow will be chaotic.

Next week. Next week. Has definite possibilities f being very hard.

I sat in B&N during most of this writing. I had a bit more than three hours of Julia’s therapy time and I thought I would write some and then go to the Y and work out, but the range hood mania set in deeply, or perhaps resurfaced, and I spent much too long looking from web site to web site, comparing and contrasting, without answer. Then, before I left the store, I went to ask if they would have the Joan Didion book on sale on November 1, the publication day. And as I went to and from the information desk, I passed book. Books. BOOKS. I fingered some. I read titles. I took a few out. I did not let too many catch my eye. I could spend an hour. Much more. Looking at titles. Touching. And letting the sheer number of titles, the volumes of volumes overwhelm me.

Yes, I want to whisper that I do think that there is a writing project here. Inside of me. I think that it is the next big project, as fallow year winds down, that I will pick up with vigor and purpose. But to have so many books within my sight, within my reach, i get much too scared to think that I could put a book together and get it published. It is the old fear, the fear that needs to be banished, but the fear nonetheless.

23 October 2011

I bought a roasted chicken from the supermarket on Friday. After two weeks of take out Chinese and Indian, frozen soup and stew, and salad, an actual cooked chicken was great. Yes, greasy, but we licked out fingers and grinned. And I ask myself, why haven’t I ever done this before? Tomorrow will make two weeks without a kitchen. When I tell friends who cook of my kitchen-less state, they sigh. The more they cook the more they sigh. I am so glad to see this reaction. I begin to think of myself as quite a wimp to miss my kitchen and its convenience so much. Of course, running upstairs every time I need water is probably good for my thighs. When I asked Julia yesterday what she would like to eat next week, she said salmon and steak. Ya’ think she is missing the kitchen too? I told her we would go out to eat at least one of those things next week.

Julia and I are having a quiet Sunday. We made a schedule and are doing through the items: cleaning (I washed dishes, folded clothes, and took out compost. Julia folded socks, put her clothes away, and collected garbage from waste paper baskets), coloring, math (we did a few pages in her favorite math workbook. Mostly addition. She is getting the simplest of problems. It is very exciting to see her work. She still uses some tangible way to add up numbers, like her fingers or pictures, but she has the concept. She also knows that zero plus a number is that number.), playmobil (I want to get her a new set for Christmas. Having a hard time deciding which one.), walk (A long walk around our bay), reading journal (Julia has been enjoying MArtina, the Beautiful Cockroach, by Carmen Deedy, for most of the week and I really want to see what she decides to draw to represent this book.),and a bath.

Talking to a few parents at last night’s party was good for me. I really have become far more protective of Julia this past year. I have isolated us. I have not reached out for play dates for Julia and have not taken her to that many big gatherings of kids. Part of this is because of the demands of her autism therapy. 20 hours a week takes up so much of our free time. And I also have the perception that she doesn’t measure up to the social abilities of her peers. But last night, I saw that there were some kids who take care of her a bit. And some kids, older and younger that play with her. There was even a parent who asked if Julia could come over to play with her daughter. And she called today to set up the play date. The little girl is a classmate of Julia’s. Last week, this child wrote a story for Julia and Julia drew a picture to give to her. So, just maybe I should look out of our shell a bit.

I went to my first chalice group meeting on Friday morning. I have no idea if other churches, other denomination have such groups. At my church, chalice groups range in size from about six to ten people. They share certain features: the lighting of a chalice; short readings at the beginning and end; a check-in by each member; and a covenant created by the members dealing with how the group will interact. Topics covered are varied. Some are spiritual, some ethical, and some reflect the personal interests of members. It is considered a good way to deepen connections at FUS. I have wanted to join a group for awhile, especially after the grief group that I went to last spring. Generally, I really like the people who are at FUS but it is a big church and for me, finding smaller groups to be a part of is key to feeling in community.

I joined a group based on the time that it meant. Okay, not a rich philosophical decision, but honestly if I need a babysitter to attend meetings, there is very little chance that I will be a regular attendee. I do it for PTO meetings but really nothing else. This chalice group meets one Friday a month at 9 in the morning. Probably because of the time, the group is made up of women who are older than me. I wonder if my wistful writing about the lack of a mother figure made this opportunity seem right. None of them is old enough to be my mother, but older sisters, aunts possibly. I enjoyed talking and listening. I did a bit of spilling my guts as I am sure most new comers do. I could see how I have changed in the last few months. Talking about David’s death has changed. It is now in the past. David is in the past. For the longest time, I was still saying “we” about everything. Like I always did. And then, I went through a phase in which I was very conscious about saying “I” even though I still meant “we.” Now, there are things, events, experiences, decisions, for which “I” is the natural and appropriate subject of the sentence. I am not happy about this, but it is not as searingly painful as it was a few months ago.

Next month’s topic is grief and mourning. No, not by my choice. But I did volunteer to read Joan Didion’s new book and to run the meeting. This is no big deal but I have to laugh at myself for an inability to keep my hand down when volunteers are asked for. I like this about myself. Really, I do, but I could have just enjoyed a few meetings before I thrust myself to the front of the line. Of course, the book, Blue Nights, will be released on November 1, and because I knew I will just swallow it whole, this is not a tough assignment. I am sure my biggest problem will be to figure out which passages to read or copy, and how to spark the discussion.

For our strong sitting this morning, Julia asked if she could sit in my lap. And so, she sat crossed-legged with my legs and arms around hers. Before we began, I explained that I usually meditate before she wakes up in the morning and on the weekends I miss this time. When I do strong sitting with her, I usually concentrate on her, but I explained that on weekends, I was going to do my own meditation. We would be together, but I would not correct or put my attention on her. And so, we meditated for 15 minutes and sat together. I felt the full force of her monkey body as she squirmed and shifted in my arms. Every so often and for minutes at a time, she rested her head against my arm and was very still. By the end of it, we were very much in sync and through out this day, we have held onto the feeling.

Halloween, take one

I don't know if this is true all over the country, but in Madison, Wisconsin, a halloween costume gets some good wear and tear. No one night stand here. There is a church parade, a street parade next Friday at a community center, and there was a party last night. Julia was soooo excited to get the invitation. She does not get invited to many parties. This is the first this year. She carried around the invitation for days until she lost it and I had to ask her teacher about the party because I had not made note of anything on the invitation. (Of course, this morning, the morning after the party, I found it in the bottom of our library bag and then remembered exactly when she put it there.)

I finished the purple ballerina dinosaur costume on Saturday morning during Julia's therapy. I still have dino hands to make but I'm giving myself the weekend off. Julia added her magic wand and she was very, very happy with our results!

The family that hosted about 30 or so kids in their backyard and house was every so kind and together. I think the rest of us parents should have contributed to a fund to have the house cleaned professionally and deeply. There were outside activities and a trampoline and food and dancing in the living room that was full of smoke (Kids still dance to YMCA.), and a craft table to decorate miniature pumpkins and races and a scavenger hunt for candy. Julia ran around with the best of them. She really enjoyed the trampoline, ate a cupcake, and did some dancing. She had the sign in and making a name tag protocol of all good seminars and some parties down cold. She was happy that I stayed (I was not the only over-protective parent to stay and keep an eye on the ruckus.) but was also happy to be free with her classmates.
The party began at 5 and ran until 8, but by 7:30 I noticed that Julia was working on a pumpkin and didn't really want any more socializing. So, we left. I admit that I had had enough of the noise and frenetic activity as well.

I know I have become much more protective of Julia than I was two years ago. And so, I am so glad that she was invited to this party, that I talked to other parents, and that I had a glass of wine. Julia and I got home, I had a bit of dinner, we watched an episode of Dinosaur King -- Julia's current favorite tv show -- on Hulu, and then went to bed. I thought I'd lay down with Julia and then get up, but I never made it out of bed.

Good times!

22 October 2011

Oh, I want to write here but it is so late and I've been sewing a purple dinosaur ballerina costume for two days now. And there is a halloween party tomorrow at 5. It will get done and life will return to normal. But ya know, sewing like this -- kind of last minute, with a deadline -- like I used to do a long, long time ago, is like getting drunk on some fine old wine. Nothing like, working intensely on a project, watching some wretched tv show (Yes, Cheshire, I will finish both seasons of Parenthood soon!), and giving myself time without self-conscious, examination is sublime. This is doing something without getting in my own way. Something that is sure and true, a challenge but easy, something that I feel completely competent at, no question but it will be a success.

I could wish hard that I had other things is life that I felt that way about. The ease. The confidence. But this is something. And something to recognize.

Julia is excited about the costume. This is what she asked for. I tried to convince her to be just a ballerina, I mean, that costume would have been SOOOOO much easier. I am sure that I tried to convince Cheshire to be some easier things as well. But Julia insisted and I agreed. And I got on board and it is fun. It was not easy to find a pattern. (Did I write about this last week?). I had to order it online and from ebay. And the fleece that I bought, which is going to look so good and be warm for Halloween night (This is Wisconsin after all, and Halloween is usually a week before the first snow), was hard to cut and cumbersome to sew. And taking on a sewing project to do in the dining room/kitchen/ and now work room is crazy! Like apartment living in my Jersey studio or my East Village apartment. Crazy cozy.

And do I need to say, I am enjoying myself. Work. Task. For no other reason but to please myself. And pleasing Julia in the process.

I have complained about a lack of resilience and I hold with this complaint. Yesterday, coming home from riding, Julia peed in the back seat of the car. And I was furious! I lost it completely. I was so angry. It had been a hard day. I had heard from my financial advisor that the money that I expected to get to pay for part of the renovation was not forthcoming. I don't want to really write about financial matters here, but I panicked badly. Ed was bringing in the first of the cabinets and they were so beautiful and I was scared that I couldn't pay for them. It would not have been that bad. Of course, I had money to pay for them, but it is not as liquid as I expected. 24 hours later, it has all worked out. Worked out fine, but there is that time of panic. That time of irrational fear. And it is fear because I have to do it all myself. Not just the work, the work is the easy part, but the decision making, the blame, the failure. It is all on me now. This is the part of single living that I have not really completely understood. The part that makes me feel so vulnerable. It is me and me alone that is responsible for making my life work out well.

I had a session with Ellen this week and she said that my spirit guide are saying to go for it. Take on what I want to take on because there are no more judges, no one to hold me back in any way. I am safe to fly. The flip side of this is that I am free to fail. And like some old cliche, that is what scares me the most.

The night that I took David back to the hospital with the gall bladder infection which would kill him a week later, I experienced a surge of power. I don't think I had ever felt so strong. Scared, yes, but strong. Strong enough to take care of David, to make the decisions that needed to be made and to be sure. I have not often felt that sort of power, and David's death knocked it out of me and has left me with so little resilience to take care of myself and Julia. But today, I got the car cleaned and I moved money around so that I can finish this renovation easily. I am back on solid ground. Not feeling powerful, but feeling adequate. Felt like I got the "C" today. Not the "A star." But a "C" is not bad at all.

20 October 2011

I had a dream last night. One of those incredibly vivid dreams that seem so real that you carry them with you, hold the images in front of you for hours afterwards. It was about my aunt with whom I have not spoken in years. She is/was my mother’s sister. She and my mother were estranged when I was about 7. I remember the arguments although I have no idea what they were about. I have no idea whether she is still alive.

Anyway, in the dream we were talking together and about Julia. I was feeling guilty that i was talking to my aunt about Julia. The guilt is left over from the years that my mother warned me and my siblings not be to be in touch with my aunt or her family because they would . . . I don’t even know what they would or could do. Just that it would be awful. And so, even when I could, I did not get in touch. And she never reached out to me.

But in the dream, we were at the New York Toy Fair (a real event that I frequented a few times in the 80’s when I was working for a production company that was trying to break into the kids tv biz.) and I wanted to buy a game for Julia. My aunt was advising me on some game that I did not know of. And then, she said she had something to tell me - - - at which point the alarm went off. Damn! I lost the dream and there was no going back.

She is a person that I’ve always wondered about. She could draw very well. According to family stories, she wanted to go to art school after high school, but my grandmother insisted she go out to work. She became a legal secretary. She married the boy next door. Really. Their wedding was only months before my parents’ wedding and I was given to believe that my aunt purposely planned to get married before my parents to upstage their event. My aunt and uncle lived in my grandmother’s house -- a two family in a town which would become a rough neighborhood in Jersey years later. My grandmother bought the house from the bank as the Great Depression was winding down. Bought it at some kind of deal to compensate my grandmother for the savings that she lost. My aunt lived on the second floor and raised her children in that house. My parents, although they bought a two-family house with my father’s parents, looked down on my aunt and uncle for not going out on their own and buying their property as they eventually did.

I was given to believe that my mother and aunt were close of children and young adults. My two cousins are close in age to my siblings and myself. They were young families together. After my mother and aunt parted ways and while my grandmother was alive, we would visit her in her downstairs flat but did not visit with my aunt and uncle. As a very little child, I remember spending many if not most weekends with the entire family in an out of the two apartments. So, it was a distinct change when that stopped. Of course, us kids wanted to visit and play. And my cousins would sneak downstairs to see us when were came to visit my grandmother and eventually and after much whining, we would be allowed to go upstairs to their house to play in their rooms with their toys. We, my brother and one sister and I, were not as careful as my cousins with toys, and I am sure we broke some of our cousins toys. And I remember my girl cousin having a very beautiful room. I was impressed, even as a 9 or 10 year old, at how beautiful the decoration was although I can’t for the life of me remember what it looked like. I recognized some natural ability to put things together. To make something beautiful. Something that my mother could not do. My mother’s choices went together, matched, and she was neat, very clean and tidy, but there was no inherent style or flow in the house I grew up in.

Through my child eyes, my aunt’s great flaw was that she was a great preserver. Her living room furniture was always covered. When the sisters were still friendly, my aunt’s couch and chairs was always covered with white sheets. I know that my cousins and siblings played and tumbled in that room -- there was no play room or basement to send the kids and I remember the sheets on during Christmas and Easter. We all dressed up and looked our best, but the furniture was being preserved. For what? For some better guests? For some better time? We probably tried playing tents with some of the coverings. It was a favorite game in our house. Years later, when we were all apart long enough to make us strangers, the upstairs living room was covered in plastic with plastic runners on the floor. It was still beautiful to my eyes, but it crackled when I sat down and was cold or sweaty.

One very odd thing was that, even years after the sisters stopped talking, the bought identical household items. My aunt and my mother bought the same stove, the same tv, the same rug. Even after they had not spoken for years, the houses matched. My mother was always angry about this. I thought it was magic. My mother saw conspiracy. The matching thrilled me.

Just one more thing. Throughout my life, especially during my teenage years, when my parents yelled at me in bursts of anger, they would call me by my aunt’s name. This, if nothing else, kept a connection with this aunt that I no longer knew. I don’t think that I looked like her but I think I was the only sibling who was called by her name, so I reasoned there was some connection. I have no idea what it was.


I went to a meeting with Julia’s teacher and aids and our lead therapist to set up consequences for Julia picking at her skin when she is at school. We are going for big consequences that will really get her attention and turn her attention to what she is doing. The idea is to give her a specific number of warning reminders when she begins to pick and if she doesn’t change her behavior or the activity, she will be sent home. As much as this might be a great treat for some kids, for Julia, who wakes up quicker on weekdays when she knows she is going to school, this is an awful consequence. And i predict that it will not go on for long. We’ve agreed to use the system (which is still in the works) for three weeks with the hope that it will draw Julia’s attention to what she is doing so strongly that she will stop doing it. Julia has gotten and will be getting positive reinforcement for any good behavior, but we all feel that this rather drastic negative reinforcement is necessary for change.

Julia’s body is healing slowly, and she is picking less, but the healing is painfully slow. I still bandaid and bandage, not as many as two weeks ago, but too many to keep count. It is depressing to watch the number of bandaids decline so slowly.

I spent time today cutting out Julia’s halloween costume -- a purple ballerina dinosaur. There is a party on Saturday -- the first Julia’s been invited to in a very long time -- and she is excited to wear it. I tried to persuade her to be “just a ballerina” but not very aggressively. I do not sew anymore. There was a time that I was pretty good at it but that is so far in the past. I remember what to do, how to do it, like riding a bike, like all those automatic things that come back. And the pattern is very easy. And I feel that joy, like gardening joy, at doing a well known task. At picking up a strength and making something to please Julia.

Yesterday, getting ready for school, Julia asked if I was going to put on makeup for her costume. She loves to have it put on, always have, but only for halloween. She asked me if I would buy her, her own make up and I agreed. If she wants to play at this very grownup pleasure, I will not deny her. I told her that she could not wear any make up for school or for church. No one would care at church, but I was thinking more about getting out of the house to be at a service on time. i contemplate hours in front of the bathroom mirror, which I am not adverse to, but just not when the school bus is coming or I have announcements to read at church.

And the kitchen got its coat of insulation sprayed into it on Tuesday. Drywall starts on Thursday.

17 October 2011

Lying fallow. The Update.

Today I did what I needed to do, and it doesn’t feel like enough. Lying fallow is not glamorous.

I woke up at 5:45. Meditated for 15 minutes and woke Julia up at 6:09. I got her dressed -- she actually complained a bit about not being able to do it herself, and I silently sent up a prayer of thanks for such a complaint. Replaced a few bandaids that had fallen off in the night. Really, used bandaids are strewn throughout the house. The dog takes no interest in them and I just walk around pocketing them until I get to a trash can. I know that Julia is not taking them off -- at least for the most part -- and I never see them falling, but like the leaves in my gardens, bandaids rain.

I served Julia breakfast in three courses. First, drugs -- last day of steroid --, then, banana, then waffles. Doing it this way is so much more efficient that presenting her with all of the meal at the same time. She ate, complained that she couldn’t color before school. We did strong sitting for 10 minutes and tapped a bit. Then it was on the bus and off.

I walked the dog, ate my muffins, covered the piles of belongings in the basement with plastic sheeting, recovered the last load of wash from the dryer. Access from the kitchen to the rest of the house with a laundry basket is still easier going out the back door and in the front door. I washed dishes in the bathroom, put away clothes, picked up and cleaned up a bit, and then sat down to figure out my sink and faucet.

The sink that I wanted -- considering size, material, and cost -- is on backorder and could be delayed up to 8 weeks. I’m looking for a stainless steel sink, drop in (or overmount), 16-18 guage, at least 30 inches wide, with a back lip for the faucet to be attached into. In truth, there is only one model in any brand that meets this criteria. The size is a bit bigger than the usual, and the drop in quality is not in favor right now. Or it is in the cheaper sinks. This is a plain, ordinary looking sink that people want to pay very little for. Most people willing to pay what I am are looking at undermount sinks or something fancy like the farm house front sinks.

So, I find the perfect one but it is on back order. I find two more that cost a bit more but the price is now edging up towards the Kohler which evidently is a brand name that cost most just because of the brand name. But now the Kohler is looking pretty good and I find an on line place to order from. The shipping is free, which strangely is not true if I order it from my local plumbing supply store, and the price is 8 dollars shy of 300 dollars less than if I order it locally. And I finally commit to a faucet -- ugh, I don’t want to write about the faucet.

This renovation process is so strange. I have gone through all of my life so far never, ever choosing a sink or a faucet. This is not like a sweater -- I know which collars don’t look good and which wools are itchy. And this is not like shopping for a wedding dress. Maybe I dreamed about what I would look like at my wedding -- I hadn’t and didn’t, for the record, but I had been to weddings. And yes, I have been in kitchens. Many. But I’ve never looked critically at sinks and faucet. You bet, I’m going to be doing that now.

So the sink and faucet ordering took most of the morning. I did consult with Ed before placing the order and talked to a very nice lady who processed the order. By the time I was finished, however, it was time to run across to the bus stop to get Julia and get her to clinic for therapy. Then, it was the Y for me. Yes, the second week of my fitness commitment! I have to build up to a decent work out but I did break a slight sweat today and my heart rate broke 120. It sucks being old and having to moderately break into my old workout. Right now, I am warming up, doing 20 minutes in a fast walk on the treadmill, work on the weight machines and do 10 minutes on the elliptical. I hope that in a few weeks, I am on the elliptical instead of the treadmill, take a yoga class, and incorporate swimming.

Then it is errands -- more bandages, a few food items, returning the boots that I bought on Saturday. Oh, I have been really wanted casual boots. Boots that i could wear with a skirt. Boots that could dress up a pair of jeans. But I don’t want heels and that’s what I find. On Saturday, i found a pair in the store next to the store that I bought the material for Julia’s dinosaur costume in. The boots were almost perfect in shape and size, but they were this odd green-brown. I fit well and I bought them without too much thought as to what they would go with. Over the past two days, I’ve looked at the boots over and over and next to my clothes. They go with nothing except jeans. Although jeans are my preferred uniform and I could wear the boots with jeans, but not with my brown skirt, not even with black pants -- well, they might go with black pants if I was careful with the top. Too much trouble. And I really don’t want boots that go with just a few things. I want boots I could wear every day if I decided to. And so the books go back. Took them today. Found a pair of grey clogs that I can use much more often. A bit disappointed but satisfied that I stuck to my decision to simplify so much of my possessions including having many fewer shoes.

I finished errands, spent some time in B&N with a chai and my laptop, tapping away, before needing to pick up Julia at clinic, rush home to heat dinner (Feeling grateful for frozen soup), upstairs to a shower, review of the healing body, bandaging and bandaiding, and then to bed to read and to turn off the light for Julia to fall asleep.

That’s it. That’s it. Nothing engaging. Nothing challenging, unless it was about sinks and faucets. Here and present most of the day. Taking care of business and putting my house, literally and figuratively into order. Right now, wondering and not being present.

One more thing. During the driving and the errands and running Julia to and from clinic, I listened to and sung along with Joni Mitchell’s Blue. Just over and over a few times, indulging in her voice and matching my squeaks to her luscious sounds. Just before we pulled into the driveway, Julia asked, “Mommy, is that you on the CD?” Not a bad compliment for the end of the day.

16 October 2011


So, I read this story. A mother’s story about her baby who is 18 months old and will probably die before he is 3 years old. I saw it because it was a link on facebook. Posted by a friend, a cyber friend whose son came from the same orphanage that Julia came from. She also has a daughter from China, a perfect, beautiful daughter who is losing her sight. She commented about perspective and living day-to-day. I read the article and perspective was the first thing that popped into my head. We both have children that are or will be falling outside of normal. We fight for their potential, for their possibilities, for their futures. I think we are both scared, but we both know that we probably have tomorrow. I don’t know how, especially after losing David and this past month feeling so little control over Julia’s body, how the day-to-day feels like in that mother’s shoes.

Julia and I went pumpkin picking today. We went to a place that we had been to before. Not last year, but the two years before that. I remember, hardly remember last year. Still, so numb but determined. I was not determined this year. I asked Julia if she wanted to buy pumpkins or take the hay ride to the patch and pick them out. She wanted to ride the wagon and pick her pumpkin from the ground. And so, we went. She picked a very small pumpkin. She could carry it. It did not have a prickly stem. She made quite a fuss about that last year. She remembered and still doesn’t like the prickly stems but was much more careful about what she picked out.

We go to the particular place to pick pumpkins because it is a safe place for Julia. The people who own the farm donate a day’s worth of profit to an autism group because they have one son who has autism. We usually try to go on that day but it was so early in October and the weather was still so warm that I didn’t really feel like it was time yet. But going there at any time is comfortable. People who work at the farm are generally kind and attentive to Julia. She talked to the guy who was driving the wagon and he answered every one of her questions. Even the one about the dinosaur. The woman at the popcorn stand helped Julia to carry the very full bag of popcorn by herself, and did it in a kind way. I don’t think that Julia notices much of this kindness but I do. I appreciate that she/we are not stared at when she speaks louder than is appropriate or when she wants to play in areas that are designed for younger kids. Am I imagining this? The accommodating feeling of the place. I don’t think so.

Julia had a hard time getting to sleep tonight. She is still in my bed and I am still laying down with the computer while she goes to sleep. Tonight, it was taking too long and when I asked her if she was picking at her skin, she admitted that she was. We went to the bathroom and re-bandaided and went back to bed. I asked her if my arms around her would help her get back to sleep and she said, yes. I held her until she feel asleep. Part of me feels totally defeated. This is many steps back. But part of me feels that if this is what healing must look like, then I am here for it.

I am still bandaging and bandaiding. I have stopped counting bandaids. It was too depressing. The number was not changing quickly enough. After almost a week on steroids and with everyone on heightened vigilance, Julia’s skin is beginning to heal but nothing is completely healed. When the doctor said 4-6 weeks she was not kidding. We are in for the long haul.

Stock tip: Bandaids!

Quite unexpectedly, I have become intimately acquainted with Julia’s body. My experience with kids’ bodies is one of intense caring when a child is very young and then a gradual backing off, allowing for a natural development of self-care, modesty, and privacy. I have never been as intimately caring for Julia as I would have been had she been in diapers when she came to us. Recently, I’ve been backing off more and more, asking her to bathe herself and dress herself most of the time. The picking stopped all of that. It is not always easy getting tights and socks up and around bandages and bandaids. And I’ve been washing her with soapy hands and not wash clothes to avoid any rubbing on delicate scabs. And I spend a lot of time putting on bandaids in places like her butt and her upper legs. I can hope that the touch is as healing as the medication and bandages that I apply.

Julia is fast asleep beside me and I should doze as well. We are in a dance of healing we two. A few steps forward and another few back. Some to the side and some on a diagonal. The path is anything but straight and who knows what is coming around the corner but I can be and do whatever my girls needs.

And a few new pictures of Day 5 renovations in the House blog.

Pumpkin picking