30 January 2012

When we are angry we are blind to reality. Anger may bring us a temporary burst of energy, but that energy is blind and it blocks the part of our brain that distinguishes right from wrong. To deal with our problems, we need to be practical and realistic. If we are to be realistic, we need to use our human intelligence properly, which means we need a calm mind. - Dalai Lama on facebook this morning.

How do I teach this to Julia? How do I practice this myself?

My dear friend, Sharyn, asked how Julia’s skin condition was doing. I did not realize that I had not written about it in a few days. I feel like it is all that I write about. Julia is getting better, albeit very slowly. She goes to school with less than 5 bandaids plus one bandage on her right wrist which covers five sores that are close together. Her wrist has the greatest number of active sores which are close together and when they erupt during their most itchy time, they are hard to resist scratching. I bandaid one and bandage the wrist. These sores show no sign of healing. The go through the cycle of eruption and calming down about every two weeks but even when they are calm, they do not look like they are closing up. There is another month before we can see the doctor again. I am hoping for healing because I don’t really know what else the doctor can recommend doing. There is just one sore on Julia’s left arm and a very few on her left leg. On her right leg, there are still many sores but a good number are in various healing states. There are a few on her trunk and on her butt. Some of these itch at times but there are few enough in any one place that Julia can either control her scratching or ask for help. She is not always good at asking for help but she is getting better.

I’ve resumed working on first time listening with Julia. We did some last summer but it seemed impossible to work on when there was so much itching going on. When I ask Julia to do something, i expect it done the first time. If she does not immediately stop what she is doing and answer me, i make her stand in front of me, look me in the eyes, and repeat what I’ve told her. When she repeats what I asked -- which can take awhile because she had not listened or does not remember -- I ask when it should be done. The right answer to that question is “The first time” or “now.” And then she does what I’ve asked. Sometimes she gets angry at me, especially when she is engaged in something she likes to do but it is important that she learns this for two reasons. First, it forces her out of her own world. To the extent that she is disassociating or that she is over-focused on what she is doing, she must learn to be attentive to the world around her. Second, I am demanding that I be the most important person in her life and that i must be listened to and obeyed without question. This is the attachment piece of learning how important mother is. Children who depend on their mothers when they are infants don’t need this lesson, they know how important mother is because they have experience that care even in their earliest years. Julia did not get such care and needs to get the lesson inside of her.

We go through the exercise whenever she does not listen and obey, wherever we are. Her line therapists do a similar exercise, more for the first reason then the second. It is slow going and will take a long time, but we chip away at the resistance as well as the lack of concern that she exhibits. There is a part of her that wants to please me and her therapists and we tap more and more into that part.

I worked on a new work book for Julia today. Last year, Marilyn worked with Me and My Volcano with Julia and this fall, we started with an adoption workbook. However, the adoption workbook explores orphanage life very briefly since it seems to be most geared to child who were in foster care or multiple placement in their family. So, we’ve been talking about a workbook that would be very specific to Julia, telling her story as much as we know it and filling in some of the gaps with appropriate guesses. It was good to work on today but it is a very sad book and had me close to tears all day. I’ve sent the first draft to Marilyn to get her feedback. I am excited that Julia is actually ready for this step. We have been building to this point for a pretty long time. Julia has some of the vocabulary to described and understand her feeling, especially of anger, fear, and sadness. She has been somewhat ready to confront some hard issues and I am interested to get Marilyn’s feedback and to get started. There is an introduction that tells Julia how to use the book. Each page will have the paragraph of story at the top, a space for drawing, and then three lines at the bottom for writing. The basically apes the format of the other two workbooks. It is a format that Julia really embraces. I am anxious to get started.

29 January 2012

Yesterday, I was at the Waisman Center for A Day with the Experts: Autism. Presentation of research findings and ideas. This is the third time I’ve come to this yearly event. A few faces are familiar, a few of the organizers smile or wave, but I did not spot anyone who I knew until the end of lunch time. Lots of students but lots of parents and professionals as well. The autism world, even in this small place, is so much larger than I have experienced.

I glean bits and pieces, looking for some that I can make use of, some practical ideas because no matter how theoretical the ideas presented at Waisman are, there is at least some, and possible a lot, of evidence to back it up. The amount of evidence necessary to promote a therapeutic tool into the evidence based category is so expansive that so many therapies and therapy tools never make it into that esteemed category. Anecdotal evidence is not sufficient. I chafe at times under those qualifications but what comes out of the research community at Waisman is vetted.

Brain imaging: Data, a few conclusions, and projections of where to look next. Brains on autism are different. The long distance connections between different areas of the brain are fewer and not as strong as NTs. Interesting. Intense use or exercise of the corpus callosum and also activities that demand that both sides of the brain be used may increase long range connections. Good long range connection is necessary for quick verbal response, among many other things. Now, where to go with it?

Transitioning together: Data shows that parents with kids with ASD are more stressed throughout the life of their child. Umm, knew that one, but some interesting information about social groups for teens and their value. Adolescence and adulthood are not easy on those with ADS or the families.

I heard some conversations as I sat quietly waiting for the day to begin and for lectures to resume after lunch. A few parents and an elementary teacher complained that there was nothing there for them. I thought to turn around and tell them that there is but that they must decode the reports on the research for themselves. This is not a how to conference but a report on the recent research before or just after it is published. I understand the frustration -- I feel it often -- and I understand the intense desire for any kind of direct answer that will help their child, their students, but that is not available. In a great sense, we are privileged to be invited into the refined, scientific air of the Waisman Center. The could keep it all to themselves and let people like me hear about the “latest research” years after it is published when it is filtered down to us and translated by therapists or school experts. They allow us in, and will answer questions if we can figure out how to ask them, but it is up to us to strain towards understanding.

It has been nagging at me that Julia has been on the same reading level for almost the entire school year. She can decode at a higher level, but she does not have sufficient comprehension skills to progress higher. She cannot answer those wh- questions about what she reads. Granted she did go from zero to mid-second grade last school year, and maybe it is just that the comprehension piece has to catch up to her decoding and that will take time. But there is also the worry wondering if this is a plateau which she will stay at for a long time, so long that forward movement stops. Her reading teacher, who passionately loves Julia, told me that she was doing some reading at a higher level with Julia so that she learns more vocabulary. She is reading non-fiction books with Julia and sends them home after Julia reads through them twice. She wanted to check whether I was re-reading these books with Julia to make sure she understood all of the words and to question Julia after each page about the material on that page. The books are copied and stapled and any pictures are black and white. Julia loves to color these books as well as read them. I pick them up now and again to read but have not made an effort to highlight them. From now on, I will and will encourage our therapists to do the same. This is also good material to take words from to make the word search and crossword puzzles. I spent some time doing that yesterday and came up with pretty huge puzzles. I think I will make some simpler puzzles to start with and we’ll work towards the large puzzles I came up with yesterday. Julia is fascinated with both word search and crossword puzzles. Last week, she found a NY Times crossword book that I had gotten David for a Christmas gift and that he began using before his health and energy began to decline. She wanted to do one of the puzzles with her therapist. Imagine, Julia doing a NY Times crossword puzzle! Well, not this year, but who knows. She has such a will. I was going to send that book to Lisa who loves crossword puzzles, but I wonder if I should keep it for some future Christmas. Can I dream of a day when it would be an appropriate gift? So sweet it could be, a few of the puzzles done by her daddy?

Last week, the book that was sent home was about prairie dogs, this week’s about whales. “Mommy, a baby whale is a calf and it stays by its mother for a long time.” Like you, I thought to add. The book is 40 pages long and contains over 1,000 words. Progress is slow but remarkable. The future is scary, to me at least. When I go to conferences like the one I went to today and hear about adult living situations, loss of ability after high school, and lack of appropriate employment opportunities, I go cold inside. But then I come home and make a 25-clue crossword puzzle that I am almost sure we can work up to in a month, and I am buoyed up with dreams of ability and accomplishment. The reality lies somewhere between. I need to hear and feel both to keep the challenge going.

The reading teacher who is one of Julia’s aides during the day, also told me that she did not agree with the consequence of sending Julia home if she picked or scratched at her sores three times. She didn’t think it would work, and she thought it was a cruel consequence for Julia who sincerely loves school. I understand her concern and her reaction. I felt the same way at first, and it did feel like a sort of tough love exercise. It may have been. But it also was the best and maybe only way to get Julia’s attention, and the attention was what we needed to get her to control the behavior which hurt her body. I don’t know if what I said, even the very successful result of our behavior plan, changed this teacher’s mind.

As I listened to her, I also was observing myself. At one time, not so long ago, the implicit criticism that this teacher was offering up would have been hard for me to hear. I would have seriously doubted myself, but in this situation I felt that even if the behavioral program did not work that I was doing what was most appropriate and best for Julia. As I listen to the experts talk about the difficulties of adolescents and adults with ASD, I don’t wonder if this new found decisiveness will come in handy in the future. The weight of responsibility is not easy to take up. I always carried it, especially for Julia. Oh, and there are those who laugh at me when I say that parenting Cheshire was a matter of letting her do what she wanted to do. I mean, I mean. I was responsible for Cheshire, but she was ready to take on small bits of responsibility, like what instrument to play, very early in her life. Responsibility for Cheshire was shared among the three of us with Cheshire always longing to make more decisions and David and I dolling responsibility out little by little until she was able to do it for herself. Julia is that fourth child at the Passover Seder table, the one who doesn’t even know how to ask the questions. The Hagaddah says that it is the adults’ responsibility to respond to each of the four types of children in ways that bring them into the greater community. What is the response to the silent child?

Experts say that it is the parent who knows their child the best and so, the parent must have an active role in any therapy, education plan, medical plan for their child. But knowing “best” is an awesome responsibility and I, for one, knew early the depth of my lack of expertise and knowledge. I wanted experts to tell me what to do and many of them turned the question on me, on us. I understand in my gut the feeling of overwhelm and loneliness of parents who feel that what is “best” for their child is completely out of their realm. The learning curve is steep and the learning is slow and arduous. Parents are blamed for falling off that curve and giving up for one reason or another. But it is hard, very hard, and anyone one with children who have typical journeys from childhood to adulthood have no idea at all. I know, I had no idea.

I don’t know if I can ever explain what it feels like to have responsibility for another person who does not strongly desire to assume that responsibility for themselves. I don’t know if I can ever explain it in such a way as to make those not a parent in this circumstance understand. But if I could do that, if anyone could do that, there would be change.

The ideas in these over written and much too long paragraphs fill me with such emotion. I am almost in tears, not quite understanding the reason. I can almost touch some conclusion. Almost. I am not there. Not yet.

28 January 2012

I grazed among my tasks for most of the day. Finally, beginning to unpack a box with thoughts of tackling more. I worked on the memoir -- easy work, formatting of pages and pages of blogging. And I picked up a book from last year and read a few chapters about one researcher’s experiments on monkeys (the work on animals is very hard for me to read.) to prove the plasticity of the brain. I lost myself in each task and could have spent the day doing each but the practicalities of the day and my own restlessness did not allow for that. I chaffed with the idea that I was not using my time efficiently, that I was flitting among my interests and tasks and not settling down to efficiently complete any one of them.

In the late afternoon while Julia was working with a therapist, I used the I Ching. I do not throw coins or yarrow sticks, instead I just asked my question and opened the book at random and read the paragraph under my finger. A great, old teacher of mine, Wilford Leach, who died of AIDS when it almost did not have a name, who, although I thought of as old, died at 58, which I now think of as . . . well, now, not old, just living, but two years older than David. Young almost. Will was so wise, but never got to be venerable. Anyway, Will told me about the I Ching. He did it in some master class, it was not a personal message. I wonder how many of us, his students, took everything he said as a personal message. He was that kind of a teacher. He told us about I Ching, that it always gave a correct answer to petty questions and those from the bottoms of our souls, and that it always gave the answer that the asker already knew. That if we were able, we could get the answer to our question looking deep inside, but as that was hard, maybe impossible for some of us, and we could use the I Ching.

I have used it now and again since that time, most of the time alone, sometimes with friends. Lisa gave me an excellent, newer translation of it by Carol Anthony and Hanna Moog which I slog through now and then, but often ask a question and open the book for an answer. Strangely, amazingly, almost magically, although I know it is none of those and I now expect that there will be an answer to what I ask.

And so, I asked for guidance for the immediate future. Where to put my energy and effort with the varied tasks that I have set for myself. I wanted to know exactly which task would bring me efficiently to some answer, some resolve, some enlightenment, some ending of this fallow year which is not even half over. And I opened the book, and put my finger on this paragraph:

“‘Plowing and clearing the ground’ refers to the inner undertakings that return a person to his original nature, allowing it more and more to express itself in its uniqueness. These undertakings consist in identifying and deprogramming prejudices, pre-structured views, and mistaken beliefs. The ground is not to be prepared for the planting of “good seeds,” as is done in positive thinking or imaging, or by introducing another belief system. Preparing the ground for peace, for example, does not mean praying for peace, as this would bypass seeking out and deprogramming the mistaken beliefs that foment and perpetuate war.

“Receiving this line counsels a person to examine his attitude toward his goal (the harvest), and to free it from any projection or spell put upon it by his egotistical demands.” (p. 237).”

The immediate reference to the land, the preparing of the ground, and the final direction to free myself from egotistical demands all made me smile. The answer was, of course, that there is no short cut in my fallow year, no way to get to the answer, the enlightenment, without the entire path being walked.

To myself, I whined for a bit about all of those friends and strangers who seemed to have found their direction, their guidance, their research project without so much of a process, but I didn’t even bother asking the I Ching about that one. I know what the answer is.

And I had a dream. I have been dreaming and remembering more frequently these days. Not every night, but many nights. I am enjoying this getting back to my sleep life. I actually decided on the shape of the light that I will buy for the dining room after one night’s dreaming. Surprising for me now a days, but quite the normal way to arrive at decisions in my younger years.

But last night, I dreamed of David’s voice. He told me that we, meaning everyone else except for him, had died, intimating that he was lonely, missing us all. I began to awaken and thought for a minute that, yes, we had all died, leaving him alone. Here and alone. But then I questioned who this “we” was. Me? Me and Julia? Me and Julia and Cheshire and Lisa and Nick and Jan and the list of friends and relatives and acquaintances and co-workers trailed on inside my head. No, it could not have been “us”, all of us who died, it was him. And I wonder about whether the dead, in the afterlife, not matter how heavenly, miss us, feel lonely. And I realized (although this is not quite the right word) that even if heaven was all learning and fulfillment (both of which would be ultimate joy to me) that David might still miss us and feel lonely because of that.

This was an instant thought, not pondered over. I was still mostly asleep and raised my head and turned to the bed stand as if to look at the clock (a movement which is almost instinctive with me) and there in shadow was David holding a bowl. It did not scare me or cause even an extra heart beat. I just accepted that he had been there, a bit lonely and wanting me to know that. I also accepted that what I saw was some shadow of furniture together with my night light (although a bit later when I was more fully awake and turned again to look for that combinations of shadows, I could not re-create what I had seen.). There was an ache in my shoulder, something very unusual for me in the morning, but an ache the kind of which I got now and then when I laid on my side in the crook of David’s arm for much too long a night.

I am not going to try to make sense of any of this. It is what it is -- some heavenly visitation, some part of me comforting another part, something from the outside, something from the inside. It does not matter. So, now, awake and typing, I send my love out to him who may be lonely because he has gone ahead, and maybe it is not ahead, but just away and not here. And that I am on some path, with tasks that he is not a part of and he is missing being included in my adventures. In the adventures of the “we” who are still here.

27 January 2012

I have just a few minutes before Julia needs to wake up for school. I have been going to bed with her in the evening, doing something on the computer when she falls asleep, and quickly going to sleep myself. So, it is true, early to bed, early to rise. Waking before 6 is easier and I have the energy to keep going throughout the day, but climbing into bed at a few minutes before 8 each night as we do to read before lights out, makes me feel like I am missing something. What? I have no idea.

Julia read her poem yesterday in front of her whole class plus a smattering of parents. She was the second one, chosen at random, to read her poem. She was scared and she missed some words, but she tried very hard to read with expression and she was very pleased to be clapped and snapped at when she finished. The kids learned that snapping fingers was a hip poetry thing from the 50‘s. Ancient history. When we got home from the clinic later last night and were walking the dog, I asked Julia about her experience. This is always a hard kind of conversation to have with Julia but we muddled through after I insisted on talking about the poetry reading a few times. Julia told me that she was a bit scared but that it was easy and really fun to get up and read her poem. Truly, that was what it looked like by the end of her reading. She gained more confidence as she read through her poem and the last few lines were done almost as well as she had done it for me the night before. Ah, those acting genes. . . wait, she doesn’t have my acting genes. Must be something in the very air we breathe.

I am a bit anxious to get on with the sorting. And good that I am feeling this way. I brought the sorted plastic boxes up to the dining room a few weeks ago now, and have not touched them since. Not good. Not good at all. Tuesday, when Ed was installing the last cabinet and mucking around in the basement, he noted that it was really clearing out. Well, yes, it looks cleared out because there are plastic storage boxes in the dining room but more dramatically, all the boxes of kitchen stuff have been put away. With the gaping hole in the middle of the basement where the kitchen boxes stood staring at me in the basement, I have had no inclination to investigate the periphery where much that is unsorted and/or long-stored stuff awaits. I am imagining that it is the tougher stuff to sort. What am I going to do with a box of old sheet music? It doesn’t make sense to save it but I hate getting rid of it. Why? Because . . . no good reason. Just because I’ve packed it up, probably most of it before law school, and carried it around ever since. Does Half Price Books take sheet music? It helped me to get rid of books taking them there. Not that there is any great money to be made selling to the store, but I know those books, some of which were very good books just not ones I was interested in, would find someone to buy them. I wonder if I could find a needy lounge singer in need of sheet music?

Julia has been put on the bus and I am drinking tea, eating my banana muffin and tapping away.

Yesterday, I tried writing a bit of fiction. I’ve had this fragment of a story cursing through my veins for a few weeks now. I’ve always had pieces of stories rumbling around inside of me. I go over the story to get myself to sleep. I day dream about it. Sometimes, I night dream about them. But when I write them down. Uck! I am clumsy and obvious and obtuse. Stories come out nothing at all like I imagined. And yet, here I write without pause. Like turning on a tap. Now, I am not saying that I am any Samuel Pepys, but this is easy and for once in my life, I am going to go with easy, and leave the impossibly difficult to someone else.

I’ve been messaging while I’ve been writing here with a friend and a sister, both of who, I just now realize, have changed their lives drastically in the last year or so. Both have done so a bit more of their own accord that I have, but I see that I have gathered around me some fellow travelers in change.

One describes a coming storm that looks to her list the start of creation. The other has drawn out in me what I’ve learned so far in this fallow year: patience and doing what comes naturally. I write: It is a delicate balance of moving on or forward and considering the lessons learned. I tend to tip in one direction or the other, the middle path, walking in the middle of the river is the challenge. Okay, so that sounds rather wise. Maybe I am learning.

26 January 2012

Finished kitchen pictures can be found here: http://acrosstherubricon.blogspot.com/. Big check mark on my to-do list for this fallow year.

Julia’s class is having a poetry reading this afternoon. Julia was not expected to participate but she has been doing some of the writing prompts that that rest of the class has been working on and she wanted to read one of her “poems” just like the rest of the kids. I needed to do a quick rearrangement of our time, since Thursdays I usually take her out of school at 1:30 for attachment therapy, but all is done and I can’t wait to see her read with the rest of her class. Just before Christmas, I went into school and Julia read her favorite Chanukah book to the class. She did it quite by herself and she was very proud of herself. This is a new challenge since there will be lots of parents in attendance. Being like the other kids is such a strong motivating factor for Julia. She is so very lucky that she is fully integrated into a regular ed classroom. I think she would have a very different school experience if she was in a dedicated special ed classroom.

This is what she is reading today. This starts with the prompt, “I feel ___ when” with the blank filled in with a feeling. The students then filled in the space after the “when.” This is what Julia did:

I feel.

I feel happy when I play and draw pictures.

I feel sad when my mom leaves.

I feel shy when I’m afraid to talk to people.

I feel excited when I get a surprise.

I feel sorry when I hit someone. I better say Sorry!

I feel proud when I do good work.

I feel embarrassed when I fell on the floor.

I feel angry when I do not want to share.

I feel guilty when I make mom so mad.

I feel surprised when I won the surprise.

I feel afraid when I am by dogs.

I feel impatient when I’m waiting in line.

I feel jealous when I’m jealous of you, mom.

I feel hopeful when I’m nice to someone.

I feel confused when I get a little frustrated.

I feel hurt when someone hurts me.

I feel loved when I kiss my mom at home.

I feel.

I showed this to our therapy team and I will share it with Marilyn tomorrow. This is not only a poem but proof positive that Julia has learned a good deal about feelings. We all knew she was identifying feeling for awhile now but she was not connecting them with a reason. Some of her reasons in her poem are not the best choice, and a few are inappropriate but for the most part, they are dead on. This is a step towards reciprocal interaction. We have been practicing this at home and she reads it with such enthusiasm and feeling.

I had a meeting with our IDS psychologist who is the head of our therapy team. The next big goal involves teaching Julia more about conversation and interaction. Julia will have limited conversations; however, the conversation is on her terms. Asking her about something she is not interest at the moment or trying to change the conversation from her interest to your interest is near impossible. She insists on her topic (which inevitably gets around to dinosaurs and who is eating who, especially when she is feeling stressed) and pays no attention to yours. She will ask questions but they are usually not helpful to continuing the conversation in depth, but rather the questions check how the person she is talking to is feeling. She does not really check on that person’s face to see if she can figure out how they are feeling. She will ask, “are you angry?,” “are you frustrated,” “is that right?,” etc. And she will ask it over and over. This is, at the least annoying and stops any forward movement of the conversation dead in its tracks. And although a grownup, especially a professional grownup (teacher, therapist, etc.) will engage with Julia further, many kids just give up and move on.

So, for Julia conversation is for finding out what she wants to know or telling you what she knows. It is not for building interaction and fostering friendship.

John Elder Robinson, author of “look me in the eye”, “got it” when he was 9. Up to that time, he explains that her was so used to living in his own world that he answered a conversation starter or a question with whatever he had been thinking at that moment. He was responding which in his mind should have indicated that he had been listening, but his response made no sense to the person speaking to him. He says, “I suddenly realized that when a kid said, “Look at my Tonka truck,” he expected an answer that made sense in the context of what he had said.”

When I first read Robinson’s book, Julia was so far from even responding to other people that his nine year old revelation seemed impossible. I still don’t really know how it is going to happen, or how to guide her to this revelation, but WOW, if she got it, it would change her world. And amazingly, this is a next step for Julia. Not an easy one. And I expect, not a quick one. Huge, slow step, but still it is next.

Julia has learned to greet her therapists and say good bye to them when they leave. She has learned to ask them how they are when they come, and even sometimes to remember something about them. “How is your brother?” “Is your car fixed?” She has learned to ask when they will come back, and then will say, “So, see you on Tuesday.” She is generalizing some of this to school. This seemed almost impossible a year ago. And so, we teach her more.

Oh, how much that child would enjoy really talking to another kid! I know that she would. Now, just to convince her that I/we have the keys to that kingdom, that if she follows our lead, she can make peer friends.

24 January 2012

I finally found a use for pinterest (and I’ll send an invitation to anyone who has not tried it). I mean, it is fun to scan through thousands of pictures and pick favorites. An incredibly fun time waster -- an I am not in any way a shopper! But what a great tool for gathering ideas and comparing products found all over the web. I am looking for a dining room “chandelier.” I put the quotes around the word because the word still conjures up the crystal dripping lights that my mother loved. I have nothing against crystal fanciness, but this little house just could not support such a fantasy.

The original plan was to put the Delft chandelier from David’s father’s house in our dining room when Dad sold the house. It was a smallish chandelier, very plain and in fall colors, not the traditional Delft blue, that David’s mother carried back from Holland when they travelled on vacation. David always wanted the chandelier one day and although I was not an immediate fan, I planned every dining room that we’ve lived in, growing used to the idea as we went from house to house -- yes, that is how long David’s father had been “threatening” to sell his Jersey house. We were only getting the chandelier once the house was sold. But this summer when the house was sold after Dad died, no one mentioned to the selling agent that there was family that wanted the chandelier and it was sold with the house.

And right now, in my dining room there is a very useful ceiling fan with four ugly spot lights hanging off of it. The identical light is in the kitchen and the living room. Removing the spot lights in the kitchen improved the look of the fan. I need some general light in the living room and so will look for another fixture to attach to the fan, but in the dining room, I want just some other kind of light. Something pretty. And that is where pinterest comes in.

I have been looking all over the web for an interesting and affordable chandelier and as I find ideas (which tend to be either interesting OR affordable), I can “pin” them to one of my boards. (I am not going to try to explain the site, but check out pinterest.com if you want to add a new addiction to your list.) Now, I have a host of lights to look at together.

Usefulness, efficiency, and addicting - - - maybe not so bad.

Ed came by today and put in the last cabinet. The kitchen is finished! I will post pictures in the Home blog.

Yesterday was lovely. Lisa called, as did Marcia and Cheshire. Many friends wished me happy’s on face book. Amy dropped off a little cake from Whole Foods and somehow that little cake is going to last all week. It is a tall little cake. And delicious. Julia is getting to be more and more and more a cake eater. Last week, carrot. This week, chocolate. And Amy dropped off a very cute cook book holder which is actually my first decoration for the kitchen. Finally, Mary and Robert took me to dinner. A sitter put Julia to bed. What a nice birthday. And yet, to have a good time, a good day, I need to lean heavily on my village. A whole village’s worth of people to make up for the attention of a single partner. But then again, thank goodness, for that village. How would I survive without it?

23 January 2012

My own new year. Chinese New Year. Cheshire’s first day of NYU for her Masters of Social Work. A very auspicious day indeed.

Cheshire’s enthusiasm about her new venture, about returning to school, about her life as she is living it now is palpable. It is infectious and just a little bit of it catches me up as I talk to her. I am in deep envy. I long for such enthusiasm myself, but I am in the middle where she has found an end and a beginning. I know. I know. Patience and steadfast work are the keys. Both are a challenge but both are within my own possibilities.

I am impatient to see what lies ahead. So impatient. I want to peek around the corner and must be content to know that today is what I have and what I can do.

My New Year’s cards are all sent. A few recipients have emailed to me their thanks and so I know they are getting where they should. The message on the back of the card has become David’s last message to me, and from me to my friends.

“Just suppose you are now doing and have been doing for quite a while exactly what it is you are supposed to be doing.”

It is from his final theater piece, “An Evening with Jon Jones,” finished in June of 2010 and performed last February as part of Forward Theater’s monologue festival. I should have it embroidered on a pillow or stenciled on the wall. It was Jim Jones’ message, and it took Jon and David and I so long to understand it. In the piece, Jon grows to understand it, and although I really don’t know if Jon really understood it, I feel that David felt the wisdom of the sentiment deeply. I struggle with the now, have gotten close to it time and again, have run smack up against it on occasion.

Part of this new year and my fallow year is a dedication of my soul to the now. Every teacher I have right now urges me on.

22 January 2012

Chinese New Year party with MFCC

A pause during decorating.
Arts & Crafts
Julia in shadow.
My own spicy dragon at the beginning of the year of the dragon.

So we went to the Chinese New Year party and both of us had a tough social time. It was one of those days that it was impossible for me to talk to anyone -- could have really used someone who was so wrapped up in themselves that they talked to me non-stop without asking a single question. Unfortunately, I did not bump into that person.

I did chat with two people I know from school, but I was awkward and felt like I was running out of things to say, questions to ask. There was a time when I was this way all the time. It was my brand of being shy. It was not that I didn’t want to meet and talk to people, but I had no idea of what to say. More importantly, what to ask. With David, who was also not a party animal, we hung together. We were an insular whole. We did not make new friends when we went on vacation; we could live without neighbors.

Slowly, I changed, never becoming a brilliant conversationalist but I could be very friendly. I could talk to people almost anywhere and be very presentable. And although parties where I and/or we knew no one could still be a challenge, I seemed to be past my very awkward stage.

And I would say that I’ve been pushed back or entered a new phase of awkward. Nothing to say. No questions come to mind. I am forced and strained. I do not keep up with current events. I have no job to talk or complain about. Fallow year activities do not yield interesting anecdotes. At least, not right now. I do hope this passes and that I find my friendly bones again, but for now, I have no choice but to dig in and be the lone stranger who wanders a cocktail party looking for all the world like they wish the earth would swallow them whole.

As for Julia, well, she is my partner in awkwardness although hers takes a completely different form. As we approached the high school where the party was to be held, I tell her to be friendly, to pay attention and answer questions when other people ask. We go over her basic facts: name, age, where we live, what school she goes to, what grade she is in, and the name of her teacher. And we rehearse, “Happy New Year.”

The school was laid out with a central plaza/cafeteria/gathering place right inside of the front door. We went early to help with decorations and as soon as Julia entered the building she spotted a basketball team sitting on the steps down to the plaza. “Hello, boys!” She called. “Happy New Year! My name is Julia.” They were all very amused. Oh, well, awkward in a whole new way.

Julia is trying to socialize, but she does it with statements, not questions. At the arts & crafts tables, she creates cool stuff and then asks the person next to her if they life her work. Some grownups accommodate her. Some get it immediately and draw her out a bit. Usually, until she turns her attention elsewhere, which tends to be when the grownup wants to take a turn at asking a question or saying an original thought. Some let her stay on her topic which inevitably gets to dinosaurs. Some just look confused. Kids are not as kind. But Julia tries. She tries all the time. It will not be easy for her to learn to socialize but if she wants friends enough, she will learn it.

We both need to practice asking questions. Ummm . . .

And so mother with no questions and daughter with few interests decorated before the crowd arrived. Julia is getting better at staying on task when I give her a task. She tied ribbon around balloons and then tied the balloons around railings for about 35 minutes. I had to remind her at times to stay on task and she was slow at it, but I don’t know if she was slower than any other 11 year old, and truth be told, no other kid was there helping with decorations.

Julia wore ear plugs so that she could stand the loud music the accompanied the dance groups -- little girls in pretty costumes fluttering about an open space -- and the lion dancers which was a mix of adults and kids from a karate club in town. Julia knew one of the lion dancers who was the head of one of the fierce lions. She was so happy to put her red envelop in that lion’s mouth. Julia spent most of the performance on my lap which is always fine with me, but of course, if more appropriate for a 5 or six year old than for an 11 year old.

There is some ego stuff working, and some mama bear protection, but we went, we hung out, we did crafts and we fed the dancing lions for good luck.

Happy year of the dragon!

21 January 2012

It is a blue-sky-bright-sun day in Madison, the kind of day that follows a heavy snow storm and frankly, it is quite a saving grace of the intense cold the finds every crack and crevice in an old house. Yesterday, during the afternoon and evening storm, I pulled down all of the shades to hold in the heat and keep up the cold, but this morning, cold or not, shades are up and the sun is pouring in.

It is cold. I went out and blew snow and salted walkways and the driveway. Julia and I are going to celebrate Chinese New Year this afternoon with our local FCC -- Families with Chinese Children. It is a group that I have felt not fully comfortable with from time to time. Most of the kids were adopted as babies and the kids Julia’s age are fundamentally American kids. There are very few kids with disabilities of any sort and I have felt an undercurrent of distain for Julia’s challenges. I fully acknowledge that it may be mostly me, a bit of paranoia, a bit of shyness, and so, we will try again. The woman who is running the group now goes to my church and we’ve talked often. I have volunteered us to decorate before the party -- give me a task and I will make myself at home. And I am pretty good at setting up almost anything. Julia has a dragon shirt that Santa brought her and she asked for “Chinese hair,” which is such a throw back to our early days together. She wanted her hair done up and with ribbons and decorations. She was speaking very limited English but she told me that girls with fancy hair had mothers, and she wanted to look like she had a mother. I wonder where she saw that -- it was somewhere in China because she had not been home long enough to see girls with “fancy hair” here, and what she wanted was little buns with as many decorations on them as could be fit. Hair spray is essential for this endeavor and patience in the bathroom as I fumble around with elastics and pins. Julia has always had the patience to let me spend as much times a necessary, even in those tough early days.

Hopefully, there will be pictures.

The other day when Julia and I were doing our morning strong sitting, she turned to me and said, “I am bored.” When I said my usual, “Quiet in body and mind,” she muttered to herself, “This is so boring.” I wanted to giggle, I wanted to hug her. Such an appropriate reaction to meditation! We have been sitting for 15 minutes every morning before the school bus comes since the beginning of the school year. Julia has shown her monkey mind and monkey body, but she has never told me that she was bored. Of course! We are all bored during meditation sometimes. Maybe she is getting closer to meditation than I thought. I assumed that she was filling her mind with dinosaur stories as we sat there together, maybe she is listening to me and quieting her mind. I do wish I had someone to call and ask what I should do for and with her now.

When the student is ready . . . maybe we are ready . . .

20 January 2012

I went to Julia’s annual IEP meeting. IEP is Individual Education Plan which is done yearly for kids who receive special education. This is my fourth meeting and after each one, I am always ready do fall on my knees and kiss the ground that her teachers walk. Yes, Madison schools, at least the ones Julia goes to, are that good.

For the first time, Julia has met and exceeded every one of her IEP goals. Now, after her Kindergarten and First grade years, those goals are pretty modest, but for K, First and Second grades, she had goals carried over year to year. She still needs a lot of support and this year so much time has been devoted to dealing with her skin, but still there are gains across the board in every subject and in her social development. Next year, for the first time, there will not be behavioral plan for Julia’s bad behavior because bad behavior is something that she no long exhibits at school. There will be no behavioral goals because she doesn’t need any. Just typing this, I tear up. Four years ago, I didn’t think this time would come. I had no idea that there would be whole days, whole weeks, whole months and semesters even when no one from school would call to talk about Julia’s behavior that day. We do not have behavior charts that comes home with sad faces. We do not have behavior charts at all. And school is a wonderful reason to wake up early when the bed is warm and my girl would really like to sleep for another hour or two.

I officially asked for Julia to repeat fourth grade. I’ve mentioned it to her special ed teacher and chatted with the principal about it, but this was official. The responses were immediate and without hesitation. Her classroom teacher said that she wanted to retain Julia in her room (which is not normal procedure for kids repeating a grade but will benefit Julia incredibly!). Her special ed teacher, said with undisclosed glee, “I get to have Julia for an extra year!” The other thing that was said was that there would be disappointed fifth grade teachers next year. There can be no final decision about repeating a grade until closer to the end of the school year, but barring great changes of one sort or the other, Julia will stay at Randall School for an extra year.

Just wow! If I was one to believe in an micromanaging god, I would be more than sure that Madison had been hand picked for us, and when David got the call from the Madison Chief Justice offering him the job weeks before he got a similar call from a judge in Brooklyn, that there was divine guidance. And to be serious, I can believe that the Universe, that some divine being, just nudged our decision just a little and just to make what would be such challenging years for me, just a wee bit easier for us. And of course, it is not that I did not research Madison and schools and neighborhood, and not that I didn’t pick the particular school that she goes to, but chance, as well as divine intervention, favor the well prepared.

One of the things that has been devised for Julia this year is Julia’s Art Club. Most every week, Julia picks four kids from her class who have previously expressed interest in doing art with her, issues invitations at the beginning of the day, and during recess the five of them go to the art room and draw. They are given a set amount of time to draw and then time to show their drawings and comment about the drawings. Julia leads the discussion (with some help) and there are actually kids who like to sit next to Julia and watch her so that they can draw like she does. Julia then thanks everyone for coming and helps all the kids clean up. Again, it is with some prompting and help, but what a way to have a social group. How perfect is this for Julia who does not read at grade level yet be the leader in something that she does above grade level.

Listening to NPR as I was chopping garlic, an interview of a film maker who has made a fictional movie about the Bayaka pygmies and the ethnomusicologist who lived with them. What struck a chord with me was the that the words for singing and dancing for these people is the same word. They sing and dance a lot, close to all the time. Everyone does it and everyone makes original music and dance as well as singing the songs and dancing dances that have been passed down to them. What does it feel like to grow up in such a society? Dance and song the same word!

James Taylor singing Up On the Roof on pandora and I sing a few words and move from the inside out. The same word. The same word! What a wonder that would be.

When Cheshire went to Sycamore School, she had music every day as part of the school day. She played in a school band, carried one, sometimes two instruments every day into school to practice and perform with her friends.

She had music homework that was as important as math and history. It was, sort of, the bonus of going to a private gifted school, the fortunate circumstance of a brilliant music teacher who helped devise the original curriculum for the school, who believed that all kids could play and learn to play together. It was such a gift to Cheshire who loved music from very little on and it taught her so many things outside of playing and performing.

What music did for Cheshire, graphic art may do for Julia. How incredible that would be.

19 January 2012

In the middle of the night

Miss Clavel turned on her light

and said, "Something is not right!"

~Ludwig Bemelman, Madeline

My favorite picture from Bemelman’s classic story is of Miss Clavel rushing to the girls’ dorm room at a 45 degree angled run to take care of whatever was “not right.” My own Miss Clavel came rushing over to let me know that “something is not right!” Mary came over for tea and to post the warning that I may be leaning too far over that pit of despair.

Stepping away from the fact that it is me and I am quite miserable a lot of the time, it is quite a curious situation. I am spending my time this year, at least in part, being as reflective as I can be about my life changes. Intentionally, I am working through my great loss. I am cleaning house inside and out. I am steadfastly facing the storm with the hope that I can incorporate, process, and integrate the past and present to arrive at a . . . nor normal or not where I was before David died, but a new wholeness of spirit.

But doing this stuff makes me sad. I am utterly lonely and pretty miserable a lot of the time. Of course it does. But am I too sad? Am I tipping into depression, a physical depression that I should not try to cope with alone. How much is too much?

I argued with Mary. It was, I fear, a reluctance to consider a therapist, another doctor to explain something to. It is not a reluctance to let someone else into my world -- I write here. But it is a reluctance to need to explain my story. I have been explaining Julia’s story for a long time now and it is exhausting. I am tired of it. Every new therapist the medical practitioner needs to hear enough to help. I am burned out with explanation. The recent pediatric dermatologist visit left such a sour taste in my mouth. And when I thought, albeit briefly, about what I would say to a mental health practitioner -- dead husband, autistic child, lack of direction and vocation, and winter -- well, who wouldn’t be depressed.

But not one to look a gift horse in the mouth -- I just love that saying. Such a visual! -- and knowing and respecting Mary’s love and experience, I called my doctor’s office yesterday. The practice has at least two behavioral care providers on staff and available for appointments without referrals. I needed to start somewhere. The practice also has a few days a week when there are same day appointments which are kept open, usually for emergency and as it turned out there was one about an hour after I called. Not an emergency but no one else took that time.

So, I went.

I have had some issues with my doctor’s practice from time to time, but yesterday, I was impressed. I counselor/doc that I saw had actually read my file before I got there, so my big qualm was taken care of. I could begin in medias res. When I was able to quantify my concerns, I isolated my reasons for taking Mary seriously:

  • I feel no joy in my life. It is especially apparent when doing things that have brought be joy in the past.
  • I do not have the patience that I need when I am parenting Julia. I grow frustrated and irritable much too quickly.
  • I have a lot of interrupted sleep.

I would live with the first and third, but the second is too important to me not to do everything I can to do a better job parenting Julia.

The counselor made some suggestions -- a parenting journal, working on acceptance of my limitations as a single parent, as well as noting that I was priming the pump to raise my spirits -- exercise, meditation, writing -- and functioning pretty well. He also suggested that I may have fallen into depression and advised some medication. He offered that I should think about whether I wanted to go down that path right now, but I explained that I am not about prolonging this process any longer than necessary. If I need a medical kick in the pants, then I do. And the prescription is waiting at the pharmacy.

I will be talking to my doc in the next two weeks and may still want a referral to be able to see a counselor often. And although, I was ornery with Mary when she brought up the subject, it all seems so perfect right now. Yes, I needed some help. I have just started figuring out what that help is. And I am so very fortunate to have a friend who loves me enough to notice how far I had leaned. Thank you, Mary.

18 January 2012

Going to bed early and exhausted does not guarantee a whole night's sleep.


Frog cupcakes for class

Dinosaur birthday cake

Birthday presents

16 January 2012

Hitting the wall today. I find it very hard to even write full knowing that I’ve said the same things before. How many times? But also that the writing doesn’t really help. It is a spilling of the contents of my brain and heart but the well simply fills up again. Pain, grief, loneliness. The pit of despair.

Today is Julia’s birthday.

I did not plan well. Did not feel like planning and could not move myself to insist on planning. Is it the lack of planning that began my downward spiral or would I have been skinny dipping in despair with the most elaborate plans?

I did not plan a party for Julia. Did not do the work necessary to get a few kids together. I tried. Lamely, at best. Oh, I talked to one of my friends with kids to see if they could come over, suggesting a late breakfast, brunch kind of thing. She had her own things going on, but more importantly, I did not say, really, please, I need to have something planned for Julia and I was hoping for your help to kick my ass in gear. Had I asked for that kind of help . . .

I did not.

And I did call another friend with the suggestion that we have a “family” birthday dinner. But I called late and did not follow up with a second call. She just called back today.

And my mind goes back -- slammed back is a more accurate description -- to two years ago. David’s first hospitalization, the planned party for Julia that one of her therapists helped me with because David was in the hospital, the saving of a few last presents and some cake that we took to the hospital to open and eat with Daddy. To include him because . . . well, not because this was Julia’s last birthday with her Daddy. I was hanging on to the family life I wanted her to have. I was insisting on it.

Now, I think of it as the beginning of our staunchly brave period. We were in fight mode. We were going to beat this thing and live a wonderful life. Happily ever after.

Oh, god, I think I wrote all of this last year. I am not going to check but I know that I was in a tail spin around Julia’s birthday after have a pretty good Christmas holiday and new years.

Forgive repetition.

These are/were our private holidays. It was never sad or depressing to make a cake, have a special dinner, light candles and sing with three of us. We did it countless times for Cheshire and it is so very okay for Julia. But the two of us? It feels utterly depressing and lonely to have Julia’s birthday alone with her.

Julia has a lot of therapy today. A day off usually means getting in extra hours to make up for missed sessions on other days or to pad the hours a bit in the beginning of a month -- we need too meet our therapy hours each month. So, I brought the cake to our therapy team meeting. Julia was thrilled. We wore hate and sang to her. We ate cake. And Julia loved the carrot cake.

And now, I am home, she at therapy. I am icing 28 cupcakes for tomorrow.

Much later.

Julia and I are in bed. I’m waiting for her to fall asleep. She said she had a wonderful birthday, maybe her best one yet. I am going to take that at face value. Appreciate that she had a good day, a good weekend, and move on.

Two years ago, after David was released from the hospital, we began to have a visiting nurse come three times a week to check on the pump that delivered drugs constantly and straight into his heart. This was the procedure and the medication that kept his heart going from January until March. So, along with the therapists who were in the house for Julia every day after school, there was now a nurse coming around super time to change lines and batteries and check on the pump. The front door was unlocked and people knocked and came through. Those were days when Julia’s behavior with her therapists could be quite challenging. She could be loud, she could oppositional. Another person with another set of priorities and another set of tasks added to the chaos.

But after the therapists left and after the nurse left, the three of us would set down for dinner. I don’t remember it as straining to keep our life normal but now when I think of it I cannot see it any other way. I see it as fighting for our normal, as finding new normal, as taking it all in, in big gulps, and insisting that everything but that dinner at the end of the day would disappear in time and we would get back to our dream of a normal family life.

And now, I am so far from that dream that it seems impossible that we lived it for so long and also that we could have expected return. Again. We did not understand how changed we were. There was a cognitive dissonance, or rather I was not aware of the cognitive dissonance that was entering the carefully constructed and maintained box which was our family life.

In the Wikipedia definition of cognitive dissonance, it says “Cognitive disequilibrium is a closely related concept in the cognitive developmental theory of Jean Piaget: the inevitable conflicts a child experiences between current beliefs and new information will lead to disequilibrium, which in turn motivates the child's progress through the various stages of development.” This explains what I am perceiving about that time even better. And I am hoping that the subsequent disequilibrium that surfaces from time to time these days will motivate my progress through my own further development.

And just to note, what pulled me out of my pit, was a phone call, talking with Amy. Just letting the self-pity overflow and venting some and having a friend be there, commiserate some, share a bit of her day, and listen.

The pit is filled in for today; the boat righted. And now, on.