29 April 2009

First nap

Tonight, after Julia sat on the step for throwing a ball onto our table, I took Julia into my arms to cuddle for awhile. She fussed for awhile, then asked to let go of her arms and legs. Then, we sat quietly for awhile, and then she asked if she could sleep. I put a cover on her, she closed her eyes and snuggled down, and went to sleep.


Julia's first nap!

Since we have known her, she has fallen asleep a few times in the car. When we were in Jersey, she did nap in the car one day, which was pretty cool by itself. But she has never relaxed enough to fall asleep outside of a bed at night.

It was short nap -- 10-15 minutes -- but she woke up, really woke up, and stayed right beside me as we watched a movie. It was all very sweet. Is she learning trust?

28 April 2009


Today looks to be a great gardening day! I have no appointments or meetings, Julia is in after school until 4. I have a free day! Planning for tomorrow, catching up on house stuff.

Yesterday's meeting between the school team and Marilyn went well. I don't know if there were any incredible new insights on either side but both sides pulled me aside to comment on their approval of the other side. Mutual admiration society time. We are going to do more to help Julia transition into second grade. Christy will take her to Beth's class some time this spring to introduce her to Beth and the room and show Christy's approval of Beth -- like a good adoption hand off, I hope. Julia will also be allowed and encouraged to visit Christy next school year some time during the day. We all agree that we don't want Christy to just disappear from Julia's life. Beth's class is a 1-2 which I had not asked at our IEP meeting. This will also help Julia.

I talked to Cathy, principal, about the "game" and blocking Julia's way into school. She will deal with it. It does emphasize how important it is to separate Julia from that little guy for next year. For the last two days, we have parked in back of the school and gone into another playground entrance. Today, for the first time Julia mentioned that she was scared of Aaron and I was able to tell her that she was safe and did not have to worry that she would have anything of hers taken from her. This is as close as I can get to what she is afraid of with Aaron. The issue appears to be one of pecking order for her and I am not sure how to address that.

In the morning, I went to the budget meeting for the PTO. This is the last time that I get to just sit and add my two cents when I feel like it. A half hour into the next general meeting, I will take over. I paid attention to people more than I usually do. I have to learn to work well with every member of this group and there are some that I do not understand, but all are committed to working to make the schools the best for our kids. I can work with that.

My request for money to keep our playgroup alive was debated and questioned. I have to do something for the next meeting -- have someone else present and motion for the money. They are looking for us to get other funding -- to make our group self supporting. I don't see that as something we can do right now or even in the immediate future. Another thing to figure out.

Julia was happy yesterday and this morning. I wonder if she is feeling safe?

25 April 2009

ORL (our real life)

Last week's time had the quality of silly putty. It could be stretched, as in "Is it still Thursday?" It cracked and broke apart when pulled directly -- when trying to make our way in Jersey traffic or the supermarket check out line which in Jersey account for substantial portions of your shopping experience. Monday we landed with a bump into here and now time of ORL (our real life) and I have tripped and sputtered along since Tuesday, falling further behind, not able to focus, and on the verge of crying at the slightest hint of turmoil, change, or challenge.

Okay, should have been expected and would have understood it completely if it was another person, but of course my perception of my own abilities do not allow for recovery time. How old will I be before I realize that bodies and spirits, even mine, need recovery?

So it is Saturday. We wanted to go to the Farmers' Market -- Julia's delight mainly because she is allowed the cookie of her choice, an old bribe to get her to walk around the square, but it is thundering and raining and at 10:30 we give us the idea. In addition, Julia has a temperature, and we tarry at home wondering if we should go out at all.

Julia is rarely if ever sick. I can't remember the last time she was even warm or coughed or was punky because of a flu. She is not punky, just a bit slower and more than usually scared of the thunder. She wanted to get dressed but also cuddled in my arms for a very long time. She tells me she is scared of being sick, and my mind races off an imagines all the whys -- What happened to sick kids in the orphanage? If there was not time to tend to the well kids, what happened when their fevers spiked or a flu ran wild in the baby room? My mind goes to awful scenarios and I have no reason to either embrace or dismiss them. Julia is not talking about the why of her fear and I have to let it go for now.

I tell her over and over that she is safe, that she doesn't need to worry about being sick or to be scared of being sick, and that worrying and making her better is our job.

Our playgroup this week was a hard one to come into. We have had one defection -- whether is it the boy's behavior or the mother's lack of trust is not clear. Another family is having some family challenges and it is not clear whether the mother will be able to continue volunteering. Dana and I talked for a long time on Friday figuring out what we needed to do to keep going, what happens if we are not sufficiently manned with volunteers. By the end of the discussion, we had formulated a clear aim -- yes, it is play and interaction, but it is also appropriate behavior. We've decided to try using grad students who need to do practicums next semester, and to be rigorous about recruit NT peers. I also asked her about taking a course or training to get some background. I need to look around but she knew at least one person to ask about it. Considering that Julia will be home this summer, any course work will need to wait until the fall.

Julia had a tough time in writers' workshop this Friday -- the time that I am usually in the classroom. Christie suggested at the end of my time there that Julia's behavior might be worse when I am there. Honestly, I could have lost it right there and cried. It is not that I think I am so important to her schooling or need to be, but I like being there and I also like spending time with the kids in class. I would miss it.

Julia's temperature went down and she was not at all punky, so we went out on this rainier and rainier Saturday. We returned the phone I bought in Jersey after losing my phone on the Chicago-bound plane. The lost and found lady at American Airlines in Chicago mailed it to me, and the Sprint folks in Jersey said I had 30 days to return the phone. I explained what happened, and the nice guy at the Spring store took it back and reactivated my old phone. I am now a loyal customer!

We also bought bikes. Now we can hold our heads up high in this town. We've been looking at bike sales and used bikes but just couldn't see putting out hundreds right now especially since we needed two bikes. SOOOOO, we visited Walmart. Not at all my favorite place, but found sturdy, and heavy, bikes for $69 each. As soon as the sun comes out again, I'll put the seat/wheel extender for Julia to ride, and we will be off.

22 April 2009

Questions about summer plans and the "game"

Our summer: We had expected to send Julia (8) to Camp Shalom this summer. She had a great time there last year and it is very inclusive and caring. Her teacher, Christy, advised last year that Julia needed to continue interaction with other kids, something that I do agree with strongly. HOWEVER, as we have been working on attachment this year, I am very inclined to keep Julia home with me this summer to build our bonds and to work on school work and other things we do together -- swimming and violin. Her teacher still would like to see Julia spend time with kids for the social aspect. My question is how little time with kids is necessary. Right now, I feel like she will probably not mature socially until she is firmly attached to us. Any ideas??

The "game": There is a "game" that has been going on in the school playground for a while now among the first graders. I have seen it now and then and wondered about it. I have not seen it often and it appeared relatively benign when I did see it, but another child told his mother about the "game" and she let me know.

Her words were: "He's talked about playing the game, "oh Julia" where you call her and she runs after you. I don't know if there is anything more to it. I have asked him repeatedly if he thought it was nice to refer to a person as a thing. His response has been, "oh, I didn't think of it that way," or said that Julia doesn't seem to mind—she just laughs. I told him to watch Julia's reaction because she determines if it's a fun game."

Julia really doesn't understand that this is treating her like an object. What is nagging at me is not that the kids play chasing games -- that is wonderful because Julia can fully engage in that one -- but that there is a game of specifically getting Julia to chase kids. She doesn't get that it could evolve into a mean game, or maybe is a mean game already. For Julia, she is just excited to do anything with other kids. I don't quite know how to deal with this. I am sure there will be some action taken if I alert the PTBs. I am wondering if I should some how talk to Julia about this.

21 April 2009

IEP etc.

I was exhausted this morning when it was time to rise and shine, and Julia too took extra time to get out of bed. She had some trouble getting ready for school and mid-way through her breakfast, she got angry and needed some holding time. We cuddled and worked out some anger before we left for school. Once we finished, she was willing to brush her teeth, put on her coat, and get out the door. She offered some protest and ended with telling us she was scared of school. Once she got to her classroom, she was ready. Her behavior report showed a pretty good day for her -- she threw something at one of the boys in the lunch room, but besides that she had all smiles on the page which is pretty good for a day that started out rough.

David and I headed for Julia's IEP meeting this morning -- a meeting which lasted 3 hours. Last year, when we did this meeting, I was still reeling from Julia's diagnosis and what we could do. I had read about autism but had very little idea of how to move Julia ahead in all the areas addressed in an IEP. There was just too much information for me to digest, and I was so sad that my girl was so far behind her age peers. This year, I did feel some disappointment that she was not progressing as quickly as we would really like, that she was still far away from being a typical 8 year old, but I am learning to take Julia as she is. Our school team still impresses me with their skill and devotion. I am so thankful that we are all on the same team, all working for Julia to learn and develop.

One of our SECs told me today in the playground that this was the easiest time in the school life of a special needs kid to get what you want and need. I am storing that in my brain with the knowledge that the time to be warrior mom may come down the pike.

Julia will get a new teacher for next year but some of her support staff will be the same. Her social and behavior goals remain more or less the same, mainly because her behavior since we've started attachment therapy has regressed some. Everyone is excited to have Marilyn visit next week and talk about trauma/attachment and how to deal with it in the classroom.

Julia is on the cusp on reading -- something that I knew but it was nice to hear it said. Her math is still way off but she is more willing to sit down and do it in general and inparticular with me. And generally her willingness to do work and follow directions is improving. We will get some pull out to work on reading and math and I hope that that helps her move ahead academically. Her new teacher is very much into inclusion but is willing to try the pull out for academics with Julia.

I had to ask the question -- what could be forcast about Julia's learning. She is still doing Kindergarten work. How long will it take her to get through it and will it always take her years to get through any grade? Of course, there is no answer but Christy stressed her moving forward and I have to agree. I see Julia growing in may areas and I am happy with this growth. Right now, I feel we are moving forward in so many areas -- making up for lost time, reprogramming that little brain and heart, learning to learn and play, trusting adults and listening -- and I can be patient.

Julia's montra this morning was "Listen to my teacher. Make Christy happy." She told me she didn't like Christy's sad or mad face. I told her she could change that face by listening, and Julia really seemed to make the connection.

Yes, I can be patient.

Last night, I went to hear a lecture by Dr. Eric Carter who is a researcher at UW working on ways to maximize support for kids on the autism spectrum and with cognitive differences. He is finding tht the use of peer support -- kids supporting kids -- during the school day and for extracurricular activities is an incredible way of helping kids with school work plus social behaviors and inclusion. In addition, he is finding that the typical peers also benefit greatly from the pairings, including raising grades for peers who were working on the C/D/F plane. I was very excited by this and I have wild thoughts about what we can do with our playgroup next semester.

Now to get some funding.

20 April 2009

Airport Day

Julia and I are in Chicago waiting for our flight to Madison. We are both so happy to be going home. Julia not only really missed her Daddy, her dog, her toys, and her home but she has been talking about it for days. I don't know if she felt this way before when we travelled and she is just now able to talk about it -- all the time -- or if this is the first time that she has missed home so much. I know it has something to do with David not being with us, but it is more than daddy that she misses. Julia also grew much closer to Cheshire during this week, and by the time Cheshire left to go home to Brooklyn yesterday, Julia did not want her to go.

Yesterday, after we dropped Ches off at the train -- love that PATH -- Julia and I went up to the hospital to help my mother transfer to a short term nursing home where she will be for 10 days or so while she finishes her radiation treatment. The transfer took a long time and we did not leave the hospital until after 7, did not sit down to supper until almost 8. During that time, my mother had many needs, and Julia was about as cooperative as you could ever imagine an 8 year old to be. She did not complain or whine. She was relatively quiet -- she chattered off and on and did disturb one very ill, very old lady. I apologized to the woman, tried to explain that Julia was only 8 which she did not at all understand. Then I pleaded with Julia to be quieter and she did try. Julia watched Animal Planet, played with clay and drew, with a bit of looking -- "reading" -- at books.

I marvel at how she was able to regulate and control herself when I was unable to attend to her. If my mother had been the same way, the day may have gone easier.

It was a long one.

Today, in the morning at Newark Airport, Julia did manage a bit of a melt down. We were sitting waiting the long wait; she was playing with her toys when she noticed a little boy across from us with a game boy. Julia is very interested in computer toys and she wanted to go over and watch him play. The boy was uncomfortable with Julia and so I called her back. She was very angry! I tried calming her down but she hit me and I grabbed her into a holding position. It took her a very long time to calm down. I had her in a way that she could not hurt me, and so she was able to shout and yell, and then to spit at me. We told stories, sang, and tried breathing. I asked Julia to let go of her anger and she understood what I meant and DID NOT WANT TO DO IT. We had lots of time and so we just kept with it until Julia could tell me that she was no long angry, would not hurt me with arms, legs, words, or spitting. It was a bit hard, and in public, but I am very glad that we can stick with this. Something is changing in her.

Julia has been asked questions during this week away and she is more likely to answer them than ever before. The questions are all simple, name, home, grade, etc. And most of the time now, she tries to answer. She is not always apt to look at the asker, but she answers.

18 April 2009

24 years ago today

My darling, Cheshire, was born. And she is spending the day with us today! Could not be sweeter for me . . . and I could use some sweetness. We are also hoping for a visit from an old friend today and a new/old friend for Julia. All after a hospital visit.

Two more days and then back to the puppy house (Julia's name for our WI home). I have to keep wishing that Ches was coming back with us. Damn those wings!

Happy Birthday my dear, dear girl!

17 April 2009

In a NY state of mind

Can an 8 year old with trauma and sensory challenges thrive in NYC? I am scratching my head with how well Julia did in the city. Times Square with all of its visual, noise, human energy stimulation was greeted with an "I love this place." Yesterday's trek to the Natural History Museum where every child in Manhattan spent the day was similarly embraced. Apart from a few moment just before Julia told me she was hungry when she told me she was very angry with me, she was a well regulated and very secure child. She road the subways and the path trains and was only a bit disturbed by the noise. She answered many questions posed by other people and all in all was better than most kids her age. She did want a toy at the unlimited souvenier shops at the museum and was rather teed off that I refused. Truth be told, I would have given in but we do not have an inch in our travel bag to accommodate anything.

We are out to find a nursing home this morning and then to the hospital. I am not sure what we are doing for fun today -- lunch perhaps?

My mom will go to a nursing home for about 10 days while they finish up with radiation. No chemo is planned. Then she goes home. We are pretty far from having any sort of serious talk. My only use so far is to run errands which is fine but I am unable to be as responsible as I would wish.

15 April 2009

Just Julia

We are missing what feels like so much therapy, school, and playing. We have been cuddling/holding almost every day, but not doing much home work at all. Julia has her clay and her pencils and notebook which she has started to call her journal. I smile about that one -- me who has such a belief in journaling, who has done it for more years than I have not, who was so pleased when Cheshire found it a tool for her life.

So Julia is creating -- yesterday, a dinosaur laying on his stomach reading a book, this morning a very detailed dragon and a little man with a sword.

Julia like attention and is enjoying some of the relative attention, but she has a line that can't be crossed. Listen to her, yes, but don't ask too many questions. She told my sister, Barbara, to stop with the questions yesterday, and she didn't back down when Barbara told her that she wouldn't talk to Julia again yesterday. Julia is fine tuned in her own way -- she does not tolerate too many invasions. She would be happy to talk all day about what she was interested in. Of course, of course.

She had an outbreak of anger yesterday -- pretty good considering all the running around I have made her do. At the hospital, I limited her cookie intake. It too a few minutes but she simmered and then exploded. She hit me. I found a quiet room and held her for a little while. In controlled situations, we are working together well. She will learn to self regulate.

Today, we will try to go into NYC after visiting the hospital. We will try to see a show. Julia's first Broadway show. We think there is one she'd have no trouble sitting through. We'll see about tickets. I am so far from the theater these days, but it is still important to bring a child as soon as possible to the cathedral, to the world I first loved.

14 April 2009

Jersey Days

We crawl along. We walk through jello. Our daily round is visiting the hospital and finding activities for Julia to do in between. And food. We wait for changes, schedules, plans for treatment, and my mother's coming home. Today, I am beginning to doubt that she will come home during this week that we are here. Cheshire is with us and such a comfort. Tomorrow, we may go into the city, see Shrek the musical if there are tickets, and spend the night in Brooklyn. We need the diversion. I am writing on my laptop but no way to transfer it to the internet. Sooner or later, I'll find a wireless network.

North Jersey is such a crowded place. As kind as people can be, it is claustrophobic. I have loved the crowds of NYC and Chicago, and found peace in the open space of the Midwest. I have learned not to say never, but I don't know how to live in Jersey.

Julia is enjoying Cheshire. She is making clay figures to match her experience here. She is so very interested in Babja's IV tubes and needles and checks with the nurses when they give Babja a shot. I see her compassion growing.

07 April 2009

And so, I will go.

This is a week just full, and I am balancing life's joys and sorrows that best that I am able.

Lisa, Sarah, and Michael are visiting us for our combined spring breaks. It is just delightful having them here. Sarah and Michael are growing and are such good company. And of course, Julia just loves them. She is thrilled that Lisa and Sarah are sleeping in her room. Tomorrow, we are going to Kalahari Indoor Water Park up at the Dells. It should be fun.

Then on the other end of the emotional teeter-totter, my Mother is very ill. Quite likely a lymphoma in and around her eye. What she thought was a sinus infection has turned into a grave illness. Julia and I are going out to Jersey to help out. I was very lucky to get some affordable airline tickets and I will keep Julia out of school for an extra week after spring break. I hope I am making the right decisions.

Julia and I have not had time to do the cuddling that we really need to, nor have we been doing school work. When it was just because we are playing with Lisa and kids, I was not disturbed, but now I feel we must find some stability, some even keel to make make the next two weeks work well.

This is not easy. I hate to miss our next play group, the PTO meeting during which I will probably be elected president (unless someone else steps forward wanting the job), and the United Way luncheon for which I am nominated for a volunteer's award. Yet, as soon as I decided that I needed to be in Jersey as soon as I could, I felt a quiet peace come over me. This is the right now that I need to be present for.

And so, I will go.

05 April 2009

A week to come

It may be a challenging week. Julia is on Spring Break; it snowed last night; and we have friends coming in late tonight to experience the glories of a Madison “Spring”. I am hoping we break 40 degrees during their stay.

But it is that which circles around us that appears more ominous. My mother's recent sinus infection is not a sinus infection. Rather, it is something growing around her eye and possibly in that sinus which is very worrisome. It is growing very fast. Since my father's death, two and a half years ago, my mother has pretty much stuck to home. It has all been understandable, mourning a partner of so many years, but there really has not been any movement into a new life for her. She keeps her house clean, cleaner than mine will ever be. She goes to the Y for exercise, she occasionally visits my sister a town away and my nephews drop in to see her. She goes to lunch with a few friends and the neighbor invite her to their kids' parties.

We will get results from tests tomorrow.

Life is fragile. We should not squander a minute.

Yesterday, Julia asked David to take a walk with her. This is the first time that Julia initiated an outside activity. We have noticed, as have others, a new demeanor, something calmer, more reflective, more thinking and less reactive. This growing mood does not last for long periods of time and does not always appear when it would be most convenient. This morning Julia watched David make eggs over easy in such a serious way that I expected her to make a batch. She watched a soprano, cellist, and organist today in church play and sing. However, she also “answered” a 3 year old's big sigh in church and needed hushing. She is putting away her toys and today I realized that she did some of it without being told – putting away one set of toys before taking out another.

Julia is giving Linda a hard time at swimming lesson today. I hear her yell a loud NO but I can't tell what it is for. But Linda is patient – she changes the task and has Julia working again. Linda is trying to teach her crawl breathing. Julia has no trouble with the mechanics, she loves being underwater, but to do it over and over, to do it on demand, herein lies the challenge.

First Birthday Party

Yesterday, we joined the parade to celebrate the first birthday of a very dear little girl. After brunch, we went to our public gardens and soaked up the wonder of the conservatory. Ah the green of it all!
Then we ventured outside to find the first signs of spring. To be honest, we did see a few early narcissis and some green peaking through the dirt. But Julia found the only leaf.
Shouldn't these be on trees?

01 April 2009

Morning Encounter

This morning as we walked into the school yard -- early for once -- Aaron met Julia at the fence and told her something. I didn't hear it. Julia immediately stiffened and I could see she was in fighting mode. I put one hand on Julia's chest and told her to breath. I told her that I knew she was angry and she nodded. She did breathe and I told her that she was not going to fight. She took my hand and we headed into the school yard again. Aaron and Anna met us at the gap in the fence and they were standing like Xs barring Julia's way in. I tried to talk to them, cajole them out of what they were doing. Anna, sweet little kid that she is, immediately backed down. She was doing this for fun, not to really keep Julia out. Aaron felt differently. When I asked what I could do to get in, he told me to take Julia home. Not let her come to school. I managed to get around them with Julia in tow. It was interesting to me that while I talked to Aaron and he was saying things that could make Julia angry, she did not say anything. Nor did she make a lunch to hit Aaron. I don't recall that she even tightened her grip on my hand, a sign that she was tensing up her whole body. I might surmise that she was letting me handle it which, if so, is a great victory for our attachment. But I might be surmising too much.

Aaron tried to block us at various points but we managed to get through to the class line where Julia dropped her bag. She even ran off and ran after Aaron and Anna and she seemed to let go of Aaron's remarks.

These two kids are just made to drive each other crazy. I wonder if Julia is learning something aobut relationships apart from just reacting in order to get to the top of the pecking order.

Another small note -- The aide, who replaced Amy, Mary K, will be with the class for the rest of the year. This is great because she is loving and strict and Julia has sensed that Mary K is good for her. I was chatting with her in the playground and talking about Julia and Aaron. I said something about Julia and China, and found out that Mary K did not know that Julia was in China for 5.5 years. She is also an adoptive mom and once thought about China.