Day before Julia's birthday

Today is the day before Julia's ninth birthday -- at least the day we celebrate her growing another year. I think of her birth family as we shop for party supplies -- Julia is going to have a Tinker Bell party. The three little girls we've invited to come over are almost as excited to come as Julia is to have a party. And it will be simple -- a few games, playing with her toys which is what she is really looking forward to, and cake (although we've changed it from carrot to vanilla) and opening presents. I think that will take up the two hours.

I think of her birth family and wonder if there is a mother who thinks of her. I know that her birth date, even with the note that she was supposedly found with that gives tomorrow as the date, may or may not be real, and so maybe it is in Julia or October that her birth mother, or father, or granpa looks at the stars and wonders what happen to the little girl that they left. I wonder if there are challenges in the family, the kind that we have with Julia, or if they could possibly know how far she needs to come to heal from her years in China. I wonder if they could possibly know how much her life, her accomplishments, her growth are cherished and celebrated by the parents that raise her now.

When we first approached adoption, I thought that I could never share a child with another set of parents, but as Julia grows, I would give the world to connect with the people whose gene pool she shares. I cannot imagine my life without her and I am so sorry that they have to live without even a word about her. So I send them my love, and my thanks, and the thought that their girl, our girl is growing.

Clay dinosaurs

I really love using Julia's work to scrap with. I fully expect that one day she will ban me from doing anything at all. So, I will have fun now.

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After comments. I received one comment that I do not understand, and those kind of comments always get me wondering. When I take pictures of Julia's art and then use them on a scrapbook page, I do it for my own and Julia's fun. Julia really likes the leaves that I put in and loves to see pictures of her work. But I don' t romantisize it. I did not make up the actions of the dinosaurs or pose them or make them prettier than they are. She, in fact, told me that the mother was taking care of her eggs and the sister was singing. I don't mean to suggest that Julia does any of the scraping nor do I mean to show any disrespect to Julia's work by playing with it. And of course, I am very proud of her work. Like the mother dinosaur tht I am.

Resolution number I don't know. Oh, I didn't really number them. But I promised myself and my line therapists that I would get some crafts and projects together for them. And today is the day to start. Maybe as she makes things, I'll post pictures and links to where I found the directions.

And I just learned how to copy on my new printer.

And I called some architects and design/build teams -- have to admit that I am not comfortable with the architect I talked to. We'll see at the meetings how I feel.

And I feel like we are in a new phase of waiting for David's heart -- not quite as stressed, don't jump as high when the phone rings, don't make every appointment with a heart transplant clause.

Julia and I are going shopping for her party after therapy today, and I can take that opportunity to talk about what it is like to host a party. Fingers and toes are crossed for a good time for all.

Tonight, after we read stories and turned out the light, Julia said: "Mommy, the kids don't understand me." What kids, I asked. "The kids in school. They don't understand." I asked her what she meant and she lost her clarity, but said that, "Julia gets angry, Julia gets frustrated." She told me that she had to learn to get calm. And then she talked about Emma and Peyton, two little girls in her class.

And then, once again, she turned over and went to sleep. I feel, and I am not at all sure that this is really what is happening, that Julia is calming down, that she is mellowing out at night, calming down at the end of day, and that she finds that she had things to say to me.

During out team meeting tonight, our meeting with as many of the line therapists as can make it and our lead therapist, Julia threw her arms around me and asked me if I would be her partner. We had been talking about a game and it was very sweet.

I went to the doctor who is our autism consultant today. We talked for an entire hour. What luxury! We talked about drugs and vitamins, we talked about traditional western medicine and the vitamins, supplements, and other treatments of the DAN doctors. He believes in using what works. We talked about all of the therapy that Julia receives and he had suggestions on how to tweak her therapy. I asked him so many of my questions and he offered his advice. He suggested that I increase her Fish Oil dose and when we get her Hep B checked, to add some tests to her labs. I will see him again in March.

I said to David yesterday that I felt some sort of shift in Julia -- not that she is doing anything incredibly different and not that she is easily complying with instructions but she is a fraction more compliant, she can be pursuaded, can be talked for rocked down from the precipice of anger into a gruging copliance that sometimes results in working with another person. It is interesting to watch this from inside and out. I can almost feel at least my perception of her emotions.

I think about where we have been and I can see the very strong wall that Julia had built between herself and any person who gets close to her. And I can see that the wall is coming down, but painfully slowly, brick by brick.

An amazing thing I saw today! This morning when I took Julia to school and settled her into her work space, she started sketching. Using short lines that advanced her picture little by little, with a softer pressure on her pencil. She has been using the eraser for the last few weeks, in fact, everyone at school has noticed this because it is so different from what she has done previously.

I don't know if someone has told her about sketching, or if she has watched it. Her art teacher is pretty incredible and some of the line therapists draw as well. I don't think that she has received any direct instruction, or frankly, if she has had any instruction at all because she rarely does as instructed. But whatever, Julia is sketching!

Sunday morning

Julia worked with me for an entire hour this morning -- starting with sight words and reading a book, moving on to coloring according to directions which included counting, and then to a words game that included guessing letters. Finally, we worked with her Leapster which went beyond the hour and started with games that are hard for her and then went into play.

Julia has a day of therapy ahead, some of it making up for time we've missed this week, some just part of this semester's plan. In the summer we will go back to a five day a week therapy program so that we can have weekends as a family, but for now, . . . Sometimes I feel so constrained by therapy and now for the wait for David's heart, and then sometimes it is just a boundary, a basic rule. It is my ballet.

Little by little, the therapist -- and us of course -- are getting Julia to play games. The three letter word game sent by my friend, Robin, for Christmas is one of those that we are working on. Making 6 3-letter words is all she needs to do to qualify as playing a game. She still needs me to support her to do it, but we've gotten through it 4 times. And today, for at least one word, she was completely in charge.

Baby steps.

I am finally getting back to finishing my back hall. Painting today,maybe even tomorrow, and then I hope that I can finish the sanded floor. Starting by going through the baskets and shelves to see how we are using the new storages places. This takes time. And starting with this before noon, I don't start painting until 2. This is so much of my life, so many tasks take so very long to prepare for.

Julia on Friday

Julia is playing a new game with one of her therapists. It is called pictureka and it is basically a game of looking for small pictures on a large board of pictures. She is paying attention and doing it without any protest at all.

She also got all smiles on her behavior report today.

Sometimes, no, all the time, I feel like we are trying to give Julia back the five and a half years she lost to China. Trying to give her those and at the same time keep her growing with her peers. Something crazy about doing both at once. Should I be just letting her catch up -- make up her lost kidhood and just forget about moving her with her peers?

What happened

There are many times when I am trying to teach Julia something and I cannot explain what kind of answer I am expecting. Such are my attempts to define words like how and why and what happened. I am looking for the behaviors leading to some event, the process used to get from point A to point B, or the rationale for doing some behavior. Many times I get answers like I wet, I hurt, I sorry. Sometimes I get crazy answers like brown, and I know that Julia is trying with all her might to satisfy me.

So yesterday, I did something . . . rather odd in my book.

Julia and I were at the table after school. I was setting up some work for her and she was eating her snack -- a bowl of noodles and a cup of hot chocolate. Julia loves to drink hot chocolate with a spoon but it really does take two hands to secure the cup and quickly move the spoon from cup to mouth. She also likes to pull her shirt up to her nose and sniff. And so, she had one hand on her shirt and the other on her spoon. The inevitable happened and the milk -- a good deal of her cup -- spilled over with milk on the table, her sweater and pants, the chair and the floor. Latkah took care of the floor immediately. I saw no reason to jump up to clean up because nothing was going to be ruined by waiting. I asked her what happened and she could not tell me. She told me that the milk was on the table, on the floor, and wetting her clothes. She could tell me that she wanted to change. But she could not answer how it happened or what happened to spill the milk. I did not want her to get up until she told me and that itself kept her attention. She does not like being wet like that. We went back and forth for what seemed like a long time, when, pretty much in frustration, I picked up the cup and intentionally spilled a bit of the chocolate milk on Julia's sweater, asked myself the question of what happened, and then answered it. I did this at least three times and each time Julia was shocked that I spilled milk on her clothes, but finally she was able to tell me that the spoon knocked over the cup of hot chocolate.

I then very quickly praised her, took off her clothes -- and she was soaked to the skin, sent her upstairs to change into cozy clothes, and cleaned up the mess that Latkah couldn't reach. When Julia came downstairs, as I asked her if she now understood that "What happened" or "How did it happen" question. And she said, I don't think so.

So.

Well, it was a try.

Walking snow meditation

No, I am not that together, but as I was blowing and shoveling snow this morning -- before coffee and sustenance and so maybe I was delusional -- I thought what a nice thing it would be to snow blow the sidewalks around my whole block after a big storm. Paying backwards and forwards for a million little things my neighbors have done, a million smiles and pleasant greetings, and to make those who scowl or ignore a dog walker like me smile. Who knows it could start some sort of community trend.


Is that what I am looking for, idea wise, for the PTO?


Recently, I heard a report about inclusion and integration. What the reporter said was the the only groups of kids in high school who were fully integrated were the brainy-type nerds and the special needs kids. The conclusion was that this development was not good for integration because it made integration look like something only "outcasts" do. So, is it only when your natural peer group -- white, AA, Latino, girls, jocks, etc. -- will not accept you, then it's time to find others who have your flaws -- that is, if you consider being smart or autistic or unable to hear a flaw. This sets my mind a whirl.


Is it that only when we do not fit our natural, maybe biological is a better word, groups, do we venture to find those who are like minded? My father always boasted that when he played football in high school, he had a lot of AA friends, but when he became an adult, he did not retain those friendships. Had he outgrown -- that is, stopped playing intense football -- his need for those friends? My parents were aghast when I danced with an AA boy in a show in high school, and I was very pleased to be dancing with a great dancer. Was it just my desire to have a good partner in something that I was so interested in that led me to accept him as a partner? Was that a part of it? And it is one thing to talk about the "easy" differences -- race, religion, etc. What of the subtle difference? The very cool girl in 10th grade who was assigned to be my lab partner in bio who got to be a friend of mine -- Did we find common ground only or especially because of that frog muscle?


How is that translated to a grammar school where the four major groups of students get further and further apart as they go up in grades?


I care. I care so much.

Snow, snow, snow. The last week has been very cold, very blue skies, and no snow. A feeling grows day by day, that waiting for the other shoe to drop, for the sky to fall, for something -- well, just waiting for snow, more snow. And today that fresh blanket fell.

When I asked Julia about today at school, she told me that she didn't hit anyone, she didn't throw snow or ice, she only pulled Sheila's hair. Sheila is one of the aide's who work with her and she was trying to get Julia to do math.

The person who was supervising the playground yesterday when Julia threw the ice at her classmate (cutting his eye), said that he thought that Julia meant to hit the boy, but Sheila said that this boy was one of the kids that teased and bothered Julia last year in the playground, and that maybe now, he will not bother her.

Oh, oh, my. Sometimes I don't even know how to form an opinion.

The snow was too much for me to drive in -- no, I am not a real native yet -- and I cancelled attachment therapy today and Julia and I came home after school. We had about an hour before a therapist came and so we worked on her sight word review and then I tried playing some with words.

I print four or five words on a line and put small squares and taller rectangles around the letters. Then I do another line of the squares and rectangles in the shape of those words and she has to fill in the shapes with the words. Finally, I make another set of shapes into words and Julia guesses letters to make a new word or phrase. Julia still needs help with all parts of this, especially the guessing of the letters. Guessing is something that is beyond her ability. Like playing games although little by little, and it will still be a long time, she is learning games.

I so hope that one day some of this is fun, just as it is supposed to be.

Today, I am doing a lot of PTO desk work -- emails mostly and some phone calling. The goals I set for myself, most of which were much to lofty to do much about, are like deflated balloons littering my mental landscape. But then, if Barack is not moaning and groaning over his first year, there is no reason for me to. Maybe I'll get to change our little world but it will take a bit longer than I planned.

I am learning patience.

Julia came home today in another good mood; however, she had thrown a chunk of ice at a boy in his class, hitting him in the face and resulting in a cut under his eye. Even as her teacher was telling me about this, Julia was hugging me and asking to be forgiven. As I understand it, Julia threw the ice, which she called a snow ball and I am sure she doesn't really understand the difference, in response to an adult telling her to put the ice down. Oh, that is my Julia! Oy! How do I teach her about this??

I put her into my arms when we got home and I tried to explain how much that ice must have hurt. She told me over and over that she would never do that again, something that I am sure they rehearsed with her at school, and in truth, I am not worried that she will do it again. There have been times since she started school that she has pushed, hit, punched someone and after being told not to do it, she has stopped but what about all the other things that no one has told her about yet??

Of course, when her teacher told me about what happened, I could not help the rush of images of Julia being kicked out of school. I know, a bit rash to make such a leap, but . . . .

Julia tells me now that she is scared of me, and she is worried about what I think when she does something wrong. I see her looking over at me when we are home and she is doing something wrong. She checks to see if I am watching. I think and oh so hope that this is the beginning of some kind of knowing the difference between right and wrong. Whether she learns the real meaning of right and wrong or can be instilled with a really strong mother voice inside her head, she needs to know . . . Argh!!

Okay, I know that lots of kids are physically aggressive with their peers. I just hope we survive childhood.

Julia had a better day at school today than she did yesterday. And she was in an incredibly good mood when she came home, worked with a therapist, ate dinner, read with me, watched tv, and went upstairs to bed with her dad. She is still talking very fast at night but her activity level has gone down. She is happier than she has been for awhile.

After supper we worked on reading. We have finished The Princess and the Frog book that we were working on, and so, we started reviewing all of our sight words and will be reading the books that we've worked on. I have been using this process for a long time now, but didn't really think that I had a process until very recently. It is a Suzuki-like procedure -- learning new pieces -- words and books in the case -- while keeping the old pieces active. Reading "More Speghetti, I Say" tonight, Julia enjoyed reading. It was not as hard for her to read as the new books we work on. She enjoyed the familiarity.

Cheshire suggested that we do more than just reading and include playing with words. I've felt at a loss for what to do that would interest Julia, but yesterday, I just plunged in with a new game the Robin sent (Thank you for that wonderful box of stuff, Robin. I am saving the dinos for Julia's birthday in two weeks!) and playing with words shapes So far I have no inspired interest, but I've only just begun. If I can teach Julia to enjoy a guessing game, I should be crowned queen!

The house is quiet for the first time in two weeks. Ah. How nice. It is taking me all morning to pick up the house. Even though I got the tree out of the house yesterday, there is a lot out of place and messy. Good cleanings are needed all round, but that needs to be put off for today.

Julia woke up when I turned on the light in our room this morning -- and she said she wanted to go back to sleep. The kid's clock is beginning to set to a later time which is great. Is this another bump down in vigilance? She was grumpy and did not want to go to school but it was not too hard to cajole her into dressing and getting ready. By the time she went downstairs, she was into breakfast and school.

I did the research on fish oil and stimulant and it seems that withdrawing the fish oil was a totally wrong call. I am going to double her dose which was the recommendation from two docs and hopefully it will not take too much time to get her back where she was. I do believe that it was mildly controlling her hyperactivity and impulsivety. Never enough to make fish oil the only thing she took for those behaviors, but now I wonder if some of what we think is the removal of the guanfacine, really the due to the removal of fish oil.

Thank goodness there are no blood tests for Julia's conditions, and double thank goodness that I do not have the ability and means to do them. I'd be testing her all the time!

Julia went into school without any trouble at all. She greeted everyone she met as she was going in and did what she needed to get ready for her day. Then she sat down and started working on her journal. Coming into the room before the rest of the class is very good for her.

Many faces

Oh, I love taking pictures of Julia and I still have not learned to use the camera that I bought last summer. I use it as a point and shoot even though it is capable of so much more. Ditto with photo shop which I can fiddle with but don't know many of the features. And so here is another resolution -- to learn to use my toys this year.

I put away Christmas today. It was a sigh of a task. Julia protested but only for a very short moment. I protest too, but only for a moment. I love the way the house looks after the holiday season. Clean, clear, almost sleek in the house after the crowd of the tree and decorations. Time to clean and clear everything and then start again working on my bliss.

Ginny, Julia's teacher, called tonight to find out how our vacation was. It was great to be able to talk to her. I caught her up on Julia's reactions to the Adderall. Ginny told me that she was raising the bar for Julia with her writing. Julia usually writes one long sentence in her journal each morning. Ginny will now be asking her to write two sentences to begin her day. Ginny also told me that she was tested Julia on the 100 most common words and was very pleased with the result. She also said the Julia was pushing ahead in her reading.

We stopped giving Julia fish oil when we started the adderall. David was concerned that the fish oil might stop the med from being absorbed completely or would interact with the stimulant. I went along with this but I am now wondering if the fish oil helps Julia with concentration and attention. So, I will add fish oil and Julia's multi-vitamin back tomorrow.

The beach

For so many years now, after the new year begins, we begin our plans to go to Florida to visit David's father and his wife. We have most of our meals with the grandparents and take some walks with them, and then have as much time as we can manage on the beach. I love the ocean; I love the beach, and I am so happy that Julia loves it as well.

This year, no beach, at least not until David gets his new heart and heals.

But I am promising us a beach vacation.

Be the change . . .

The new year is in, and as arbitrary as our time keeping in, I am ready for the change. Each year I adopt a motto to use as my inspiration for the year. Sometimes I don't change the motto until March or July because I have not found a new one or because I just have more business with the old one. This morning a motto jumped out at me, from a post by a friend. It is almost or surely a cliche by now, and at the same time, it is humbling to take on a motto uttered by someone who lived what he talked about, but still it will be mine with all of its baggage for this year:

Be the change you want to see in the world.

-- Mahatma Gandhi

This is a great time for resolutions and maybe I will add them later. Right now, I set at my desk looking at a gray sky and a bright winter sun. It has not snowed in the last 24 hours and so I don't have to clean it up today -- snow at this time of year is worse than weeds in June! the bare trees and telephone wires slice and partition the sky into smaller irregular patches. No one is driving although it is past noon and the houses that I can see are dark and quiet.

Julia is playing with her leapster; David is napping. I put a host of dirty dishes in to the dishwasher . I have morning chores and a shower and then we are off to an open house hosted by David's theatre friends.

Now, there is a resolution -- to get involved with Madison theater to see if it still interests me.