30 November 2011
From Sunday (27 November 2011): Ashley, our newest therapist, is over for the first session after our week away. Julia is so excited to see her. Ya’ think she is tired of her mother?? Ashley asked Julia about her week away and also who those people -- Lisa, Nick and Michael -- are. Julia did not know what to say. I helped out, asking if they were her aunt and uncle or her cousins. She said no to those suggestions. Finally, she said, “They are my special family. And I love them.”
And now, today. I am at the surgery center waiting for my every 10 year colonoscopy. I have some waiting around and down time but if all goes well I will be done quickly. The benefit of coming in early. From what I remember 10 year ago, there wasn’t as much prep as there is now. I had instructions to change my eating habits for 5 days before the procedure, and to change to a diet which is just toxic to my health and weight -- no fiber, protein, milk products, white rice, white potatoes. They did not say all the sugar that I wanted, but refined sugar products would have fit the bill. By Sunday, I was pretty disgusted with the limitations and so I started fasting. Between a few days of fasting and the electrolyte solution last night, I am probably cleaner inside than I have ever been.
The IV has been started and I sit waiting. Amy brought be here this morning and she will come back to get me. The need for a friend to drive and listen to the doctor when the procedure is over which I knew about from the last time and which I heard about when the appointment was made in August was another jolt. This was what a partner did/does. In the surgery center now, as they ask questions, put on my bracelet, start the IV, I have such memories of David’s hospitalizations. There is no reason but i want to tell the nurses about David -- a strange impulse. Maybe I just don’t want to hold the memories alone.
But I do.
Julia did well in math group yesterday but she did manage some picking in the bathroom. I have to call her doctor today to find out whether I can continue to give her benydryl. Right now, she is taking it in the morning and before bed. I think it does help although it lowers her energy. A third dose in the middle of the school day might make the end of the day easier for her, might keep her from picking on the school bus. In phone tag with her doc, I am getting a referral to dermatology, although I don’t hold out much hope for that. It may take a month or two for dermatology to get back to us, and this isn’t really a dermatological problem. I also dread going over the story three or four times for a new specialist, who could read it all in the chart but whose administrator, nurse, and nurse practitioner will want it spelled out for them.
Just met the doctor. A nice, quiet man, but without much bedside manner. Not that I need any for a test given once in ten years.
Again, I’ve been losing my temper with Julia over her picking. It is not just her picking but her silence when I ask what she is doing, or where she picked. A week’s worth of healing gone in a second. My frustration climbs and I cannot be a bad enough mother to impress on her how serious this is. I know. I know. It all does no good. And then I feel awful that I was so mean to her. A vicious cycle that does no good for no one.
For medication right now, I have been discouraged to use benedryl for a third time during the day but will get a refill on the antihistamine for her to take during the day. Amy also gave me a wound and itch salve which is made with all natural ingredients. It is in a little tin and Julia can take it to school to use giving her a measure of control over the circumstances.
I also had a long talk with our psychologist on the autism team today. Her advice is to hit her hard with the consequences. Very behavioral, feels awful but she says that it works and short term pain is work long term gain. She wants to reduce the number of chances Julia gets in school so to ensure that she is sent home on a regular basis until she makes the effort to control herself. Also, at home, to go back to the losing dinosaur consequences and to do it often, returning the dinosaurs once a week or so, but making the consequence swift and immediate. She also didn’t think I should drive Julia to school, rather I should consider taping on the gloves so that the don’t come off easily, and if I or the teachers find she has picked, as evidenced by blood, she loses a chance or a dinosaur whichever is appropriate. Really tough love. We will work on rules by the end of the week to start on the weekend.
And then there is the possibility that it is the Adderall (ADHD med) that is exacerbating the habit of picking into a tic. And I have a call into her drug doc for that one. I want to solve this. I want to get back to our life before bug bites. Last week, Michael (14 and thoughtful) asked, what are you going to do next summer? Good questions. Answer: Oy!
Early evening: I have a lovely and perfect colon and took a variety of naps afterwards. I was thinking of doing a bit of work but have tripped up the stairs twice and decided to lay low for the day. I put the car in the garage in expectation of some snow. Did not unpack any breakables today.
An adoption friend, whose daughter comes from the same orphanage that Julia does and a child who looks like she could be Julia’s blood relative, posted a picture of her daughter at five. A very mature looking picture in the way that kids can strike a pose and suddenly look like adults. A magical insight of the future. She looked mature and knowing. And because she looks like Julia, it gives me certain pain. I have never seen such a look on Julia. At five this child looks years beyond Julia at 10. And it send me to worry and fret. What will the future bring to my girl. It is almost not a question. Just a wonder.
26 November 2011
A facebook friend posted about her 25th annual garage sale. Through rain or shine, good times and bad, she has been passing on her stuff for a pittance and making a party out of it. Comes early and share our donuts. They are probably home made. I can’t imagine such a tradition and to make it fun? Not me at all, but this morning I woke up with ideas about an after Christmas party and since Hanukah and Christmas coincide this year . . . well, just that ideas like that are closer to me. An informal gathering to say many thank yous, to celebrate the winter season of lights, to share the new kitchen renovation, to cook a lot and have a full house, to chase the sadness and fill the house with cheer. This time with Lisa and family, and Cheshire and Chris has been lovely, but sadness continues to surface. Sadness now has layers -- just missing David is still there, but another sadness of moving on, feeling us moving on -- me with this year and the kitchen, Cheshire with beginning school very soon, Julia and reading and her numbers, and this battle of scabs and scratching. And I have shared none of this with David. If he appeared today, it would take days to fill him in. I/we are living through things that he was not any part of at all. And the awareness that there will be more and more of these. I am moving so far away from him that his influence/opinion/reference dims to nothing. I know that this is natural, this is what picking up and moving on is all about. But it is still sad. Still painful.
And when I am with Lisa and Cheshire, I am not lonely. There are others too with whom I register contentment. Who push me out of loneliness. How many times can I say that they are not David? And I know that they are not. And that is what is.
I still wonder about joy.
I am ready to go home after a week away. I have been on hold for weeks, waiting for the kitchen work to be done so that I could totally move back into the house and immerse myself in the next phase of the year. The scheduler from Home Depot called today. My countertop will be delivered on Thursday, December 1. Perhaps if I am lucky, Ed will be able to work on Thursday and Friday and finish up the kitchen. And so, here is the easiest indicator. Yes, change. Yes, shifting.
There is a shifting that has been shouting at me all week. After seeing Ellen, my spiritual healer, and feeling giddy releasing responsibility that I never appropriately held. So what is there after release. The lightness of being goes where?
Yesterday during a walk Julia told me that she “hated” that she had to love me so much. I have been on her, with her, telling her how to run her waking hours, and to keep her hands away from her itchy skin at night. She has had no autonomy, no independence. I have treated her like a young infant, and the strain is showing. Still, with three days of steroids in her body, bandaids on the scabs, and gloves on her hands, there is some healing. There are a few healthy scabs that need just a few more days. And I pray. And pray. And then I think that she can tell me how she hates me only because she trusts that I will tell her that her hate doesn’t matter. She is still mine. We still do the dance of attachment.
My jersey realtor called late on Friday, not to respond to my call of a few days earlier but to let me know that she lost a check that I had sent her. The repairs on the house, the hauling away of what was left there, the expenses of an empty house. She told me in passing that she had received a very low offer, not even worth calling me about, but worth the mention. Even though it is low, I take it as a good sign. There is someone out there looking. We will drop the price next week -- no where near the “offer” -- and I pray for that buyer who will be getting a great deal and will finally release me from inappropriate responsibility.
We listened to the beginning of a retreat given by Pema Chodron (SP). Much of what she spoke about resonated with me. Living intentionally like walking in the middle of the river. Letting go of the river banks -- hope on one side, despair on the other. Walking the middle path without reliance on that which can change. And that which can change is everything. Water logic, not rock logic. Not grasping, letting go, and letting it flow through. I want that life. I have touched it briefly now and then, but mostly during my most intense grief, but living that intentionally can spiral me into depression. It is risky, a life without bounds. It is painful to live in the present when the present is challenging and patience deserts me time after time. But hearing someone like Pema talk about what I have been struggling with, talking with Lisa and Nick and Terry, I am no where near alone. What I see as a lonely journey is a journey with so many who are traveling the same pathway. They are shadows at times. They are not near to offer daily support. Not near enough to sit together for the evening meal. They are not in my sight lines, but I need to remember their presence. Need to remember that we walk in the river alone but in company. Today, that feels like enough to sustain me. If I can do it, if I can become more accustomed to this middle way. Find some balance on the slippery rocks and the current which pushes me this way and that.
We are traveling on an empty plane which took off on time and will probably land on time. I am grateful for this small favor. It is the blessing of not traveling in tomorrow’s madness. We will have a long hour’s ride home but we should still be home before 10. After Lisa dropped us at the airport, all Julia could talk about is when Lisa and her family can visit us at our house, when we can go and visit them again. She wants them to come for Christmas and was so sad to hear that they would not come. I told her that Cheshire was coming out and that Linde would visit us as well. She perked up. I am so very grateful for a family of choice that loves and is loved by my spicy dragon.
24 November 2011
23 November 2011
Days of talking, shopping, cooking, talking some more. I have kept Julia on a very short lease. Actually, no lease at all. She is my shadow, at my side day and night, but she still manages to scratch. I’ve left her asleep for the past two nights and went downstairs to join the others for an adult movie. It has been Julia’s only time alone. Yesterday morning and this morning I noticed bloodied spots. But to be fair, the skin where I’ve been using the steroid cream is dry, scaly, and very thin. So, two days ago, I stopped with the steroid cream and have been using only my facial moisturizer on her in those places that seem the worst. Of course, that means that there is probably more itching for Julia. And more itching means more attempts at scratching, and more scratching means more bloodied scabs with or without bandaids and bandages. To be fair, there is healing going on. Slow and in a few places. Julia’s left arm and lower left leg have one bandaid a piece on each. Many of the remaining sores are smaller than they were. These are very slow victories. I am hoping that being together this week will push healing forward, but it is a labyrinth of a healing process. Twists and turns and dead ends on every path. Keeping her very clean -- daily showers seems to help the itching more than it dries the skin. Giving her ice in a baggie can help in the late afternoon when itching gets intense. The facial moisturizer appears to be soothing some of the steroid-affected skin.
I spoke with her doctor this morning and she is going back on oral steroids for five days. Five days are what she tolerated the last time before becoming a bit wonky. I hate to put her back on the drugs but we both need some relief. Last night she slept with gloves on and this morning the leg that I could not wrap because it was too raw looked a little bit better. It is exhausting for me and awful for her.
On the estate front, I have no option but to continue until it is finished. “And I bow to the strength that flows within.” A comment from Sharyn. Strength that comes from releasing expectation and hope. It is hard to believe that after work long and hard that my brother will not willingly do the work, will not take the time to call me after I left a message for him. Instead, he called the lawyer and lied to him that I had not gotten in touch. I worked some yesterday at releasing my expectations regarding my brother. I have been concerned, and I have wondered about him. I am releasing all of that and there is strength that comes from such a release.
Julia is doing a travel journal as home work for missing this week in school. She has done three entries and they are all about making lists, shopping for food, cooking, and eating. Ummmm, I think she is accurately perceiving out activities this week. Someone in this house has done some life sketching in a big sketch book that Julia is now using. She is working on finishing one of the life drawings -- one without hands, feet or head. Her additions to the picture are not very good -- she has no idea of what fingers and feet look like or how they are attached to the body, but they are the correct size which is interesting to me. She can see how the body was made -- short, sketching strokes of the pencil and she is trying to copy it and not impose her sure heavy hand which is her usual style. We are in such a crisis mode right now with her body but every so often she does thing that remind me how much of an artist she is. How much she needs a wise teacher. How much is still inside waiting to be developed and to show itself.
20 November 2011
I write and think about resiliency. Didion writes about fragility. From my perspective they seem to be close to the same thing. Maybe different takes on the same theme. I think I was born with it, and life came at me in such a way to develop it. A sense of humor, someone said in chalice group at FUS, and certainly that is part of it. Generally, I was unaware of how powerful resiliency is. Was. Was until I lost it. It is as if it was eaten by locust swarming near my soul. I have had no idea of how to replant, cultivate, fertilize, and wait patiently for flowering.
Patience and time. And gentle guiding reminders. And a willingness to learn lessons again and again.
This past week. After the desperate maneuverings to rid myself of the burdens of my mother’s estate -- which are neither onerous nor gut wrenching but in which I perceive a quick sand situation from which I cannot imagine release -- only to discover that the personalities involved lack the generosity of spirit and possibility the ability to run the final lap of the marathon, I bow to the inevitability of continuing to the finish. This is not what I want. I did not need the lesson in endurance, but the lesson of perspective. What I chose to look at, to consider, to take into my heart to nurture. I still seem to need lessons in choice and choosing.
No one can make you feel inferior without your consent. ~Eleanor Roosevelt, 'This Is My Story,' 1937
To this I add, no one can make your feel awful or wonderful, broken or complete without your complicity.
For me that means turning away from what is selfish, from what is crazy and cruel and intentionally thoughtless, what wants the argument, the warfare, what does not feed me and focusing on the generous, the open spirited, the loving that pours into my experience. To my attorney and his mother who offer wise counsel, to the Mayor of Bloomfield who cut through reams of red tape, to my contractor whose has shared in my frustration and who gleefully inquired, “How did you do that?” with a permit in hand, to my realtor who proclaims that she “remains optimistic,” to my girlfriends who listen, to Marcia and late night assurances of sanity, to Mary and tea, to Julia’s therapists who insist that my newest “plan” is not a failure as I insist but only needs a bit of tweaking, to Traci and her reminder that I “am a good mother,” and as always, to Cheshire, to Lisa, to Nick.
And explaining to my sister in an email message, I write, “I have to laugh at myself . . . ,“ I gasp a small gasp and marvel that I’ve found a way, perhaps a mere footpath of a way back to some resiliency. I’ve found with ever so much help that if I just turn around, completely 180 degrees around, there is a view of ocean with spectacular crashing waves that fill my ears with heavenly song.
19 November 2011
Morning in Maryland. We arrived late last night. Julia did a good job traveling but complained loudly that her backpack was too heavy. Usually, her backpack is reserved for the toys, books, etc., that she wants to bring with her on a trip, but winter clothes take up so much room that even limiting what we took did not keep me in one carry on bag and my backpack. So, Julia carried her shoes, some shirts, and a sweatshirt. But not for that long and the bag was not unbearably heavy. And she did not have to carry it that far. Good for those travel muscles. She was exhausted when we finally got to Lisa’s car and she napped as we road to the house. Still, she woke up to eat a little something before she went to sleep.
This morning I’ve realized that although I remembered all the clothes, toys, drugs, etc., that we need, I did not bring any school related work. And trying to find a math game on line quickly is frustrating.
Tonight. A guitar concert. Acoustic. Peter Griggs who plays classical guitar and gives some what of a history of the instrument between tunes. He sang the song from the 50’s movie Black Orpheus. I’ve always heard the song in Portuguese. A sweet love song. Sad considering the movie. Griggs with a non-singer’s wispy voice. Breathy. A guitar player’s parlor voice without projection or ego.
Julia had a coloring book and some markers. And was able to sit through the entire concert.
17 November 2011
16 November 2011
14 November 2011
I’ve had a miserable day. Maybe better to say, I’ve been miserable all day. And some bad, not terrible, awful, but sad and bad things have happened, but . . . But what? I made decisions? Yes. I have. At least one. And bad things happen and sometimes it is all in the way you look at those events that make them awful, bad, even sad. I need to start this in bullet points to get through all of it.
- (Added the morning after I published this post) Claire -- the woman I have always described as David's father's second wife -- died on Sunday morning. She was 96, and although it is rather rude to say less than glowing things about the dead -- she was not a nice woman. At all. Ever. She was more selfish than any person I have ever met. And yet, she lived 96 years. She had a loving husband who took care of her always even to his own detriment. She has a wonderful daughter and granddaughter who loved and cared for her. Essential Claire? When David was in the hospital during transplant times, I would call his father to give him the latest updates. Claire did not usually answer the phone, her hearing was very bad and she did not care to do much to ease a speaker's difficulty when they spoke to her. When Dad was out, however, she did occasionally pick up the phone. One day when I called with an update -- and they were upbeat on most days -- she answered and I asked if I could leave the update with her. She listened and then without asking a question about David, or me, or the girls or expressing any concern for us, launched into her worries that David would take a turn for the worst and that Dad would be so heart sick that he would die and she would have no one to take care of her. And she said it all sure that I would sympathize with her. Such stunning selfishness. And she lived so long and thrived. Was she the other side of the equation of how the good die young? Where is karma? What was her path? But armed with these observations, I did channel the inner Claire yesterday as I was doing what I needed to do. For me. For me.
- So, yesterday. Julia and I went to IKEA in Chicago. Two plus hours of driving and walking around a warehouse of a store that I can’t tolerate for too long. I went for folding stools that I could find no where else. Not on line, no in a store. IKEA had what I wanted. But would not ship. In store only. I check the website on Saturday night and they were in stock. But by the time I got to the store, they were gone. Or the website in not accurate. Doesn’t matter.
I was 20 minutes away from IKEA on the road home when I remembered that there were floor models of the chairs that I wanted. There were four on the floor and I only needed two. We turned around, went back, pleaded with the kitchen manager (apparently the store policy is not to sell what is on the floor), and left with the two stools that I wanted for my kitchen. But there was no feeling of victory or accomplishment. And I have no idea why not.
- The remaining work on the Bloomfield house is the masonry for the front steps, the front walk and side walk in front of the drive way, and half of the drive way. It needs to be finished before winter sets in or be done next spring. The house is on the market but the idea of buying a house without front steps is not that appealing to me. My contractor can do the work but the town of Bloomfield has one part-time inspector who works half days three days a week and we are on the bottom of his pile. I spent the morning begging, pleading, appealing to the town and my contractor spent part of his morning in the office. No go. They have 7 weeks to decide on any permit or inspection. (For comparison, my contractor in Madison had two electrical inspections done in one week, and the building guy and the plumbing guy have been at the house as well. Usually, Ed calls the town office in the morning and within a day or two the inspection is done.)
And then it dawned on me that it is November. In July, I had thought about giving up the estate work, as I was intent on giving up as much responsibility as I could for this year. The estate lawyer persuaded me to “hang on” a bit longer. See it though. But now, it may be that to do that, I will have the estate work for another 6 months or more.
Yes, of course, the house is on the market, may sell next week, and some pleading with a seller and a closing date (and something under a table somewhere??) could get this done with. But, but, but, there is no buyer right now. There is a second looker but no word at all of an offer. Even a buyer and a closing date would not insure an inspector. And who knows where that table is, let alone how to pass anything under it.
So, I made the decision to give it up. All of it. Let my brother take over the work of taking care of the estate. The lawyer was not pleased, and I dare say, neither was my brother. But why should they. More work for them. In fact, as I was explaining the work to my brother on the phone tonight, he told me the task sounded like a "piece of cake." I hope that it is. I have not found it so, but I hope that it is for him. (What kind of cake, I wonder? Certainly nothing that I would want to munch on.) And I hope that if it is easy, I get my check for my part of the estate quickly, and totally without further work.
This is not an easy decision for me. I have hated giving up on anything once I’ve committed. I have stayed on in bad plays and worked far too long at jobs that I did not like. Too responsible and too scared and ego driven to give up when I was at the end of my rope. But I am at the end now, and I am giving up. A few days ago, I wrote and thought that there was something that I had to do to break the string of bad news, bad luck that I have had with my mother’s estate. Maybe this is it. Maybe just handing it over to someone else is the lesson before the end can happen. Gosh, I hope so.
- Today, I upped the consequences for Julia at home. Although she is managing not to scratch at school, she does not feel as compelled at home. In front of me and her therapists she is fine, but give her a moment alone, and even with incredibly watchful eyes, she has moments alone, she picks off scabs and still have bloody wounds. And so, the new consequence is that for every bloody bandaid I remove at night, and for every scab that has been scratched, she will lose one dinosaur. She cried about this last night. The very idea of it. And I feel like a monster for doing it, but tonight she did not lose one dinosaur. We will see how it goes tomorrow.
- The countertop for my kitchen has not arrived as of yet and so the almost kitchen sits. Nothing to do about this either. Except feign patience. I want to move back in and move on with what I’ve planned to do. And all I can do is wait.
- I did managed to rake for the last time today. And this is really the perfect week to clean out the garage so that I can start putting the car away at night. How I love a garage in snowy weather and that is coming as well. I think I need to make a few trips to St. Vinnie’s, put away bikes, scooters and garden equipment and make space. I’ll get the snow blower tuned up when I get back from Maryland.
13 November 2011
At the Waisman Center yesterday morning for a Morning with the Experts. The topic is downs syndrome, something I know nothing about and so very good for some basic understanding. One of the studies that Waisman is doing is regarding the stress to families with kids with DS. What of Mindfulness? Interesting to see applications of the little that I know springing up all around me. I am stirred to dismiss such ideas as too easy, too evident, and excited by the possibility that I may have found something that I can bring to that rich table.
Listening to the standard introduction, Marsha Mailick Seltzer, director of the Waisman Center, gives her short history of Waisman. I now I have heard this story at least 4 or 5 times before in the past two years. I recognize all the pictures. How did I miss the fact that Dr. Waisman died at 58 just before the center opened? And I wonder how many facts, ideas, and wonderings I protected myself against last year. How much cut too close to the bone to be taken in. I felt the keen sadness of losing Dr. Waisman just before the center was opened.
A few notes for future use:
Anita Bhattacharrya, PhD. Stem cells. Embryonic stem cells. Tissue specific stem cells. Reprogramed stem cells. Research on stem cells during gestation. Synaptic communication and reduced neuron communication in embryos with DS factors.
Changing Mind Foundation?
Brad Christian, PhD, and Sigan Hartley, PhD. Studying the natural history Alzheimer’s Disease in adults with down syndrome. Brain imaging. Neuropychological profile of asystomatic adults with down syndrome. By age 65, 50% of people with DS have AD.
Interesting that the day with the experts that focuses on autism is usually so full that if you don’t do pre-registration you can’t get into the lectures. For DS that auditorium is less than half full. Not sure why.
DS society sponsors bike camp. We have to do this next time round.
The day continued in richness. I’ve just finished a week long fast -- well, 6 days, broken with a few nuts late last night after coming home from the theater. It was one of the best fasts I’ve even been on, but during the week I felt a great agitation, an impatience with the pace of stimulation in my life. Like I was moving through that jello. I was both bored and exhausted. I have slept badly during this entire week and it continued last night. My acupuncturist talked quite out of the blue of my great adventure. I have felt in the preparation mode all week -- not simply for my travels in the next few weeks but for what is coming next. “Could be, who knows . . . “ I am singing in my head.
Julia and I spent some time outside in the afternoon -- she with her bugs that are increasingly hard to find and me pruning back the garden and raking. I am finally finished with all of the garden beds and did another round of raking, although by the time I came home from the theater last night, I could see my very clean front lawn was littered with just as many leaves as I had piled neatly at the curb. I need one more raking of the back garden which I hope to get in before I leave on Friday. If not, there will be snow to contend with.
I was riding around further west last week after we had that first dusting of snow. One neighborhood had snow on their lawn and I thought how wonderful that they had all gotten rid of their leaves before the snow. Of course, then I realized that there were probably plenty of leaves beneath that clean layer of snow. Leaves to be forgotten about. Next spring’s challenge.
The season is turning. Whether or not I am ready for it. As always. As it should be. If the task is not done, if the lesson not learned during this season, it will lie in patient waiting to be picked up in the spring.
Mary and Robert responded to my call for rescue last night and stayed with Julia while I went, with my neighbor, to the theater last night. I saw The Farnsworth Invention, by Aaron Sorkin, and throughly enjoyed the experience. It made me miss theater in a way that I had not felt in years. I loved the words as well as the production. It made me think of the best of my experiences -- working in and watching theater. It made me think how much David would have enjoyed the production. His play, his talent found a good home in Madison -- The Forward Theater keeps my interest. I am hesitant to write but I feel at the moment, that I would like to do something, give some time, some energy to that endeavor.
And one last thing before our day begins -- Julia and I spent a bit more time yesterday working on math facts. I am going very, very slow but hoping that she can memorize math facts the same way she began reading by memorizing words two years ago. We worked a few weeks ago on the 0’s. First learning and then making flash cards for 0+1 up to 0+10. Then, I explained the commutative law of mathematics (Commutative law of addition: m + n = n + m. A sum isn’t changed at rearrangement of its addends.) without using those words, of course. And then she had 10 flash cards that we have been rehearsing with. She is very proud of herself for knowing these facts. Last week, we worked on the 1 +’s up to 5, and yesterday, we work on 6 through 10. We have months of work on this to do, but yesterday, for the first time, I saw a glimmer of a spark when we physically worked out 6 +1 and then 7 +1, and then she guessed at and then knew 8, 9, and 10 plus 1. She is still tentative with this discovery, but she was finding pattern and applying logic. It was a quiet time, very quiet, but extraordinary. I wanted fireworks!
Julia has had such a hard few months, and this past week, her behavior has been deteriorating. It makes me both angry at time for her, and sad to see gains and progress being seemingly destroyed. And then, we get a day like yesterday, when the leap forward blows my mind. It also makes me more convinced that to give Julia the best chance to go as far as she can educationally, she must stay in the safe and nurturing environment that she is in for an additional year. More intensive therapy and another year of fourth grade. Her teachers are concerned that she has made a place for herself in this group of kids this year, but I am feeling that she will do that again next year. Do it better. Perhaps find a bit more of a fit socially with another year.
When I spoke with her art teacher last week, she said that Julia fulfills all of the requirements for art class -- Julia meets the regular goals for that class, but just in her own way. In her own way. In her own way. The first big art project of the year came home last week -- a monochromatic self portrait done in water colors (At least I think it was water color). Julia’s picture did not make the neighborhood art show, I never saw it up on one of the school bulletin boards. Yes, like me, like always, I want that regular praise and prize for my talented girl. But what came home was this very jaunty, happy, spirited green dinosaur. An incredible self-portrait. I laughed out loud when I saw it. It was so perfect. In her own way. Indeed.
12 November 2011
We were on the go yesterday. Morning conferences.
Good news from the teachers. Julia’s reading is progressing. She is decoding better all the time. She has exceeded her IEP reading goal. She is still reading at a level 18 (just one of a number of leveled reading books). She was there last May. I find it hard to believe that she has not progressed. There is still a lot of work to do on comprehension so if they are keeping her at that level to read deeply, it is a good thing. I will ask more about it. She remains in mid-second grade in reading.
In math, they hope to finish all of the first grade work this year. She is doing a lot of counting and some simple operations still with manipulatives. She is willing and happy to do the counting work and the problems. This is all great news. Julia is learning.
Julia’s writing is somewhere in first grade, but it is very far from the strings of letters without meaning that she was doing last year at this time. She writes real words -- sometimes spelled correctly. She makes spaces between the words. She has also gotten perfect scores on every one of her spelling tests. (David would be especially proud of that. He was an excellent speller unlike Cheshire and I.) Interestingly, she does her spelling work diligently but it is not hard for her at all
She has done the map work in social studies with her class and her drawing of the map of Wisconsin from memory is really very good and included a big north-south river and a star for Madison. She has also really enjoyed the land forms work -- mountains, valleys, etc.
Julia has been working on an Iguana report which is now finished and in book form. There are multiple sentences on each of 6 pages, and each page has an excellent picture.
I had a day of indulgence -- a massage, acupuncture, and a work out at the Y. I did no work of consequence.
10 November 2011
What about teaching stillness? At our therapist team meeting on Monday, the one that Andy Paulson came to, he talked about stillness. Teaching stillness. For kids. For their therapists. For their families.
Teaching stillness. Teaching quiet.
The electricity went off in the night time. I woke up about a half hour before the alarm was supposed to go off and I felt the odd silence in the house. There is underlying noise, hums, clatters that are part of our world. Unplugging is unnerving. Teaching quiet to children who have minds deprived of strong executive functioning. The task appears a challenge beyond the possible. After months of practicing, I see how hard it is for me -- a quiet mind, meditation, I have no idea whether I am really doing it. I have gotten good at quieting the body, at least for myself. For Julia, it is still all a challenge.
Quiet the body and the mind. I use those words with her and I am sure she does not really understand. Or understands for less than a breath.
I am still reading “The Mindful Child” for tomorrow night’s lecture/discussion at church. It assumes NT kids and kids old enough to reflect on their experiences. The author assumes that even 4 year olds can respond to questions of how their body feels and how it changes after sitting silently. We sit silently and sometimes together now up to 20 minutes and at least 10 each day before school. I expect silence and we try for stillness.
Quiet in the body and the mind.
I do not ask self-reflective questions.
I am up this morning earlier than I need to be. Julia has the day off for teacher conferences. We are due in at 9:30 to talk first, to her art teacher, and then to her classroom teachers. I am going to ask about art instruction. The art teacher has not seemed to have taken an interest in Julia, has never stopped me in the halls and Julia does not bring much home from art class. I have not valued her very much; however, I’ve heard about her involvement in the school beyond art class and so I want to pick her brain. Maybe find a new ally.
At the classroom conference, I intend to raise the issue of repeating fourth grade. I also want to ask about helping in the classroom. I have not done this at Randall and it is time. I have no idea of Julia’s behavior in class. I have no idea what they absorb as the normal. I need it to inform my decisions about her school, our eventual moving (if that ever happens), and to help therapy along.
“Do you ever have fun?” One of the LEND students who are trailing Julia and I right now as part of the family mentor part of the program, asked on Saturday. “What do you do for fun?” We have fun in sips, not gulps. Fun is making the everyday and the necessities of the day -- school, therapy, meals, and bedtime -- enjoyable. Some coloring, a game of UNO, watching Dinosaur King, folding clothes together and putting them away. That is fun right now.
The Bloomfield house is on the multiple listing report this morning. It went back on the market last week and Lori had an open house last Sunday. 6 couples walked through, 1 was a neighbor, 1 was a bit interested. There are four houses in the immediate neighborhood that are for sale. That is a lot considering that this was once a neighborhood where people waited for the mere whiff that a house would be sold. Not that the house, or the neighborhood, is that special -- older homes, most in nice repair -- but the schools are good and convenient, and the NYC bus is two blocks away. If you run, you can catch a bus in six minutes from the house. And be in NYC in 20 if the traffic is light.
Our price is low but it is in line with what is being offered. Two and a half years ago, when my mother died, and we had a first buyer who eventually backed out, we had an offer for substantially more. When I was at the house, some neighbors talked to me about accepting such a low offer. There is no way I could get that now, even after hundreds of thousands of dollars in remediation and restoration that has been done.
Four houses, 6 couples, a price lower than it would have been anytime in the last 15 years. But also, to be honest, a house that needs updating in every room, an empty house that has not been lived in in two years, and a very hungry seller. Is it more than the market? Is there some soul work to be done around this issue? Is it myself or my family? And I don’t mean that everything requires soul work. Please, no! But . . . well, anything is possible.
08 November 2011
Hair cut for me today. Found a picture of Helen Mirren that I liked and asked for that cut. My cutter said, “Umm, well she does have more hair than you do but . . . “ Does everyone have more hair than I do? For a few days in the mid 70‘s, I had perfect hair for the time. Long, stick straight, and completely without body. Then those days passed. Oy. If my body was like my hair -- long, stick straight, and utterly, utterly thin -- my hair would be a perfect match. And I could still wear it long. Every man in my life has loved it long. And it is such a pain long, and frankly, I don’t look very good with very long hair. I am an old lady! I have no need for assurances that I am lovely. I just want it to be easy and presentable. And that is the challenge. So still, chin length, some layers, half bangs. Another take on what I have been getting this past year. A number of past years when I make it to the salon. The key is that I should get a cut much more regularly, instead of waiting until it looks positively ratty and the only way to handle it is to pull it back and tie it up.
The kitchen is going over budget as of now. I am holding my breath. I was aware of the possibility, and there have been too many deviations from the original plan, all small, all necessary. I will be fine in the long run of a few months, but I fall into worry much too quickly. One minute I think that Christmas will be quite frugal and the next that I will be fine.
Another question of resiliency.
I met a man today who was instrumental in putting our therapy service provider together back in 1999. He is interested in mindfulness and kids on the spectrum. Actually, he is interested in a range of ideas to enhance therapy, including diet, sleep, exercise (yoga), and mindfulness. He came to our therapy team meeting and spoke some about the possibility of a pilot program with some families. He talked about giving families tools to cope better and I heard resilience in that. What does Didion say?? Something about discovering that sanity is so shallow. Yes, the stress of autism is not simply for the person involved. That 15 minutes in the morning when I get up before Julia gets up fill me. I did not believe that anything could do that. It works. It fills my shallow trench of sanity and I grow by leaps and bound in patience and perseverance. I think prayer could work the same way, but prayer for me has always been asking for something or thanking for something. I cannot lay it all in a god’s hands. Parable of the talents, and the guy who buried his talent and could only retrieve it when it was called due was chastised. I need to be more proactive. Do for myself. Act as if it all depended upon me.
This man, Andy Paulson, seems quite the visionary. He has ideas about treating every facet of family life -- sleep, nutrition, education, relaxation, and something else. I think he is looking for guinea pigs and I think we could be a good match.
Julia has a more instances of picking and scratching -- really it is scratching at this point more than intentional picking -- at school yesterday. But she was redirected easily. Another report today again says more attempts at scratching but easily redirected. There is more healing and so more itching. There are still scabs and I am still bandaging and bandaiding at least 30 of them, but the scabs are more straight forward, not as swollen or irritated. Simple scabs that actually look like they could heal. Nothing is quick, I am viewing each day when she leaves them alone as a gift.
I have not investigated food for healing, as one commentor noted. We do eat a good deal of foods with vitamins A and C, and also with zinc. We’ve managed some of this even without a working kitchen. Now that I have my stove back and working, I will press on. I have not made bok choy in weeks! Another two weeks of kitchen work and we should be up and running. Any suggestions as to healing food would be appreciated.
Listening to Julia’s therapy -- she is downstairs with Bethany and I am in my room upstairs -- and I hear her being very difficult. She is not listening; she is not transitioning well; she drags her feet; and she turns a deaf ear on ever suggestions. Bethany is working very hard to keep the session going. I have a feeling that this is the same behavior that they are seeing in school. There is also an emergence of an antisocial bent in the kid. Not so long ago, when I or a therapist said, “say, hi to ...”, she would just greet the person as told. Yesterday, I saw she refuse to greet a little kid who greeted her and then turn to her therapist and tell her that she didn’t want to be friendly right now. I am not sure if we are coming into a new phase of behavior or if this is the effect of so much concentration on her scratching habit.
07 November 2011
I raked more leaves on Sunday and cut back another garden bed. Leaves from the biggest trees are finally falling and I collected a few huge piles. Another two sessions of raking and another bed and a half to clean and I should be done with garden chores until spring.
Putting the garden to bed. Julia is thrilled by the frost. She asked about it -- the sparkles on the leaves -- last week. Wednesday? Thursday? As if she was seeing it for the first time. How many more wonders will she see for the first time? When Julia first came home, she was so hyper-vigilant that she could not notice much of the world around her. That she could notice her parents, the dog (which she treated shamefully in fear), the food in front of her and discovered dinosaurs seemed like a miracle. The vigilance has been tamed to such an extent that it is not a noticeable part of her demeanor, and yet I wonder if it still controls her to some extent. If she is still not able to fully take in her world. I don’t know how vigilance interfaces with cognitive delays. If one if the cause or contributing factor of the other. I don’t know if I will ever know. The term -- developmental delay -- seems to imply the desire to catch up to those peers who are developmentally typical. This is what I long for, for Julia, for me as her mother. But there is a certain gift in seeing frost for the first time when you are 10 -- “Look Mommy, it lines the leaves.” A child of 3 may notice frost, may touch it and even try to eat it, but a child of 10, even a child with delays, and a child with an artist’s eye, brings a certain measure of her knowledge of her world to noticing such beauty.
Somewhat likewise to my gardening chores, I started cleaning the basement. Taking off plastic sheets, sweeping, vacuuming, and mopping the floor around the edges of the room. For all the protection of plastic, everything is filthy with dust and the pile of boxes, cabinets, etc, in the middle of the room needs dismantling and cleaning probably before, during and after unpacking. The contents of the kitchen are in the middle of that pile and I would like to be able to get to it when the kitchen is ready to unpack. Two weeks, maybe three. So, there is sorting of box types before then.
These basement piles. What is left of all the debris of our lives -- this personal history and the physical evidence that I have partially culled and sorted. My way of moving.
Moving on. Or is it moving. I hear about, read about, moving on after the death of a beloved. I did not leave this Madison house, but the renovation has forced me to pack up all of our/my belongings as if I was moving. This may have been my grand moving on, done and accomplished in the name of renovation but serving as some grand makeover, therapy, processing of grief and loss. I will be unpacking and sorting and throwing out and storing carefully throughout the winter. It is perfect work for the winter. The grand chronological file of our lives will be brought upstairs again and more will be filed according to year or special topics. I will find again David’s writing class lectures that I will put aside to read and learn from. I will sort through pictures to send to friends or relatives who might value them more than I do. I hope to arrive at spring and the beginning of day light savings time and the beginning of garden work with a lighter load. My load. The load that I will be very willing to carry with me for awhile. Maybe for the rest of my life.
And the house will be mine. I will have reclaimed the corners and fought the mountains the papers. I will have tamed the chaos. Although David would have been loathed to admit to it, he allowed his collections of papers -- some vital, some convenient, some absolute worthless -- to get far out of hand. Was it his fading energy? Did we not see how his life force was dwindling? It was not possible to examine living in that way as it is lived, but looking back I see clues, I see the labyrinthian journey to the July Monday when he died.
This work of creating order and shedding the unnecessary, does not chase David’s memory away but I will be aware of what I hold of his and him and why I do it. It will be for me and for the girls. It will just not be for him. Didion writes about being unwilling to give away her husband’s shoes, writing that he might need them when he came back. Magical thinking to be sure. It is not easy to shift from sorting for David to sorting for Cheshire and Julia and I. It is the change in perspective, the letting go of the idea that he might want his notes to come back to. David will never teach Film and the First Amendment again. The change in perspective breaks my heart but puts me on the path I need to be on. The change is my survival.
My mother and grandmother did nothing to change their lives after their partners died. Granted both were much older than I am and both had been married more than 20 years longer than I was, but when partners died, the survivors’ lives stopped. Stopping. Holding your breath and wishing to go back to life before it fell apart is more than understandable. How many months I spent in that state. How many years could I spend at that. Maybe if Julia did not demand so much of my heart and energy. Maybe if I was older or ailing. Maybe if I could no longer dream or wish or want. I am not my mother or grandmother. What is true of so much of their lives as it has influenced me -- they offer me no guidance, no inspiration by example. This survival, this rest of my life depends on my finding my own heros and then making my own way.
05 November 2011
“What is oct?” Julia asked today.
“The abbreviation for october.”
“What’s ab-bee--tion?” (multi-syllable words take practice)
“A short, fast way of writing a month.”
And then she said something about dinosaurs.
It’s all in layers today, different tracks.
Track one: (This is not in order of importance) I washed dishes in my new sink today. I don’t understand my new faucet. Ed did a temporary install of the plumbing and the sink using a piece of old countertop. He also put the stove in and I cooked tonight. I could have cooked last night but I had to remember where I had stored the pots and didn’t feel like combing the basement yesterday evening. In truth the pots were easily taken out -- yes, part of the plan -- and we had steak, zucchini, and rice tonight for supper after church. There is probably one more week of full time work and another two or three of part time work to finish the room. If I can keep the sink and stove, I will be happier than I have been.
Track two: I was miserable yesterday. I put on a coat of depression in the late morning and could not shake it until late afternoon. I have been doing way too much shopping -- almost all of it is for the kitchen, but shopping makes me crazy. Too much consumption, spending, choosing and owning. I want to be finished. I want to see the end of choosing and spending money. I am scared of all the spending even though I’ve planned for it. Irrational fear. And what else, feeling so far from an answer. Oy, wanting answers again. When I came out of it, it was like taking off a heavy winter long coat. The freedom of being away from a sadness that pressed on my soul
Track three: Julia. Of course. A week without being sent home, but church school tonight, a visit to the ladies’ room, and scabs on the back of her leg are gone. Bleeding. And scratching on one arm to reopen another sore that quickly became infected. She went to sleep last night and tonight with my holding her hands. Last night, after staying up after she went to sleep, I turned out the lights and resumed my post holding her hands. I can add sleeping watchdog to my resume.
track four: My lessons. but I am too tired. I will try writing that tomorrow.
What shook the shadow was a work out at the Y. I am learning.
Andy Rooney died yesterday. He was 92. He gave his last tv commentary in September a bit over a month ago. He loved his work and hated to leave it. During his last commentary, he said, that he'd live a life luckier than most.
"I wish I could do this forever. I can't, though," he said. What a way to live. This death reminds me that during some times in my life, I’ve said that I wanted to work until the day that I died. Work at something that I love. And right now, I don’t even have the work. Yes, yes, Julia and parenting, but I thought I meant work outside of parenting and home keeping. I am guessing that I will find the more but I can’t afford to make assumptions right now.
"Our truest responsibility to the irrationality of the world is to paint or sing or write, for only in such response do we find the truth." — Madeleine L'Engle
Someone a facebook friend of a friend provided that quote as an answer to a unenthusiastic NYT review of Didion’s Blue Nights. I am still living inside that book. If I did not have Julia, if the kitchen did not need my constant shopping every day this past week, I would have finished Blue Nights yesterday! As it is I contend myself with the time after Julia goes to sleep. That Quintana Roo, Didion’s daughter, was adopted, I knew. That she has mental health issues, I did not. The challenges and Didion writing about them hit me between the eyes.
My own view of the book is this -- Magical Thinking tried to make sense, come to an understand of the death of a beloved, of grief and mourning, of the world after life has fallen apart. It is emotion filled but works hard at the rational. Works hard to provide the path that the author travelled during her harrowing year after John’s death. Blue Nights abandons the rational. There is no map. There is no finding a new normal. There may never be finding a new joy. Where the John of Magical Thinking was vivid and frightenly alive, the Quintana of Blue Nights is a shadow as if her mother could not set her image down on the page too precisely. The pain is raw. The sentences complete as to be expected, but jagged with chards falling behind them. I think it will be a harder book to extract quotes from. Hard to take a chunk and talk about it in a reading group. Once sentence -- “Memories are what you no longer want to remember.” -- takes my breath away. Again, for me. This speaks. And I understand why I needed a year before I could begin this fallow year.
03 November 2011
I am sitting in B&N with Joan Didion’s new book beside my computer. Yes, I will pay full price for it -- well, minus 20% since books are rarely at full, full price anymore. I read the last page and teared up. This woman speaks to me. I am trying not to swallow it whole but I can’t wait for Julia to fall asleep tonight so I can dive in. But after I finish writing this, I should go to the Y and work out before getting Julia for riding lessons. I can do all of that if I don’t let myself get lost in Didion.
Oh, how I have missed being so excited about a book. I feel rich with the contemplation of a good read.
Julia: Three days and she has not been sent home once. It is impressive. She has picked up a few tic -- tic may not be the right word, but I am using it quite colloquially. She rubs her thumb and index finger together. She likes to do it in front of her face. Noticeable to be sure and another habit to extinguish, but it is not hurting her body. All in time, or at least we will attempt some modification when the scratching/picking has calmed down.
Julia’s two aides met me at the school door today very excited. I pick her up on Thursdays to go to attachment therapy before the end of the school day. Julia had worked on a name poem for a classmate and did it with help. What was so exciting was that she also drew a picture of the classmate and herself at the bottom of the page and the picture was of two kids. Kids, not dinosaurs! Julia has been drawing humans at home and with Marilyn but has not done it in school before this. So, is school becoming a safe place? I sure hope so.
I pick up the book beside me, read a random paragraph and hastily put it down. I must finish what I am doing and get to the Y.
While cataloguing the blog entries for 2008, I came across one that mentioned Julia’s questioning me -- Mommy, are you angry? Mommy, are you frustrated? Mommy, are you . . . I wrote how thrilling it was that she was actually aware enough to think that I possessed these feelings. That feelings were my province as well as hers. I had to laugh out loud. This is the same behavior that drives me crazy these days! She asks in the middle of being corrected or reprimanded or cleaning up the mess she had made. She asks when she should be concentrating on the task as hand. The moral here simply being that today progress is tomorrow’s worst habit!
This morning Julia came out on the front deck and slid her feet around on the wet wood. “Mommy, its slippery. Is it ice? Is it winter? Is winter coming?” Look, look, see here! Julia has future. Julia knows a season. Julia expects the change in the weather. Julia remembers what winter has looked like in previous years. All of this wonderful.
The electrician made his second, and hopefully last, visit today to install plugs and lights and outlets. One box needs to be moved which means a new cut in the drywall, but it is behind a cabinet. The shelves are being installed, the lower cabinets mounted, the range hood was going up as I left home at noon. There is a possibility that I could have a stove this weekend if I really wanted it. I will post some pictures in the house blog.
My cell phone, my only phone is dying. The phone itself works fine but the battery is no longer holding a charge consistently. It is only about 18 months old but I qualify for the trade in discount. I am eyeing and iphone but I’ve never bought a new phone. I’ve always taken the cheapest one that did what I needed. And the renovation is making me watch my pennies, let alone by $100’s. I will wait a bit but right now I am a bit pissed that I cannot text Cheshire.
Ok, time for the gym. Time to do what I must to put another check on my daily task list.