27 February 2010
If only I could get inside that head!
Still working on the life book. I am using every picture I have of her early life to put together this much simpler than I thought I would do book. I hope to answer and raise some questions that are coming up now. I find it hard to write only about her or from just her perspective -- mainly because I have so little information to use. I can write about the history of the one child policy, orphanages and abandonment, and our paper chase, but that is not relevant to her now. So it goes slower than I expected but I am pleased with the pages I have finished. The tension between word and pictures feels important. I cut and add frequently.
But I am not going to work on it for 6 months. Another week perhaps. Biggest snag right now, my computer is dying. Well, dead right now. The quick fix of two weeks ago was just that -- quick but not complete. I don't want to spend any more money on it. It may be time to give in and buy a new laptop.
I was scanning the short note that was said to have been found with Julia. I am overwhelmed by the fact that this copy of a note with 7 characters and a few numbers on it is the closest link I have to her birth family. I want to translate the entire thing. I have the rough translation that it says what day she was born on, but I want to squeeze those 7 characters to find out if there is anything else. How I would love something else about her parents. I can't expect it, but to even here that the characters are written with a fine hand, a messy hand, or someone who really couldn't write well, might be something.
Although I thought carefully when we first talked about adoption and how I did not want an open adoption of any sort, I find that I was totally wrong.
26 February 2010
Julia has been drawing for 2 hours. She is working on her 7th drawing. The first one that she made, that started with a big zero in the middle is the most interesting. She works carefully, intensely, getting excited some of the time, but so obviously enjoying every minute. She now stops at time to sharpen her pencils. We have to get her a better sharpener.
Two hours and ten minutes: Julia stopped drawing and is on to playmobil with hospital and dino scenarios. I did not give Julia her meds until 11 to see if there is any difference for her afternoon therapists. They usually get her on her way down. We made a schedule that included walking the dog, cleaning up toys, washing clothes, paiting, reading work, framing a picture, and playing with makeup.
Julia's appetite has returned. It is off from the school's schedule of and 11 am lunch. She is verily happily eating two pieces of pizze and a bottle of ensure at 1. She did lose another pound in the last three weeks but I hope that she can gain back what he has lost by the time we see the doc again -- 4 weeks away.
We are doing our reading work -- word bingo for Julia's current sight words. Amazingly, she did not reject the game out of hand like I would have expected. This is the same time we played this at home (I don't know about school) and she handled it well. We will do some reading and then some works book pages in math and reading (still in the kindergarten books). And then, I promised her a new make up game.
25 February 2010
*Saw the drug doc today. He suggested an antidepresant -- an SSRI -- to work on Julia inability to handle transition. I want to read some about them before we add a third drug to her routine. We are staying with the Aderrall 10 mg rx and adding .5 mg Guanfacine in the evening, giving her .5 mg mornings and 1 mg at night.
*Julia had a tantrum today at school. Morning transition from drawing to math. She took a shorter time to calm down but had to be taken out of the class room for her to calm down.
* Talked to Marilyn further about Julia's inability to do reciprocal interactions. Looking to see what we can do to make up for her earliest neglect -- mimicking mommy and daddy as a very young baby. I am going to try makeup this week. More on this later.
*Drawing. Just more wow! Need to take more pictures. A surfing penguin in an ocean of blue and brown -- the brown lines to show motion.
*Lots of hospital make believe.
24 February 2010
Every day in the early afternoon, it begins to snow. Light flurries mostly, and it snows though out the rest of the day until night fall but only accumulates about a half inch or so. And then the next morning the sun comes out and by noon, the sidewalks are clean because the snow has melted. At least the snow has melted on my sidewalk. Many . . . Most of my "real" Wisconsin" neighbors have shoveled the walk before they go to work or take the kid to school.
Of course, after announcing our perfect daily snows, we will probably get 5 inches tonight. Still, there is a definite push towards warmer weather, just don't forget your gloves. Not quite yet.
Julia and her whole school went to see a live stage production of Lilly's Purple Plastic Purse. It was based on the kids book by the same name written by Kevin Henkes. Julia loves that book and almost all of Henkes' books, and she LOVED the play! From what the teachers said, she was willing to wear her ear plugs and her earphones to the beginning of the play and took them off when she was comfortable. When she got back to school, she started drawing a wonderful picture of Lilly and her teacher, Mr. Slinger. When she came home, she added words to the picture and made sure they were all spelled correctly. It was great.
23 February 2010
The goal of the Wisconsin Maternal and Child Health (MCH) LEND Program is to provide interdisciplinary and disciplinary leadership training for graduate students and community professionals to improve systems of care that promote the prevention of disabilities and assure access to services for children with neurodevelopmental and related disabilities and their families. This is accomplished through interdisciplinary and disciplinary advanced clinical and leadership training of graduate students in the core disciplines, continuing education, technical assistance and consultation for community professionals. Trainees gain competencies in interdisciplinary clinical care, family needs and preferences, and the public health system.
Now to the Y and shopping for windows.
22 February 2010
Julia had a frown for math time today on her behavior chart. She did not want to do math, threw her pencil and paper, and scratched Sheila, her aide. Sheila is the model of patience -- she is an adoptive mom and has at least one kid with some severe needs. Julia also had a hard time in gym today. They are working on basket ball and Julia enjoyed that last year. Today, the noise in the gym was too much -- Julia has become more sensitive to noice and even with ear plugs, she is scared of the vibrations in the gym. She also expressed lots of fear that the balls were going to hit her. She was too afraid to do anything but sit in the corner and zone out. And she preferred to stay inside during recess today and do the math that she missed in the morning.
Julia is in a no mood today. This was her modus operandi during her first two years at home. Ask her anything and her answer is no. Booo! Boo Ya! in Chinese, and then no's as she learned English. It is not as intense right now, but it feels the same. The mood feels the same. And so, is it fear? Of what? Is it the drugs? Is the noise simply driving her nuts?
Breakfast and supper are okay. Julia is still not eating much, if at all, for lunch. We are giving her ice cream after dinner. And she is doing well on the whole milk lactose free.
As for me. I did nothing today. Malaise. Not good at all.
One of the reasons that I have not worked on a life book for Julia up to this point -- other than that she had absolutely no interest at all -- is my anger and utter saddnes about Julia's life in China. This anger and saddness is heavy on my heart tonight. And it is time to work on a lifebook for Julia that we can read together.
21 February 2010
20 February 2010
Julia made the cat without instructions and all by herelf.
Today, I am going to learn to scan photos on my new printer, take some pictures of my bathroom and the old kitchen cabinet in the basement, and make a big pot of beef stew for our church supper tomorrow evening (the recipe says that the stew benefits from standing over night and I usually don't do that. Of course, we will eat it tonight for dinner as well without standing over night).
It's snowing, slowly and lightly but snowing nonetheless. Julia is with a therapist now until noon; David is going to a blocking rehursal for his play until 2. After the therapist leaves, I am planning an at home quiet afternoon with Julia: painting, reading work, and bath will take us most of the afternoon.
Lovely, lovely day.
Oh, I miss my Cheshire. She left yesterday and I started missing her as soon as I dropped her at the airport. It was nice to get her text message later on that she was back on NYC soil and missing us. I don't know how else to say it but that Cheshire completes us. When she is home, I feel like a complete family -- not that there is not room for others, not that at all, but that we are a happy, content circle. I hope that one day she settles closer to where we live or that we move closer to where she is. I am so fortunate to have such a daughter -- I know that my mother never had this kind of a relationship. She never asked for it, but she never had it either.
Julia is bursting as usual. Yesterday morning, Julia barged into Cheshire's bedroom to say good-bye to Cheshire. Julia told Cheshire that she was going to miss her and then asked to take the pink bear (which is really Cheshire's but also used by Julia most of the time) into her bedroom. Halmark moment? Indeed. Very sweet.
Last night, I read the book, The Jolly Postman (an old favorite of Cheshire's) to Julia. It is a little book that has letters to different fairytale characters. I had not read the book before to Julia thinking that she would not understand the concept. She loved it last night and woke up this morning eager to draw/write a letter of her own. Julia's colored pencils are her best friends these days.
The last two weeks or so, Julia has been covering pages with "words", actually letters, in an attempt to write more. I think I've said that I can usually pick out Mom, Dad, and Julia amonst the letters. This morning, she is drawing little pictures on the sides of her letter like those in the book. I don't always know what will inspire Julia but when I find something she does take off.
I found some wiki sticks last weekend -- bendaroos -- and Julia has been playing with them all week. She and her therapists copies a number of the two dimentional shapes and then went on to the three dimentional animals. The set came with detailed directions which appeared pretty complicated when Julia began to use them but were well written and illustrated and taught Julia the basics of working with the bendaroos. Then two nights ago, Julia started on her own creation -- she made a wonderful cat following the general direction for making three dimentional animals. She is generalizing! Which is very important for kids with autism who seem to have touble with this concept. I have to check on ebay and other sources to see if I can find more bendaroos at a reasonable price.
I have been talking to Beth and Ginny, Julia's teachers, and to Debbie our lead therapist about drawing and regulation. All agree that drawing, clay, and now bendaroos, can be a regulator for Julia. She definitely instinctively uses drawing this way in the morning when she first come into school. But at some point, the act of creation is also super stimulating. So the engine settles into the place just right and then soars too high. Using this knowledge comes next or at least soon.
17 February 2010
I have worked out for two days! Yes, if Cheshire was not here, I probably would not have done it two days in a row but maybe we can make it 3 and then maybe next week, I can make it 3 again. Even after 2 days I feel good, sore but good.
Julia ate breakfast and a little bit of lunch.
She is still making valentines which are pieces of paper with a decorated heart in the middle and surrounded completely and filling the entire rest of the half page with letters which are supposed to be words. I can find Mom and Dad and Julia sometimes in all those letters. She is "writing." Maybe we will get to some easy spelling soon.
I work with Julia as much as I can -- that is, when there is time on the weekdays and on the weekends usually without fail. We read, play with words, do sight words, and do pages out of a kindergarten workbook. Julia sometimes resists at first but falls into the work and does it willingly. I assume that she is working slower than her age peers. I think she is. I need to go over things more often and find more than one ways to teach her anything. She move slowly forward and she doesn't forget. Once some knowledge is in her head, it is there to stay. I even see this with sight words.
And when she loves something, like those wicki sticks, she wants to play and create for all of her time. It was nice to see today that with both me and Amy, Julia was able to transition from her creations to something that the grownup picked out. Transitioning is still hard at school many times but she gets better and better with it at home.
Ginny, one of her teachers, told me today that Julia doesn't want to do her work in the sensory room. She has done most of her serious work there since the beginning of the year. For a long time, it was the only place that was quiet enough for her to concentrate and focus. Now, Julia wants to stay at her table with Peyton and Kurt and do her work. She still gets loud at times or refuses to do the work and Ginny says that she only has to remind Julia that if she disturbs the other kids, she will have to leave the room. Julia complies. This is new.
16 February 2010
Oh, the trials of being fat. Why can't I just give Julia a few of my pounds?
I wish I could get someone to perscribe Aderrall for me! I could probably lose any and all appetite pretty quickly -- at least to judge by Julia. We cannot tempt her with favorite food, enriched food, or CHOCOLATE! Getting her to finish a small bowl of ice cream is a chore. This side effect of the Aderrall has diminished once she gets use to the meds before. I hope it does the same this time and soon. I have heard that we could take Julia off the drug on the weekend and see if her appetite improved, but I don't want to play with her head so much. What does it feel like to be able to concentrate one day but not the next? I don't mean to insinuate that Julia knows the kind of effect the meds have on her, but to switch the pills out when she is not at school seems unfair to her. This is something that I know nothing about and should research.
Later: Julia had a decent food day today! She was hungry for breakfast and ate cereal with milk and a peanutbutter and jelly sandwich. She did not eat much of her lunch, but had a good dinner. We are getting some Ensure into her each day which also helps.
Julia is talking about being born in China. She says she was a baby in China and she waited there until her parents -- that's us -- came and found her. She asks me whether she was in my tummy before she was born and I can tell she knows the answer. I tell her that she was not, and she asks about Cheshire. I tell her that Cheshire was in my tummy and that another mommy in China carried her. She considers this and does not comment. Then, I tell her that I wish that I had known her when she was a baby, and how, if I had, I would have scooped her up and taken her home to hold her and feed her and keep her warm and happy. We've gone through this conversation twice now and by the end she is just listening but does not comment.
I found some Wicki sticks to buy for Julia -- they are also called bendables. They are waxed plastic sticks that are bendable and stick to each other. They come with directions to make two dimentional objects and 3 dimentional things. Julia did the two dimentional stuff yesterday with Ellen and today she and Stephanie madea whale and a mermaid, both three dimentional. Julia did a good job at working cooperatively with her therapists and she followed directions.
14 February 2010
12 February 2010
Today was the third day in a row that Julia did not touch her lunch. Really, nothing is eaten or opened. A note came home today saying that for the past three days, Julia has been very sad at lunch time. Today, she put her head in her hands and shed a few tears. When I ask her why or what she would rather have for lunch, she has not answer. She told me that she likes what we pack, but that she is not hungry. And there is no explanation for the sadness.
One of our line therapists told me tonight that she feels like Julia's personality is coming out. Ellen said that Julia is not as reactive and is showing her sense of humor. I am seeing another bump down in comfort level. A bit more of the vigilance chipped away.
11 February 2010
Julia is back at school today after a bit of a challenge this morning. Would she really want to
do our home work together so much if I kept her home to home school? But she was cute telling me that she wanted to work with me and not with her teachers. When she started telling me that she did not want to see the kids and did not want to do the teacher's work, I took her in my arms and held her. We did not go through her refusing to be held or any negative response at all. She settled right down and was ready to be calmed and give into going to school.
When I picked Julia up from school today, she told me, "I stopped screaming and I am calm now. I did not hit anybody today." This was the most comprehensive recital of her day that Julia has ever done by herself. I talked to Marilyn today about working on reciprocal conversation and how I don't really know how to get Julia to start doing it. Julia answers question or offers her own thoughts but does not ask questions of me or any person that she is with unless she has some direct need. Marilyn talked about where conversation comes from, how even very young babies engage adults in conversation with smiles and coos, and proposed that I play a mimicking game with Julia with her in my lap or arms, and trying to hold her eyes while we play at copying each other's sounds.
It pains me that Julia did not get the attention, the interaction that she needed when she was an infant, but she learns when she is taught and I hope so very much that I can teach her.
This morning I called it quits for our social skills group/play group for kids on the spectrum for this year. I could not get it going in the fall but have a small grant for this semester, but I just don't have the manpower, don't have a collaborator, and just don't have the energy.
I hated doing this -- so much -- but the plate is just too full and I am doing everything else half-assed to try to keep all the balls in the air. Frankly, I would have not taken on the PTO this year if I had known about the heart transplant, but having taken it on, I see the work I am doing as so important to our community.
On the up side, right after I wrote the email letting those who have expressed interest in our group know that I could not get the group going this sprig, I felt immediately energized to do some PTO work which needs to get done.
We are at the 3 months point for the transplant list, a point that the docs assured David he would never see. He has a great blood type and is a smaller man, so they thought he would be matched quickly -- of course, that what those who sent in their dossiers to China in April of 2006 thought as well. We are through our first period of acute stress which exhausted us both -- there must be phases of stress and we are on that part of the path.
10 February 2010
So, Julia is home for the day and after we napped or layed down quietly, and I blew snow and walked the dog, we have lunch and do reading work. Julia was patient and did as I asked. I don't know whether she so much reads or does what I ask. I don't know whether she would try to read another thing if I did not bring out the words and book and workbook. But I do and she does. I know that she likes books, she likes to be read to and she understands what she reads and hears. Her teachers, her speech therapists and I agree on this one, but -- how do you say
Then we bring out the paints. Julia has not painted much. we have paints and brushes but we don't paint. We don't draw either but I've done a fair amount of drawing for our schedule and maybe that counts, but I see that her line therapists have no luck suggesting painting. So, I clear the table after lunch and reading and I suggest nothing. I bring out the box of poster paints that we have and ask her to chose 5 objects. She picks 5 ponies (My Little . . . ) and lines them up on the table. She first puts 7 ponies in a line. I ask her to count them and she realizes that it is not 5 she put down (!), and takes three away. Then I ask her to count again and she discovers she has 4. When I ask her what she needs to make 5 ponies, she puts one down. (Does she understand or was that just lucky?) I ask her to chose 5 paints and she does -- two pinks, a citron green, a blue, and violet. We put a brush in each paint, roll up our sleeves and paint. I make crude representations of the ponies, Julia works on a picture of one pony. All in pink but with a lot of color. She captures something, quite crude, but she is really enjoying herself. After what seems like a long time -- I am more than done, she is playing with shape and color -- she announces she is done. Her hands are full of pink paint and she washes very well and then she is ready to begin again.
I leave the ponies out on a piece of green paper but put the hyacinth that we bought two days ago in the middle and ask her to draw the plant. She tells me she will put a flower in her picture but first she has to paint the table. She starts with blue and something like a table appears. Then there is some violet that looks like leaves and some yellow that might be flowers. Then she forgets about the plant on the table.
20 minutes later she is still layering paint. She does not look like a kid -- these days I am seeing Julia as about 6. Most of the time, she acts like she is in kindergarten. I felt her 4 for a very long time. I am not sure that we passed through 5 or just jumped to 6 -- but this is not a kid of 6. She sits, back ram-rod straight, holding the paint brush like a pencil but without uneasy tension. She dips the brush into the paint as if she is in full control of what she is doing, as if she understands something about the paint. What does she know, what does she feel. She is incredibly regulated. Peaceful, her shoulders are down, her non-painting hand holds the paper lightly or falls to her side. She stands as she lets go of the flower and starts applying color in ever widening circles on the page. I have seen some of these kinds of pictures come home from school art class and I wondered about them.
Now I understand.
What I see is what I saw before she began drawing. She made circles, she completely covered pages with her pencil shapes and she worked at understanding the pencil and the marks it made for months before she started drawing. I don't know if she did the same thing with clay -- shapes and then animals came and went so quickly with clay the I have no progression except that one day there were dinosaurs out of clay. Someone suggested that the circles on the page instead of any attempt at image might be a sign of autism, but it was only Julia practicing and getting to know a pencil before shapes emerged.
But now the page -- pink to begin with -- is covered with green, blue, pink, and that darker pink. She uses the violet. Is is just a huge circle, is it the sun. What will this child do with oils. We have to do a lot of painting this summer.
Julia doesn't mind me taking pictures but she doesn't look up. She doesn't mind me typing as she works. I do not have her interest and to be painting all this time is far beyond me.
08 February 2010
Julia has never been more than lean, and she has always been solid. She weighs more than you think when you look at her. And she grows. The kid is getting taller all the time. She has been eating three squares plus snacks since we met. And she eats good food. She has never been into junk food. She likes some cookies, ice cream, and cheese doodles, but she likes to drink water, doesn't eat much bread, doesn't like cheese (except on pizza), loves fruit and vegies and eats a moderate amount of meat. Rice and noodles are her mainstays.
Since the Aderrall, however, her appetite has gotten smaller and smaller, and now, I am supposed to supplement/enrich her diet so that she get more calories. And here is a task that I am completely unprepared for. I know how to eat healthy, I know how to diet and how to fast, but never have I helped someone gain weight.
It is against my ethnic heritage.
And so, I wound up in my local supermarket with no idea of what to buy to fatten up my little girl. I bought some regular cream cheese, some applesauce that was sweetened, juice that doesn't have water in it. I bought some Ensure. I had no idea what I was doing.
Luckily, we had OT today and Annie told me to add ground nuts to muffins, and protein powder to vegetables, and peanut butter to almost anything. She copied pages from a baby food book that I need to read. I don't doubt that I will figure it out but for a long time I have considered myself pretty competent in feeding those whom I feed.
There is always something new to learn.
06 February 2010
05 February 2010
Here is Emalie Squirrel, aka Julia Squirrel, Lily Squirrel, and Peyton Squirrel, with a package. She was just too darn cute to pass up a photo opportunity.
I had my trusty ear plugs in my handbag and so I offered for Julia to wear them walking into the building. At first she was not able to listen. I said it over and over, I got right in her face and told her that I was going to help her with this thing she was so afraid of. I was amazed when she listened and had me put in the ear plugs. She actually trusted me that much to listen through her fear.
With the ear plugs, Julia was able to go into the building. It was still loud but it must have been much softer than usual. She did not stop and actually managed to rush up the stairs to her classroom, something that she just doesn't do when she is afraid. She took off her outer clothing and then took out the ear plugs and was able to peaceable begin her day.
We went to our medication doc yesterday. I was armed to insist on change and a follow up appointment sooner than 2 months from yesterday. I got both, helped by a supervising doc who was overseeing my resident doc. Julia will see the doc in 3 weeks. She will be on 10mg of extended release Adderall given once a day, and .5 mg of guanfacine given twice a day.
We will do the transition this weekend to see how she does.
Julia did go to school yesterday with no medication at all because the doc wanted to see her medicated and we didn't see him until 3:30. I gave her the medication while we were at Marilyn's and really watched her come down from a pretty high state to very comfortably arranged in a chair. I have not noticed this change quite so dramatically, but I think that Julia is naturally in a more active mind mood later in the day, so the change in the morning is subtle. I had warned her teachers that she would be at school without meds, but of course, Julia had a stellar day yesterday. She has had a pretty good week with 3 great days, so she was in a good grove, but just why can she sometimes keep it together and sometimes not.
03 February 2010
In bed last night, while I was reading to Julia, she told me that she was tired. This may have been the first time she admitted to such a state.
02 February 2010
And none of this was Julia Squirrel, Julia bat, or Julia dinosaur. It was all just her as the human being that she is.
I decided that this year Julia and I were going to make our valentines. This is something I always wanted to do with Cheshire and never found the time. Tonight, I was making and Julia was writing the names of her classmates and signing, Love, Julia. If we do a few every few days, we should have enough by Valentine's Day.
01 February 2010
So, it wasn't bad!
The blood draw, that is.
I told Julia at breakfast that we were going to go to the blood doctor when I picked her up. The doc is really a gastroenterologist but blood doctor says it all. Julia gets a big blood draw when she sees this kind of doc and she needed one today. Julia protested to me before she went to school, and from what Sheila said Julia mentioned it often during school, adding what she wanted to do to the doc who did the draw -- and those things were not pretty. She did her work; however, and worked herself into a funk, not a fury, by the time I had picked her up. Sheila (her aide) said that she was just staring off after lunch which is not at all normal Julia behavior.
Julia was scared.
We talked about it in the car going to the doc. Actually, Julia did most of the talking. My motor mouth of a kiddo was scared, was brave, was going to defend herself from those nasty needle wielding docs. I kept telling her how I would protect her, how it would not hurt too much, how it would be over very soon, etc. Julia was concern that the doc would "rip her skin" and wondered how long it would take to heal, if ever! I told her about the tiny hole they would make and how quickly it would heal.
Although Julia was pretty upset and very scared, I felt for the first time in this type of situation that she was hearing me. Even when she repeated her fears, she was less sure of herself. She was trusting me and letting herself believe what I was saying. This is incredible for us!
I have to admit here and now to not being the best of mothers. Julia's blood and liver should be checked every year to make sure her Hep B infection is under control. The last time that I went through this check up was when we first moved her. It was a truly awful day. It think it took three extra people to hold Julia down while they did the blood draw and we had reactions for the next few days. So when the doc looked at my yesterday and asked why it had taken me so long to get back there, I felt guilty but I also could explain. My girl is recovering from the trauma of her first five years and I am not going to add to that huge pile of muck that we slog through. Julia has not been sick and has not shown any signs that her liver was not functioning. That being said, I do hope that the labs come back with news that she is stable.
Julia did not march into the doc's office or the lab like a stoic soldier, but she was willing to march in all the same. She clung to me when she was scared, and was very and clearly articulate about her feelings. At one point she backed into me, very deliberately, and was visible calmed by my hug.
Really, I was very proud of how far she has come.
And the rest of the day was a bit raw but pretty good. She went to OT and speech therapies and came home to play with one of her therapists. She was not as compliant as she can be but she was not aggressive. During speech, she interrupted what she was doing and turned to me to ask whether she was going to die. She asked if I was going to die and "What about Daddy?" I answered the best the I could. For all the times that Julia's gaze is all over the place when she talked to someone, she kept a steady gaze on me and I held her eyes during those answers.
It was a good day. (behavior chart was good from school too!)
Ah, and just one more thing. I've decided that we will celebrate Chinese New Year this year. I've bought two books that I am reading to Julia -- very elementary but fun. We will make some crafts -- lanterns, a lion puppet, etc. -- and hopefully I will cook. I am not sure what yet. I don't want to make a big deal of it, but Julia is interested in China -- not her China, she says. She is interested in the Great Wall of China, in the long noodles of China, and in the beautiful clothes. This is a good start and we will follow her lead!