31 July 2009

Friday

Has it been a week? Indeed.

We have gotten home and settled again, only to begin packing for Sacramento on Sunday. It is our annual clerks' conference and we'll see a bit of the wine country and visit with David's second cousin with whom he stayed during my first semester of SLC -- a long time ago. David goes to lots of meetings and Julia and I visit museums, zoos, playgrounds and the hotel pool. After weeks of therapy, I am looking forward to the alone time with Julia. I am hoping to sneak in more attachment work than usual.

Julia.

Um, where to start . . . .

I can see a difference, a falling backwards, after 5 day away last week. Julia was more into make believe -- I did not even see this until this week. From what I see, the therapists are trying to take Julia from play that is mostly about make believe to play that is more about doing activities. They would rather she draw, play with her clay, blow bubbles, put a puzzle together, etc. Julia, of course, loves her doll house, her little pets and her animals. The therapists were making some headway before we left for Jersey, only to be brought back to days of make believe. Julia also complained and shouted at her therapists most this week than I've heard before and I attribute that to her growing comfort with them - any honeymoon is officially over. But although there was backsliding in type of play and Julia's moods, Julia's transitions were pretty good.

I am not a believer in continuity of this therapy. We will not leave again for more than 3 days after this vacation for a long time.

When we were in Jersey, Julia brought me her pile of sight words and a new book to read. So, now we are reading Follow Me, Mittens. I bought this book with the intention of using it to learn to read, so it was a very good choice on her part. Although it is billed as a learning to read book, it is not a instructive as Green Eggs and Ham -- words are used once or twice and never appear again, and there is very little in the way of patterns for Julia to hook into. Still, she is making her way through the pages, grabbing onto some of the words and catching a few more each time we go through the book. If I get time tomorrow, I will make some sight word cards to go on vacation with us. (I wondered how Julia would do with the last set of cards. Instead, of introducing the cards 3 or 4 at a time, I added 10 cards to the list, and although it took a bit longer to learn the 10 than it would have taken to learn 3 new words, the time was still pretty short. )

Last night, she wanted me to read "Hop on Pop" at bedtime. In the beginning of that book, Julia has already learned many of the words. She asked if one of the pages was from Green Eggs. She learned the words on that page while reading Green Eggs. She also recognized words from the words families that we've worked on. Even when she tells me that she doesn't want to read, or that it is too hard for her, she usually changes her mind pretty quickly.

I have been giving Julia a bottle once a day and using that to get into cuddling. Julia definitely wants to be in control -- she tries to hold the bottle, shift her head and her body. Anything to avoid laying like a baby and looking into my eyes. We struggle over control with me telling her that we need to do this to build a strong family, to make us a great mother and daughter team. Sometimes she will echo what I am saying and agrees to do what I ask. Also, the girl is getting so tall -- it is getting hard to hold her like a baby with the long legs and arms.

I have given into Julia's desire for rice three times a day. She is eating a few other things -- fruit and vegies and ocasionally some fish or meat. She is still eating eggs in the morning, and tuna or hot dogs for lunch. Some diet! As soon as we are back from vacation, I am finding a rice cooker. As long as I am making it every day, I should have the right tools. I wonder about this rice, many times with water, and whether it has the ability to comfort Julia.

Two weeks ago, I told Marilyn that if Julia needed life long help and our support, I didn't know whether I could do it. Almost immediately, I picked up Exiting Nirvana: A Daughter's Life with Autism, by Clara Claiborne Park. It tells the story of the autistic daughter in a family of scholars and ambitious people. Park does not have one drop of self-pity for herself or her daughter. Instead, she hits challenges and issues right between the eyes, and glories in each milestone that her daughter reaches whether it is at 8, 15, or 40. Park admits to the hard work, the disappointment, the repetitions that go on for years, and she admits to all of it with optimism because she loves her daughter.

How could I not be right there, in the same space?

23 July 2009

Jersey days

Is it still Thursday?

We woke up at 3 to catch the plane in Milwaukee at some ungodly hour to get to Newark by noon. The trip went very smoothly although sitting in regular economy class in a United plane has the air of steerage about it. There is now First Class which always looks great and where they still serve meals, Economy Plus in which a person over 5'6" can sit and where they still provides blankets and pillows, and Steerage Class in which the seats are still bolted to the floor -- at least for the time being.

Okay, just a bit more complaining.

We flew out of Chicago for the second leg of our trip out and walking through the terminal that United uses was all these banners advertising fully reclining seats, seats with butterfly wings, winged stewards serving delightful meal . . . . When you consider that most of us are stuffed into seats that an 8 year old can't get under because there is not enough room for her skinny body to kneel down to look for the missing white tiger, aren't those adds unfair?

Enough.

Julia was pretty good during the flights. She did not want to go to Jersey in the first place -- she did, however, really like going by plane. She asked if Babja was still dead. She told us that going to Babja's house made her sad and scared. I know that she has at least some concerns that we are going to stay a long time again and that David is not going to stay with us the entire time. I hope she is not having bad dreams that she is not telling us about -- I know what has them now and then at home. It is hard to get from her what those dreams are about. And she is very sensitive, observant. So much to wonder.

Julia is changing -- so hard to articulate in a meaningful way, but we can feel it. She curled up in her seat today with her head in my lap and took a nap. Being exhausted helped, but she usually tries to fight sleep on planes and in cars. Her vigilence is usually pretty high. She is letting down again.

A few strangers tried talking to her today - the security officer at the airpost, the waitress at the diner where we had dinner -- and Julia managed those general guestions of name, age, and grade pretty well. SHE ANSWERED THEM! Her eye contact is really not good with these types of strangers but she answered in a timely manner as well as with appropriate words.

She was also happy to see my sister and remember the names of my sister's cats.

We worked on her sight words while waiting for a plane, and last night, she read a few random pages from Green Eggs and Ham. She can do both. The first task was about generalizing in some manner -- not in our house (or with our mouse) -- and reading the words in an airport with lots of distractions. She did it with no trouble at all. The same with reading the random pages last night. I wondered if she had memorized the story in order -- I know that there are words that she really doesn't know except in their context in that story -- best example, "anywhere". But she read my ramdomly picked pages with no more missing of words than she would if we were reading it in order.

It is time for a new book!

A little about being back in Jersey and on this mission to clean and make the family house ready for sale. It is strange to see my mother's house being stripped of its furniture and decoration. This house that was kept so pristinely now has piles of wanted and unwanted, packed and waiting for plastic bags, and the remnants of drawers and closets stripped and swept clean. This is the house that my parents and family has lived in since I was 8 -- a very long time. It is a house that I have seen evolve and remember well what it looked like when it was first bought. I watched it grow a little bit when the basement was finished in those miles of 70's paneling and with the addition of the back sun room (Was that 90's paneling?). It is well kept still, and of a style. I have never liked this house, was never comfortable here (the first house I lived in, a two-family in Belleville, much funkier and much more lovable) but I am familiar with its shapes, its stuffiness in the summer, the size of its rooms, and the way that floors creek and a few stairs give. Although I do not have positive feelings for the years I spent under this roof, I do have the urge to make it ready for a new life with new people who are buying their first house. I am not doing any exorsism or blessing, but opening windows wide to allow the Chi to circulate and fill the nooks and corners. There are gleaming wood floors under the carpets, space in the once-furnitured rooms, and light and air coming into uncurtained and shadeless windows.

22 July 2009

lazy mom

I've started three entries in the last few days and got exactly two sentences into them and abandoned them. Busy, yes somewhat, but distracted mostly. And lazy. We leave for Jersey tomorrow in the predawn light and will be there through the beginning of next week. The trip was designed for David to visit every relative that will have him, and for me to do estate work -- translated that means cleaning the Bloomfield house. I also thought I had to visit my Jersey lawyer, but it seems that as of yesterday, the estate and selling the house are moving along swimmingly and I do not need to see them. Amazing what can be done with email and faxes, for which I am very grateful.

Also, it seems that the sibs cleaning out the house have taken their jobs very seriously and I will be surprised at how little is left to do. If that is true, I will join David in lots of visits and we could fit in a trip into the City. I can't wait to see Cheshire who should have Spain stories to tell us and also about her first week as an intern in an NYC adoption agency. She is testing the waters to see what the business end looks like and whether she would be interested in making adoption related social work a career. It could turn out to be another big NO, but personally, I can't think of anything better to do.

Julia is still thriving with her therapists. She is showing some temper and a bit of rudeness, and I caution each of them to deal with these attitudes immediately. Julia is very willing to apologize. I am not sure if this is another period of testing or more about how the therapists are invading her space -- both physically and mentally. Julia is also doing more whining to get what she wants but is pretty willing to stop when I call her on it.

These days she is a great companion. On our breaks, she is much more willing to follow my lead.

We do have a little food issues developing -- or developed. Julia had become a very picky eater, and asks for rice ALL of the time. We try to have cooked rice available to her most of the time and I am usually willing to alter or amend the meals I cook to accommodate what she wants to eat. Up to a few months ago, this meant, making pasta without sauce that she did not like, or having more than one vegie available for a meal, but I am finding that more and more, I am making something completely different for her for meals. I am wondering if this has something to do with all of the changes she is going through right now or whether we are growing a picky eater. It was around 8 or 9 that Cheshire became very picky as well and her diet was reduced to three options that we just lived with until she got over it. And she did. I really didn't worry about it with Cheshire and I debate with myself whether I should just let it pass with Julia.

Every few days, I get a batch of estate related mail. I put it in a pile on my desk and worry about it until I deal with it. I know I have at least 2 hours of work that I will do today. Part of me doesn't mind it at all, and then another part would like to put it in a draw and just forget about it. The process is slow, Jersey real estate law is an archaic labyrinth, and keeping every think moving is too much like herding cats. And it is bound to go on for another 8 or 9 months, that is, if everything goes smoothly.

20 July 2009

Yawns

I love that I can count Julia's yawns now. Four tonight. One before we went upstairs to read stories, one in the hallway getting to her room, another as we read our book, and one just before I turned out the light. I think this is the first time I have counted so many. Julia's process of letting down her guard, of feeling truly at home, of relaxing into our family is so very slow. Each time I see movement I wonder if we are there yet -- is the process finished. And then it happens again. She still holds part of herself to herself.

I gave Julia the choice of books -- the ones I brought home from the autism seminar -- to read tonight. She asked to read "When I am afraid" and she listened more carefully than she usually does as I read. I didn't really buy the idea that we could read a bunch of books and Julia would learn that Hands are Not for Hitting, how to Listen and Learn, or Learn to Follow Directions. However, it appears that these books make an impression and Julia enjoys them as well.

18 July 2009

SAM-I-AM

This evening Julia finished reading all of Green Eggs and Ham! She read out loud for 30 minutes and we got through the entire book. I am so proud of her! She still doesn't know all of the words so we will go over the book for the next week or so, but we can start on a new book within the week. I am amazed that we have gotten so far and it is still July.

16 July 2009

My first autism seminar

Asperger's Syndrome and High Functioning Autism, delivered by Jay Berk, Ph.D. I learned a lot but then I have a lot to learn. These kids, these kids do get under your skin. Gave me ideas for the play group, gave me idea for Julia. Bought books with social stories, including, Hands are not for hitting. Asked Berk if there was a really good books about social groups -- he said no. Came away feeling that the social group is important, and that parents should participate or need their own group.

15 July 2009

Dane County Fair

Pictures from the rides at the Dane County Fair. Julia races for Office Depot.
Julia as a truck driver.
This bee ride was a favorite from last year.
And she finally understand how to work that bar.
And then there is the capipillar roller coaster.
Ya think she liked it?
And there is always room for ice cream!

Wednesday -- for pto work, a meeting with one of the principals (we have sisters school going from K-5 -- long history of integration), for Julia's therapy, our first team meeting, and for the house, a handyman put new hinges on all our bathroom doors.

So from the bottom, the hinges look great! They are brass but silver in color and look beautiful. Living in old houses for so long, old house with painted hinges on every door, or hinges that have been carefully cleaned but that are still old, I didn't know that I really wanted new hinges on my doors. LOL! I want to do all of the hinges in the house, most of which are painted over with a multitude of layers of different colored paints. These lovely hinges are $50 a pair, so I'm going to go slow, but if we stay in this house, within the next two years, all of our hinges will be replaced.

Ah, the house. We went to a few open houses last Sunday and did not see our dream house. Sure, some had some better features than ours but most of those were way out of the price range. As I sit on this porch typing away, I find it hard to imagine that we are ever going to find a place that pleases us more than this one. I wish we did not have as much siren noise (way too close to two hospitals) but I like where we are, I like that this is not an overly pretentious neighborhood, I like the quiet but the bustle just beyond our borders. At least one day last week, I was sure that we should move, but this week, I am certain that renovation is the right course.

Team meeting -- Our therapy team -- line therapists and senior therapist -- got together today for an hour. There was scheduling and process to discuss and we got through it all. Julia was such a hostest -- picking up the big bowl of watermelon that I had cut up for everyone and offering it to each person. She was a bit put off because her "friends" who usually play with her were talking amongst themselves, but she managed the meeting and then went to play with the one friend who stayed. Our lead therapist said that she saw small changes over the week and I reported about Julia's OT from yesterday. Everyone seems to be comfortable with what they are doing and comfortable with Julia in general. I expect a bit of a kickback when Julia starts to really test them. But, for the record, it is such a short time, the line therapists managed her very well.

I am still in awe contemplating three years of this level of therapy.

Finally, PTO. I had a long talk with one of our principals finding out a little about our two school --Franklin and Randall are sister schools which together handle our neighborhood kids K-5 grade. I am not a natural, I don't always ask the right questions, or any questions for that matter. Leadership, and I realize it is just a PTO, is a challenge. I am going to have to work on this one.

14 July 2009

Tuesday

Julia is upstairs going to the bathroom and brushing her teeth by herself before we leave for her OT. I can hear each step -- this is a small house. Julia can do these things alone. She can take a long time but then that puts her even with the rest of this family.

Changes are difficult to spot in their beginnings and difficult to quantify. Today, I am noticing changes.

At OT today, Julia was more responsive, more immediate with Annie, more there. She played Zingo with Annie, and was much more attuned to the game than she was last week. Was this solely due to doing 25 hours of one on one playing with her friendly therapists?

12 July 2009

The sun is shining and there is dappled morning light over the neighborhood, the air conditioner is one and the temperature inside the house is perfect, David made pancakes with blueberries and fresh pinneapple for breakfast, and Julia got herself dressed and is playing at my feet. Does life get better?


We went to the Madison art fair yesterday after having brunch with some friends who just had a baby. Julia was very good at brunch -- not eating much but playing with her toys, the older boy of the house's toys, and investigating baby toys. She played with the baby's feet and ask if the baby would grow up. I chuckle and say yes, but I wonder if this is a real question. Did Julia know of babies who didn't grow up? Was there ever a question of whether a baby would grow up? I don't mean the I take Julia's every utterance and search for hidden meanings, but it is worth wondering about and storing away for future questions of my own. A child in Julia's circumstances in China may have seen, heard, or known of situations that we would never consider appropriate.


At the art fair, there was a booth with very large photographs of China and a really large picture of the Great Wall. Julia dragged us into the booth and announced that that was the China Wall. We then looked at the other pictures of Chinese fishing boats and old Chinese people, etc. Julia took it in, didn't immediately leave, and very quietly studied the pictures.

She claimed it all. The place that she has been saying that she hates. China.

Julia and I ended both Saturday and Sunday at the community pool. Julia met up with Althia both days and they played together both in the pool and in the sand. Julia had a very, very good time.

11 July 2009

Three Lady Bugs

Julia had been so busy playing with her new friends and swimming at the pool that there is not much time left over to draw on her white board. Her drawing preference these days is pictures from stories like Snow White with the characters drawn as dinosaurs. And I have not managed to take a useable picture of these creations before Julia applies the eraser.

This is a tiny creation from yesterday that she said was Three Lady Bugs looking at us from the side of their heads. I love the single eye on each one.

10 July 2009

Is there anything as mind numbing as talking to a lawyer about real estate contract and filling our long boring forms?


Julia is outside walking with Amanda shieking with delight, and I thought I was going to get soooo much done today. Fun stuff, like cleaning my clothes closet and digging a few weeds, but nooooooo. Instead, I have my nose to the necessary grindstone of paper work.


Whew, nothing like a good whine to clear the air.

Julia completed her first full week of intensive therapy. At present, her line therapists, and there are four of them, are at the house for blocks of 2-4 hours each. Usually two a day. One day a week, we see three. Using visual schedule squares, Julia picks two activities from a big list of things to do. It is all playing right now, and so every choice is fun. The two choice cards are put on a Now & Then schedule and Julia and the therapist start playing with the Now choice. The therapist also sets a timer. Timer goes off, Now choice is put away, and Then choice is started.

The therapists are totally engaged with Julia. They play hard with her -- matching her stories, responding to her, asking questions, putting in their own ideas. If Julia has trouble with a therapist having too many ideas and she balks or whines, the therapist will back off a little bit, not completely. Julia is slowly started to accept more and more of the therapists' ideas and the play becomes slightly more cooperative.

I see from this method that the objectives are very clear and ever present. (I can't help but reflect that we were not as clear during our playgroup and so this is great learning for me as well.) The objectives of working on choices, follow through, transitions are renewed throughout the time together.

Julia can get out of sorts at times with the amount of regiment to this plan. She will ask to play longer with some toy. She will whine a bit in the beginning of a session that she doesn't want to chose anything, she just wants to play. The therapists insist on their process -- albeit, gently but they get their way.

On every nice day we can, we are spending free time at the pool. Julia runs and splashes. She wants me to sit on the side and watch her, and she does make sure I am watching her! During shorter breaks we have meals or snacks. I've taken to giving her a cocoa bottle during shorter breaks as well. I try to spend most of her free time actively with her.

I see some bending on her part to this schedule. And this is one week. I hope that two months of this will make school easier for her and her teachers.

I have not done our homework with her this week. I feel like it would have been too much for her this week. I also cancelled a swimming lesson i had scheduled for her today. I am hoping to get back to both.

At the pool during lunch breaks or at the end of a day, Julia looks for the few kids she has connected with. When she sees them, she yells out their names and makes her way to them. Most of the time, there are brief greetings and then Julia bounces and dives under the water. These are not intense play/communication times, but I am very happy to see Julia calling out, another kid responding, and some joy at finding one another.

09 July 2009

Morning musing

Last night, I registered for my first autism seminar! I have finally put enough information into this head of mine to come to some understanding of what I want to learn, need to learn about autism, RAD, therapies, and parenting skills. A switch has been thrown inside my head and some sorting process has happened. I expect more confusion and more overwhelm to come in, but is is nice to feel this plateau of clarity for a short time.

08 July 2009

Julia did a solid day of therapy on this very rain day. She did not want to go outside although I offered that she could walk with her umbrella which she usually likes to do. She kept her therapists busy and they are getting her into a simple two picture schedule and a timer. She resisted a bit today but Julia is still getting to pick what she is doing and all her choices are her favorites.

Amanda, one of the line therapists, wrapped Julia in a blanket and rolled her around on the floor. This kind of deep pressure stimulation calms many people with autism. We did some of this when we brushed Julia. I am interested to see if this type of stimulation helps Julia regulate herself.

It is bizaar to have Julia at home but occupied all the time. I know I will grow very used to it but it is hard to imagine that we are going to do this for three years. Right now, I almost miss her as I pass through the room that she is using with a therapist as I do chores or my desk work. When Stephanie, the last therapist of the day, left after 5 today, I gathered Julia up in my arms and gave her big hugs and kisses. I do think that she felt the same because she laughed and gave me the biggest smiles.

After dinner, we were going to take a walk but the mosquittos were so intense and we didn't feel like spraying down with repellent to go around the block. There are jokes about mosquitos as Wisconsin state bird. We went back inside and I made a cocoa bottle for Julia and I to cuddle with. Julia didn't want to cuddle but the bottle convinced her. I made her calm down before I gave her the bottle. When she took it, she immediately got younger. Her face changed, the way she tried to grip the bottle was young, and Julia was vaguely waving her legs in the air like a six month old. She became very comfortable, and now I wonder whether this is what she is so afraid of. Is she afraid that she will melt into a new closeness.

Julia became calmer and between sucks and chews on the bottle told me tht she was dreaming. She told me that she missed us in China until we came to get her. She told me that she fell down on the slide and laid in the dirt and cried and then went to sleep.

Sometimes it feels just like this


Just before sun rise

I am up with the birds this morning, before David, before my little one. I love the yammer of the morning birds in the summer. They greet the light with such gusto and verve. Would I could be like them but I admit to liking it best when I hear it, smile, and turn over for another 90 minutes of sleep. Not today.


Julia has a full day of therapy scheduled. We have a one hour lunch break that I had hoped to do at the community pool but the time doesn't work out well. She may just want to be quiet, have lunch, and cuddle with me.


I have a plethora of chores -- the estate related paper work doesn't seem to stop and I hope that I am not relying on my Jersey lawyer too much. The responsibility of it is like a tickle in the back of my throat. I worry about getting the house empty before the closing but to count a blessing or two, I am very grateful that the house is sold quickly and without fuss. I am finally getting to finish my bathroom tiling and trim work although I know I have a trip to the hardware store for three more tiles. I've never done woodwork quarter round trim but David will help me get started since he did plenty in the Indy house.

So now, to it.

07 July 2009

Driving Julia's taxi

There is/was a great blog, that I can't seem to find now, written by the mom of a teen with autism. She calls it Driving Jesica's Taxi, and I chuckled whenever I read the title. Today, perhaps I understand completely.

Julia and I started the day with a visit to my foot doctor. Then, we met her new speech therapist followed by a visit to Annie, Julia's OT. We had a short lunch at a Vietnamese Noodle shop that we found when we were shopping for my camera. Lunch was great. Lots of Asian people eating at the restauran and the food was fresh and very flavorful. Julia ate her leftovers for dinner. After lunch and a stop to buy a new LPS pet, we went to our attachment therapy session and then home to 2 and a half hours of at home therapy.

By the end of this, I was wiped out! And I really didn't do all that much -- just drove the taxi and provided refreshments.

06 July 2009

Monday

Julia had a lovely time with her therapists -- why not, they let her initiate activities and then play with her. The suggest things like going for a walk to look for dead fish and playing with bubbles. If the neighborhood parents are watching they are going to want to sign their kids up for this program.


Julia ended the day exhausted and very quickly fell asleep. That happened last year when she started camp as well. Nice for her to get enough physical stimulation. Nice for her to be able to sit quietly for dinner and be ready at bedtime. But it is an awful lot of activity to make that child exhausted.


A few things from today:


Our pool has a sand pit that before last week, I thought was for kids much younger than Julia. At least, that is what it is billed as. However, last week she went with the girl that she met to the sand pit and played for a long time. There were plenty of kids her age and a bit younger there, and she was not at all out of place. Today, Julia swam for awhile and then wanted to play in the sand pit. We didn't bring any sand toys but she was able to use a bucket that was there and she was willing to share the bucket when another kid asked.


There was a little boy, 2-3, who seemed to follow Julia around from puddle to puddle. He stood right in the puddle that Julia was creating. he stamped until all the water was gone. Julia stood away from the boy and I could tell she was getting angry but she did not do anything to the boy. Later, I called her to come over to me and told her how proud of her I was. She went back and played with the little boy like a big girl playing with a younger child. It was so interesting. She told him that she was making a volcano and that lava was going to come down. She engaged him in building the volcano and talked to him. Unfortunately, the boys father looking for his daughter, scooped the boy up. I was sorry to see him go. I wonder how long she could have kept it up.

Being at the pool often is also yielding more playmates. Most of the time, Julia jumps and swims with these little girls (they all seem to be little girls. Julia doesn't care but I think that we are getting to that age of single gender play.). Sometimes for a short time, sometimes longer. One girl hoped to see her again as we left. Another left Julia when a better friend came along or maybe it was a girl who was more interested in talking than bouncing around the water. Julia continues. Her spirit is indomitable.

While Julia was in the sand pit, three boys came over and recognized her from school. None of these three were in her class but all knew the chasing Julia "game." The called her Julia dinosaur and wanted her to chase them. She looked up at them, growled at them, and then looked at me. I shook my head no, and she went back to playing in the sand. The boys ran off, making fun of her as they ran. When they gathered again, I went over to them and told them I didn't want to see them teasing Julia again. One of them immediately looked up and said he did not tease her. I said I watched him and it was mean. I didn't want it happening again. Then I told them to have fun and walked away.

When Seth, Julia's classmate, told his mother about the "game" it was clear to me that Seth was uncomfortable. I wondered about that because there were plenty of times this last year when Julia was mean to Seth -- hit him, pushed him. I wondered about his uncomfortabily. Now, I imagine that I understand. Seth and Aaron and maybe another boy or so from Julia's class played the chasing Julia game. It was not nice but probably not mean-spirited. These kids I met at the sandpit were mean. They were little thugs. I imagine that when they joined the game, Seth started feeling uncomfortable.

Maybe I am nuts.

Monday

So, we started the morning off with a punch in my ear and me getting very angry. I forcibly put Julia on the bottom stair and needed to go do a few chores before I could deal with her again. I really hate being angry with her and it was over is just a few minutes, but unfortunately I lost my cool. I am so far from perfect.

After she sat for awhile (maybe 8 minutes), Julia calmed down and started being extremely sweet. She told me how much she loved me, asked for hugs, and cuddling, and wanted to do anything to win me back to her again. (So that only made me feel worse for getting angry.) I took her in my arms and hugged and kissed her, but also told her that I saw that she was still trying to be in charge and that I was in charge. She agreed, and I kept on talking.

I wondered if Miao Miao acted more like that at the orphanage -- sweetly manipulate, instead of raging tantrums like I imagine that Julia was -- and if Julia had acted like that, like she was this morning, would she have been treated better. I don't know. I don't even know if she registered that other children acted differently, but she is so smart and she sees a lot.

Our schedule is therapy in the morning, a long break for lunch and the pool, and then more therapy.

05 July 2009

An all nighter

Ugh, just lost the beginning of a post. I hate that.

I am awake due to the steriods I am taking for my poison ivy. My body is exhausted but my mind is just whizzing along. I could watch a dozen movies right now, not exactly what I need to do since Julia is scheduled to wake up in about 2 hours. If I didn't suffer so much when I get poison ivy, this would not seem worth it, but there is no comparison between weeks as itchy agony with weeping, scabby arms and a few nights without sleep.

So, what am I thinking about with this alert mind.

We were at a lovely neighborhood picnic today. I sat among a circle of moms of chidren around Julia's age and we talked about kids, school, PTO (I learn a lot of PTO talking to parents who do not participate but listen to school yard gossip.) and the summer. Yes, I am almost a generation older than most of these women, and no, I cannot talk about Julia's achievements in school, at dance class, on the playing field, etc. If I had had this challenge when Cheshire was growing up, I would have avoided these social gatherings. I am not avoiding but there is some sting, the complicated saddness of what Julia is missing out on and what I am missing out on. The feeling that this was not what I planned for this child when she was a potential child.

I have some ability to muck through these feelings and dive into conversation. And I talk about therapies and Julia's growth and encourage questions. These are the parents of Julia's peers and although a few of them have made it clear that their kids will not bend in the least to play with Julia, I am intent on making as many as possible fall in love with her so that the parents will encourage their kids to do the same. I stretched the muscle of my advocacy today.

I have finally begun to understand and take in the intensive therapy that I have chosen for Julia, and feel like I was very lucky to choose what I now think is going to be very good for her. IDS, Integrated Development Systems, bases their work on the research done by Stanley I. Greenspan, MD. and called Floortime. As his website explains:

The DIR®/Floortime™ Model typically involves an interdisciplinary team approach with speech therapy, occupational therapy, educational programs, mental health (developmental-psychological) intervention, visual-spatial thinking programs and, where appropriate, augmentative and biomedical intervention. The DIR®/Floortime™ Model also emphasizes the critical role of parents and other family members because of the importance of their emotional relationships with the child. (See http://www.icdl.com/).

Julia's therapists started with her by following her lead, playing with her on her terms, and trying hard to engage on her level. I am excited to see what is going to happen.

I am also excited to learn more about this form of therapy for our playgroup. There is a lot of overlap and I am sure that it is going to give me ideas. One of the first things that I am reading is a long article that talks about the importance of the parent-child relationship(s). As I read, I am becoming more grounded that our playgroup needs to involve parents at all levels, especially as play guides. To learn to guide the play of your own child is important but possibly learning how to guide the play of other kids who are on the spectrum is equally important because it gives the parent a chance to compare and contrast, to development a relationship with another child who is uniquely challenged, and to learn more skills, stretch those domant play muscles, to bring back into the home. Whether I can pursuade other parents to feel this way is another story. A big part of me wants to lock myself up in an ivory tower an study for a year or two, but my Julia and her peers need this now and so I must stumble along until I become proficient.

On the house front, I have ballpark figures for my plans of renovation, and we are juggling the ideas of renovation or moving. We are looking at houses, not really to buy yet, although I don't know what I would do if we found perfection, to see if we can find everything we want, in a neighborhood we like, for a price we can afford, and that price is the cost of our house plus what we would have to spend for a big renovation. More than one bathroom and a great kitchen are deal breakers. We have not given up on our renovation and staying in our present house -- we may find out that we have perfection minus the renovation. There is no rush this time and so, we shall wait until it becomes clear.

04 July 2009

Planting the Flags

We don't do decorations of any kind too far before a holiday. Julia is still pretty short time with time. I waited until today to put our a few flag for the Fourth and asked Julia to do it. She did have to do a bit of flag waving first.

Another thing, I have never felt the need to flag wave. I have always thought it was a little like putting a bumper sticker on your car that says, I love my family. And maybe it is a second generation thing as well -- I AM an American, I don't have to be conspicuous about it like my grandparents. As if that was only for immigrants and, dare I say, conservatives. But my conservative friends (yes, that's you, Traci) may have a point in waving a few flags (Cheshire is rolling her eyes right now). And for Julia, it may have more importance to conspicuously celebrate our national heritage.

A new pondering for me.
And so, we have documented the first, annual flag dance and planting -- you know, that mere decoration does ignore the the possibility of dancing.
Flags can wave.
Flags can twirl.
Flags can be quiet . . .
Before a wild tournee to the left . . .
and a grand ending.
Now, for the more serious planting of the flag.
Mommy, Mommy, this is perfect!
Yeah Sweetie, it is.*
* And yeah, I haven't mulched yet. I am about a month late with all gardening chores but at least the weeds are not outnumbering the flowers I want in the garden.

But those fishes are hideous!

This morning I offered Julia time to cuddle and have a bottle after breakfast. She very willingly got on my lap and took her bottle of warm cocoa. I want to continue to peel a little of the layers of Julia's feelings but I know she is feeling tender about her saddnesses. Instead, I talked about how I would have treated her if we had met her as a baby. (She had looked at some new pictures that Sherri posted of Cami and Delilah, and Julia commented that her baby (Cami) was growing into a big girl.) I asked if she gave babies bottles in China and she said that she gave "her baby" bottles. This was a perfect invitation to say that there must have been someone to gave her a bottle when she was little, and someone who taught her how to peel potatoes and sort rice. I said that there must have been someone in China, maybe someone like a Bobja or grandma, who helped her grow to the strong girl that she was when we met her. Julia was quiet -- so rare for this kid. I assume that she was thinking.

Maybe this is a way of getting to her about China, a way of working out some saddnesses. Maybe it is the person or people who cared for her that she lost -- either while she was in the orphanage or when we came for her -- that she is most angry with.

I am making most of this up. No, all of it. But I don't want to wait until Julia can tell me all of this, I want to do the work now. It feels appropriate and I feel like something in Julia was touched or triggered by my mother's death.

Julia funny of the day: We were buying fish at the fish counter today and there were whole fish in the refrigerated case. First, she said: All those fish are dead! I said, yes, yes, that we only eat dead fish, so that is what the store sells. Then she said: But those fishes are hideous, Mom. (a work straight from an episode of Sagwa) Chruckes were heard all 'round.

03 July 2009

Friday

Oy! I am so tired but it is going to be good sleeping weather tonight and the sheets are clean and the bed is comfortable. Hopefully, Julia is really tired as well and she will sleep for a long time in her own bed. She was so hyper yesterday and today --

Day 2 of intensive therapy and I am settling down. Oh, I can laugh at myself. These lovely people come in and play with my daughter, and I am upset. Transitions can be so hard on us NTs. I finally cleared my desk and filed every piece of paper, made some estate calls, worked out Julia's July schedule, and wrote. Monday, when we start up with therapy again, I intend to get back to my bathroom, and when the poison ivy clears (yes, my bought for this year), I'll be out gardening.

We had a lunch break today, an hour between therapists. I made Julia rice with tofu and pickles on the side. And some watermellon and a cookie. We ate together and then I wanted to cuddle with her. She has been so resistant to cuddling and it has been hard to more through it. I didn't want her to be resistant and so, I offered her a bottle (as Marilyn suggested). Julia happily agreed and cuddled into my arms like a baby. She needs; she needs so much. For a little while, I satisfied her. Part of attachment is getting atuned to eachother. Sometimes, we are close to it and sometimes, i have no idea. She needs me to figure this out.

Julia wants to read for our home work, and so, I sigh, pretend a bit of resistance, and let her bring down Green Eggs and Ham from her bedroom. She sits beside me on the couch and I have her read pointing to each word. Initially, I did the pointing but page by page she is taking over. She has read up to page 37 -- the first 27 without any help at all. When she doesn't know a word, I ask her to pronounce the first letter. Sometimes she would rather guess the word over and over before she is willing to pronounce the first letter. When she pronounces the first letter, I give her the word. When she gets used to this, I will get her to pronounce more of the word. She is learning these words whole -- all memorizing. We are still working word families, but she is learning the words whole.

When I started Julia on Green Eggs and Ham (at Marianne's suggestion), I thought it would be the only book we would work on this summer but I bet it doesn't last to the end of July. I have to figure out her next book. What Joy!

02 July 2009

Cookies!

After so much therapy today and my sour feelings, we had to do something fun tonight. Something that we don't usually do. I decided that I want to try a gluten free diet for Julia (and for all of us) some time in August. As a first step, I am going to get rid of all of the food with gluten that we have in the house, and where better to start than the frozen cookie dough that we bought at a church fundraiser. And if we are going to bake cookies, then we should decorate. Results as follows!

punch

At attachment therapy today, Marilyn suggested to Julia to sit in my lap and cuddle. Julia got up to do it which I was pleased with, and then turned around went to claw my breasts and punched me in the nose with a closed fist. She had done this before, it started very recently, but it still surprises me. That sharp ability to turn on me, attack hard, and hold her anger. This was not the first time but it hurt more, emotionally for sure. She seemed to really want to hurt. I may be reading way to much this behavior.

We had two sessions of the new therapy at home today and it is during the second one that I have retired to my bedroom to write and rest a bit. I feel wounded and have a great need to take that girl in my arms and snuggle with her.

Later.

I have been very concerned that Julia would have a hard time with this transition to having more people in the house -- her house, her puppy house. Instead, she is delighted to have found new grownups who come to her house to play with her. I am the one feeling very invaded, like this group of people have robbed me of my child and my lovely summer days. This is gut negative reaction and I will get over it.

The initial phase of therapy is getting to know Julia. The senior therapist is taking notes like crazy and the line therapists are playing and doing a lot of following Julia's lead. Once they get into directing her activities, my perceptions will change as well.

peaceful sleep

Last summer, Julia had a hard time with blankets last summer. She wanted her down comforter with the duvet cover but it was much too hot for her to sleep. No matter how hard I tried to come up with a solution, and I was determined that the solution would be a summer blanket without the duvet, she was not happy and had a hard time sleeping with my substitutes. Our very wise OT suggested that what Julia wanted/needed was weight on her at bedtime and maybe she was comforted by the feel of the duvet material. I refused this explanation and kept trying to get Julia to use what I thought was an appropriate blanket for summer. That was until I could stand it anymore! Julia was having too much touble sleeping. I found a lighter comforter that we had and put it in the duvet cover, and Voila! Julia slept. Of course, our OT was absolutely right!

This summer, we are not even trying to more to a "summer blanket." I told Julia that I was taking the down comforter out of the duvet cover and putting in the lighter comforter. And peace reigned in her bedroom.

Now, she actually likes the change -- the light comforter doesn't make her sweat but it is still fluffy, bulky, and with a little bit of weight.

01 July 2009

Oh, I am so resistant to writing today. I started something this morning and then just stalled and stalled. Even tonight, David is putting Julia to bed and instead of getting right down to recording the day, I've answered email, chatted, looked up a few things, checked my fav blogs. You know, avoidance.

Why?

Today was great! Intense. Long morning. Energy sucking. But great.

IDS and our team of therapists plus our county social worker reported to our house this morning at nine and we met until almost noon. They asked about Julia, they told me their plans. They are open to doing some neuro-reorg work if I do the research. Their therapy is relationship based and they will work on goals in the areas of social skills, readiness for school work, and regulation. It is going to be a challenge living with therapists in the house four or five hours a day. Just the thought makes me antsy to be alone, but if it will do some good for Julia, I'd adapt.

On first meeting, I like everyone who we are working with. The psycologist knows something about attachment; one of the line therapists was adopted; they all engaged with Julia on her terms.

Afterwards, we were exhausted . . . well, I was. Our afternoon was very mellow. I sorted papers piled on my desk and made a few estate related calls. Julia water colored in a coloring book, doing a much better job than I thought she would do. She was using the paint and not just wetting the page. Then she found an old present that I was saving for a day just like today. It was a kit with a block of compressed sand in which dino bones are embedded. She very carefully did about half of the scraping to reveal the bones.

When we did homework, Julia wanted to read for the whole time. I let her do that and she read up to page 34 in Green Eggs and Ham. There are words she doesn't know but she is picking up words after seeing them just a few times, and she maintains attention while she figures out words. She does not quit when she forgets or doesn't know words. And as soon as she can read a page without many stops, she adds expression. Incredible. And she is so proud of herself.

Tonight, David was putting Julia to bed. As the settled down, I heard Julia asking David for a "sweet little kitten." The idea is from both my sister who talked to Julia about it over and over when we were in Jersey, and Traci had two kittens to play with in Ohio. I am surprised we don't have one already. We'll see what Daddy decides.