27 February 2009

Late afternoon on the beach


Not in the airport!

We are at the pool in Fort Lauderdale. We are staying at a Marriot which is virtually in a Mall. Not that we are going shopping, but there are lots of amenities -- like restaurants -- steps away from our door. The pool and hot tup are very adequate. We go see granma and granpa for lunch and then we'll hit the beach. The spicy dragon is in her glory. Putting on shorts and flip flops was close to heaven.

26 February 2009

Julia of the morning

Now that I got all my bitchiness out of my system -- okay, not all, I have some left over for later complaints -- I did want to write a bit about Julia. When I wrote last night, I was excited, awed, and frustrated at the same time. How incredible that Julia said something about China. BUT OH, how I wish I could have figured more out! It is hard to refrain from further inferences, to fill in the details, to suggest more questions for her to answer with yeses or noes. I want it to come for her, not from my suggestions. I want to take a industrial vacuum to the cobwebs of fear and anger that are in that girl's head. I want to administer strong antibiotics to the sadness in her heart and soul. I feel like I am armed with a feather duster and a few St. Joseph's Aspirin.

Am I stretching my metaphors too far?

Last night, she also told me that she cried and cried the day that she met us. She said she was very sad. This is the second time that I've heard this. When MiaoMiao's parents were in China to get her, Julia said that MiaoMiao would be crying all that day in the car. I figured that she was really talking about her own experience. She repeated over and over that she does not belong there -- in China -- and I told her over and over that she belonged with her Mommy and Daddy.

She woke up today happy and excited about our weekend plans. She was very sweet and incredibly cooperative. She dressed herself, packed up her purple backpack, put toys away, and did a lot of little tasks that I sent her on. She is wearing a new light pink sweatshirt and a new to us jeans jacket. She loves both of them and they look so good on her. She still thanks me for clothes. She came out of the house telling me it was a beautiful day -- she has observed this before and there is something oh so old fashion about this sprite commenting on the beauty of the morning.

I have to wonder if she cleared a little something last night. If she was a bit lighter, a bit freer. I know it was only one memory and only a fragment that I understood. Maybe I am just being optimistic and wanting her so much to heal.

Do you really want to fly Air Tran?

Just imagine some juicy curse words! Instead of flying to sunny Florida right now, Julia and I are sitting in the Milwaukee airport waiting until 7 tonight to fly. Admitting my part in all of this, I did not get out of the house on time and did not get to the airport until about 45 minutes before our flight. And then we waited on line. And waited. And waited. After forever, about 10 minutes of not moving at all -- The reason for this was that all of the self-service machines were occupied with passengers who for one reason or another needed individual help and so they couldn't move and so we couldn't move. So we finally make it up to the counter and the computer says I can't check in because the plane has taken off. I then tried to get someone's attention since we still had over a half hour before the plane took off and stood for more time. Finally, one of the guys offers to help me and well, I can't check in because now it is 28 minutes before the flight and the flight is now closed. He does not even try to open the gate for us, doesn't contact this supervisor who closed it. So our only choice is to take the 7 o'clock flight tonight.

And Julia and I have a day in the airport.

Now what is really worrisome is that snow is predicted for later this afternoon, and right now, I am sitting surrounded by windows and it is really foggy. The guy at the desk assures me that we will get out but . . . . And the car and hotel pricelined in my name in Florida cannot be picked up or checked into by David who will be waiting for us at the Fort Lauderdale airport.

Lunch was good. The lady who made my tuna fish sandwish was Chinese and we had a discussion about Julia, JiangXi, Julia's English and her loss of Chinese (I didn't tell her that Julia's Chinese was never very good to begin with), and how long she had been in the US. She gave Juila some free french fries (not this mother's choice and not really to Julia's liking but it was all she had to give, and so was very sweet), and Julia who can seem at times to have an uncanny political sense said sheshe -- thank you in Chinese.

We are now sitting and waiting. Julia watching Totoro and playing with clay, me typing.

I am trying to keep my spirits up, I feel very grumpy. We have not had any luck with AirTran. The first time I flew with them, the flight I was supposed to be on was cancelled and they very quickly switched me to another flight on another airline. I was impressed with this service, however, that seems to be the exception rather than the rule. Since that time, we've travelled AirTran a few times (3-4?) and I have never gotten on the plane that I was scheduled for. The tickets for today's flight were free because of cancellations last September when we were traveling back home from Newark.

And the waiting area is flithy. There is a guy trying to give away flights for signing up for AirTran credit cards, but no one picking up the garbage that litters the carpet

In the great scheme of things, this is no way as bad as the Bolivian airline during which we lost altitude, got to put on the air masks, came down in Panama, got bussed to hotels, and arrived home a day late. But oh so frustrating anyway.

In sum, don't fly AIRTRAN!

25 February 2009

Maybe a story about China

Tonight as I was putting Julia to bed, I think that Julia told me a story about China. I mean, I think she did. It was a Julia rambling, not totally coherent, not really in narrative form, but bits and pieces of something. We had read Coffee Can Girl, a picture book about adoption. I brought the book home from the library, and tonight Julia asked to read it, and asked me to use her name instead of Annie, the name of the girl in the book. The story goes through how a baby was born in China to a mother who was too young to take care of her. And I added that Julia was born in China too and that she had a China mommy. When the story turned to the parents in the United States, I added that Daddy and I waited and waited for Julia to come home just like that mommy and daddy.

When I was finished with the story, and about to give Julia a kiss goodnight when she started to tell me how sad she was. She is saying the often but this time when I asked why, she told me that she was too young, too little, and couldn't reach. I tried to draw her out without feeding her information which is hard with Julia, but she seemed very sure about what she was talking about. Julia said that she didn't want to go down the slide or go on the swing any more. I asked why and she said that she fell down and was hurt. I asked if she was bleeding and she told me, no, not bleeding, but that her head hurt. She told me she couldn't make it back inside and that she went to sleep on the ground. I asked if there was anyone to come out and take care of her, and she told me no. Generally, when she told this story, she referred to herself in the third person, but at times she referred to BaiBai. I will ask at school next week if Julia fell off the swings or the slide recently, but I am sure they would have told me something or written something in her parents' notebook. The story doesn't sound like anything that we've experienced with her.

Julia talked a bit about being very scared and crying too much. She was not specific but let me comfort her some. She kept telling me that she was so sad that she could cry but she didn't cry.

After this part of her story, Julia told me that she didn't belong there anymore. I agreed and told her that she could visit China someday but that now she belonged here in Wisconsin with Daddy and Mommy.

Julia has a few scars on her body, including one on the back of her neck at her hairline. I have to look at it again, but it could have been from a bump with a swing or going down a slide the wrong way.

24 February 2009

two slim thoughts

Two thoughts this morning:

The social skills group could be understood as being born out of necessity but what of my affinity? I don't know if I will be good at the running of it but even now I care deeply about each child who is involved. I prepare my visual instructions wondering what will be the most useful to one specific child or another. I find myself wanting to make specific instructions based on the little I know of each one. The possibility of nudging them to improve their social skills is more exciting than I am capable of describing. In some ways I am re-inventing the wheel but I have to put in time learning as well, so some re-invention is necessary. I want to understand more than my unguided reading has taught me, but I need to wait and see how the practical challenges of running this group pan out.

Clarity this year, yes, clarity.

And in a similar vien, I am beginning very slowly to let go of the firm belief that Julia will catch up with her peers and become some version of neuro-typical. I am getting ready to understand her as having a developmental path different from other kids. Cheshire was hardly a NT either, just in another way. Again, good training for my spicy dragon. But adapting to Cheshire's "challenges" was a point of pride. Easy on the ego. And Julia needs flexible parents so much more than Cheshire, although I wonder what inflexibility would have done to Cheshire.

Not better or worse, but different. Different can be so challenging to embrace.

23 February 2009

Weekend catch up

Google ads are creepy. One that recently popped up for me promised to "make your RAD child easy to live with." Yeah, and if you buy that quick fix, I have a bridge . . . .

Julia and I have been doing trauma work this weekend. Marilyn told me to tell her abadonment stories using animals. And so, after we put some of her angries and fears into the closet with the white door and pink door knob, I told her about three little birds in a nest whose Mama leaves the nest to get worms and doesn't come back. Julia's eyes were very wide when I told her this. She suggested that the mama comes back later, but I insisted that the mama was gone. I went on to say that other mama's from other nests sometimes brought worms but that they had their own nests to keep warm and well fed. I told her that the babies were cold and hungry and very, very sad. At this point, Julia's eye were so big that I could not help but end the story with a mother bird who had lost her eggs and decided to love and be the mama to the babies in the nest. Marilyn did not tell me to find the happy ending, but I felt that it was just what Julia needed.

The same day, I was going through the mess of a desk I have and needed to look in our China File for some documents. Julia saw the pictures of her at the orphanage (we were given 5 from the time of our referral to our meeting her). We don't hide these at all but Julia has not been interested in them. She recognized herself in the pictures and told me that she "doesn't belong there." I asked her if she was happy there and she told me no. I asked if she wants to go back to visit, like we visit Babja, and she said no. I asked where she does belong and she said "at home." David came in and asked about the picture in which she was holding on to cribs. She denied sleeping there and told him she doesn't belong there. We made a big deal about her belonging with us and in our family house. She seemed satisfied.

We took Julia to the Shriner's circus on Saturday afternoon. She had a GREAT time! Amazing, that last year at this time, we went to a festival that had a short circus presentation that was really too stimulating for her to sit through. On Saturday, there was noise, crazy lights, clowns, elephants, tigers, and all the junk food smells you could imagine. She handled it all like a pro and then played circus with her animals once she got home. And she told everyone on Sunday that she loved the circus.

On Sunday, we went to an oscar party for a little while. It was all adults and Julia. She tried to be social, in her own way, with everyone. She asked names, offered part of whatever she was eating, and stood in front of the tv at times. Some of the adults didn't get her, some found her charming, some just put up with her. We use to take Cheshire everywhere we went when she was little, much littler actually. When she was 2 and 3, she was similarly too friendly. Our friends dotted on her then and she grew so much socially. I am hoping the same for Julia -- a latr learner of social graces but such an eager and willing student.

We leave for Florida on Thursday. We talked about it this morning on our way to school. Julia difinitly remember the beach and all she did there last year. Cheshire will also be joining us for the weekend as we celebrate Grandpa's 90th birthday.

20 February 2009

Friday

I read other blogs and lately I've noticed a bit more philosophy creeping into wandering minds and wiggling fingers. Ummm, can I be philosophic? I would like more eloquence and some reasons behind the behaviors I report, but then I think those things need to wait and I need to continue reporting.

There was sun today and more melting going on. We have our lawn back, most of it anyway, and there are less snow mountains for the kids to climb at recess, but the ground is still cold, small very dirty snow mounds dot the landscape, and the dog still cannot hang out in the backyard. We did not get the 3-6" of snow they promised at the beginning of the week. Did it have to do with all of Madison visualizing summer? There is more snow on the way. How long can we hold it off with sheer human will?

I went to school today for the morning. Julia had a rough morning and I marvel that her teachers are willing to look for the inner Julia hidden behind all her behavior. She started the day with a fight with Aaron, then lots of very loud noise, not listening and sitting apart during circle time, refusing to do writing workshop and throwing enough of a tantrum to be put outside the classroom on a nearby step for some outside time. She returned to the classroom and did her work, but she did not understand what they were asking her to do. Possibly if she had listened, possibly not.

There were some nice moments from this week: Julia and Lilah sat at the easel during morning meeting and drewtogether. They shared markers and speace very nicely, and Julia evenshowed Lilah how to draw a crown for the queens they were making. And Lilah said a very polite "thank you."

19 February 2009

Back from the dark place

Very quick entry to say that I am recovering from my tantrum of the other day. Whew! I am as tough as my kiddo. I am left a bit humbled and aware that I need tending and support. Thank you for the support. As for the tending, I've been encouraged to seek some and see that if I don't take care of myself, I will not be able to take care of Julia.

Just a few things:

Last night when we cuddled before I went to my meeting, Julia asked to put things into her imaginary closet. She is not always cooperative or willing to do it, but I took the opportunity last night.

Two nights ago, when we were doing home work, I dicdated sentences using lots of our sight words. I told Julia to look up at the words and copy them from the wall if she didn't know how to spell them. She did it, and I was pretty impressed. She still doesn't necessarily recognize the words in books unless I take down our card of that word. So I am doing that for awhile, and making reading a book a choice on our schedule.

The third parent meeting of our social skills group went well. Not as organized as I hoped but I think everyone learned something. People are contributing information about their kids which is very helpful. We go live on March 4. I definitely have 2 weeks of work to get ready.

17 February 2009

Renovation

Last summer, I set up the corner of our computer/toy room for Julia and I to work at learning letters. A few weeks ago, I realized that I needed to move on. Letters are learned and sounds and words are the new challenges. Julia helped me finish painting any remaining letters and picked a new color for the corner. I've been working on it slowly amidst getting geared up for our play group. Here are the results.
Her sight words are on her left and attached to the wall with Velcro strips. There is room for more words which excited Julia. She loves having the letters that we've painted or worked with all around her, and she wants to put new things on her bulletin board. This "permanent" schedule is what Julia faces when she sits down. There is another horizontal strip of Velcro near the table which has 9 choices of what to do when we sit down. I am still making all of the "cards" out of felt and sparkly fabric paint. Julia likes what they look like. She also loves the toucans which once belonged to Jon and Jim, and then lived in Cheshire's bedroom, our kitchen, and now Julia's home work corner. Those birds have a dear history.

I don't expect the magic of a newly decorated space to last forever, but right now Julia really likes working here.

16 February 2009

Warning: Heavy self-indulgence

Yesterday, we went to a Family Circle Supper -- a group of families from our church who have a meal together once a month. We met a new family with two kids from Guatemala, the mother working at a home study business as a parent resource. In all, there were 4 kids who were close enough to Julia's age for her to play with. After staying by herself with her clay creations for awhile, Julia joined the kids. We were in a conference room at the church because the hosting family lives in a small apartment. This meant the kids had the run of the hallways and did they ever use it. The ran, played tag (Julia played tag!), and exhausted themselves. It was good to see her connect with kids on this most basic level. There was lots of shouting and other parents claiming that shouting. I know Julia bossed the most compliant child a bit -- okay, a lot, but there was a stubborn boy and his very active sister who would not enslave themselves to her. And still wanted to play. That was good. It was a good way to end a rather difficult weekend, and a good break from what looks to be a tough week.

I have said to Julia's teachers and other therapists that because we are really beginning our attachment work that I expect that Julia's behavior will be more difficult. Right now, I understand why one would back far away from this work and just try to keep things peaceful. Oy! The kid is tough.

Right this second, I have no faith. I could dissolve into a puddle.

Today, I am dizzy from consideration of both autism and attachment. I don't mean that I see them as separate and divisible, but I am feeling the weight of my optimism that I will find a way to heal Julia. I am counting on attachment therapy to change Julia; I am counting on our OT, speech therapy, and social group to change Julia's autism behaviors. What if it just don't happen? What if . . . you see, she is moving forward slowly but very slowly. When we set up our IEP last year, the hope (and the whole team hoped this) was that Julia would finish kindergarten work by the end of first grade. She may be there reading-wise, but not with numbers. And behavior? Who knows.

I'll tell you what started this most recent dive into reality/supposition -- last week, at speech therapy, Julia and her therapist read/told a story. Julia answered Kimberly's questions and did some making of inferences and figuring out what came next. Julia was at her responsive best, she was attentive and engaged. I asked Kimberly about Julia's behavior and where she would put it in chronological age expectations. She hesitated and said somewhere between 3 and 4. What I was seeing as a big leap in progress was really inching along at an agonizingly slow pace. After our Waisman Center testing, Julia was judged to at an early 3 skill level in most things. So in the past year, has she only move a few months forward maturity-wise?

I want to think that she is working on many levels and that sooner or later she will thrive in an inclusive classroom. But is she losing ground? If Julia is a functional three year old, what will an inclusive second grade look like? Will she be dragged up grade by grade scaffolded up by aides and sn teachers who help her to complete parts of assignments that she doesn't understand or learn from.

Okay, a bit grim. Too grim, in fact.

I better not even get started on the attachment stuff.

I have a picture of Lisa's Sarah when she was about a year old. She is in her mother's arms but she has flung her body backwards and is laughing upside down at the camera. I have always loved that picture. To me it is Sarah being absolutely sure of her mother, Sarah fully understanding complete love before she was able to say a word. I ache inside because Julia will never have that. It is as simple as that.

Okay, so it just dawned on me. I think that I have accepted Julia's disabilities and challenges, but is this just more of the mourning process as I settle into a life with a severely disabled child?

15 February 2009

Not really knowing what I am doing

Julia and I sit on the couch. Julia on my lap and in my arms. Instead of cuddling, looking in my eyes, or talking, she starts to hit, scratch and kick. I catch her arms after a few smacks on my face and she complains that I am holding her too tight. I hold her to keep her away from harming me. She starts kicking and I wrap myself around her so she can't do it easily. She screams -- not hysterically, but methodically. She roars, she looks at me, calls me stupid, an idiot, and tells me to shut up. I try very hard to keep my calm, I am not perfect at it. I tell her that we are working on our family. I tell her that I am not leaving or moving no matter what. I tell her that I will love her forever.

This dance goes on and on and I don't really know what to do to change the dynamic. Then, almost as suddenly as it begins, Julia is willing to lay in my arms peacefully. She wants me to stop holding her wrist so that she can hug me. We kiss and then talk about China. Maybe I am crazy but I talk about how when she was in China there was no mommy and daddy to hold her and feed her. I ask her if she was scared when she first me us and she tells me yes. I ask her if she wanted to have a mommy and daddy and again, she says yes. She is paying attention. I ask her if she misses China and she says no emphatically. I ask her if she misses MiaoMiao and she tells me yes. I tell her that I miss MiaoMiao too and that I hope we can see her soon.

We sing two verses of row, row, row you boat, and then give hugs and kisses and get up.

14 February 2009

Winter Cavnival


We went to the Franklin Randall Winter Canival this afternoon. It was noisy and crowded and oh so stimulating, but Julia did great! We had lunch, watched a flamenco dancer, waited on a very long line to get into an inflated bouncy jungle, and enjoyed fresh popped corn and fresh spun blue cotton candy. Note to self: next year get my own cotton candy. The servings were very appropriate and moderate and so there was no chance that Julia was going to share.

Valentine's Day with the spicy dragon


And oh, Cheshire, I wish you were here too.

12 February 2009

baby steps

In a comment, Traci asked "Do you or David tell stories that have a beginning, middle and end without the use of a book? Do you think she's capable of making up a story with a beginning, middle and end and communicating that to you? I'll bet she does it in her play - or does she?"

To answer the last first, Julia makes up stories in her play all the time. This is one of the things that makes me think we share a gene pool -- I did this ALL the time. I am sure I spend entire years in school imagining myself the captured Russian princess having to live with commoners. (I read a kid's biography of the last Tzar and his kids very young.) This is one of the reasons to get her to tell complete stories when she is trying to talk to people. I might be projecting here but I see her getting ahead of herself -- mind is going at 100 miles an hour/mouth can only say one word at a time. We need practice but I think that she can do this and eventually be quite good at it.

It is also a good point that David and I must tell stories without books. I think that we do, but we will be more deliberate. Thank you, Traci!

We had our second training class for our social group last night. Another parent volunteered to working during group meetings and now we are set to go! It was a great training. Dana lectured about sensory diets and interventions (not the right word here) with lots of questions and comments, and we spent more than a half hour talking nitty-gritty about our kids. Strengths, weaknesses, behaviors and how to handle them. It was quietly very exciting to see the birth of community.

Yesterday around dinner time, Julia was asked to set the table and set started working. She put out one napkin because that was all that there was in the holder, and asked me for more. I took out more napkins and asked her how many she needed. She told me TWO! I was so happy. This may sound like no big deal but Julia has not dealt with numbers. We play simple number games, there are some on a favorite computer program, she does it in school, but up to this point she has not transferred any of this work to her life (and I 've begun to think that she never would). But that TWO came out as natural as if she always knew. And that it was an answer to a "how many" question was also exciting.

Baby steps.

11 February 2009

The squirrel ate the banana

The Squirrel Ate the Banana: Teaching Children on the Autism Spectrum How to Tell Stories.

My first paper? Article? Or a children's book? Okay, a kids book only if there is no colon.

Julia dropped half of her peeled banana on the way to the car the other day. I didn't want her to eat off the ground -- not that it was that dirty but we have a history of Julia grabbing all sorts of ucky stuff off floors where ever we are and putting it in her mouth. Must have worked at the orphanage, doesn't work in Madison, WI. So what falls on the ground, stays on the ground. -- so, I picked it up and put it on a snow pile. I told her that a squirrel would eat it and then we left for therapy. When we came home about two hours later, we found the banana gone and Julia decided that the squirrel -- the one that hisses at our Latkah and run around our trees which we can see from the dining room window -- took it.

The next day, Julia burst onto the playground and sort of tried to tell Amy the banana story. Of course, she started near the end and Amy had no idea what Julia was talking about. This happens often at school and at home. Julia tells someone what she considers most important -- Squirrel ate banana! -- without any background. Oh, this is so much her communication style in a nutshell.

I made her run through the whole story, which she did haltingly and with lots of prompting from me. When she got to the eating part, Amy was on the same page and understood everything. I think we are going to do more of that -- helping to put Julia's enthusiasms into context. Not formally right now, but when we talk. Dinner time seems to be a good time to practice this.

David noticed that Julia is using her hands much more to emphasize what she is saying. It is darn cute to see her shaking her finger or pointing, but it makes me realize how many of her gestures were meaningless up to this point. Yes, some autism flapping, but also lots of waving and attempting to communicate. Her gestures did more to distract a listener than to draw them in. I wonder if she is seeing something in gesture.

Yesterday, when I was talking to Dana, we touched upon what families go through mourning the loss of their hopes and dreams after an autism diagnosis, and I must acknowledge that I am still not past that. I am still, in my most irrational moments, looking for the magic wand cure, an assurance from some expert that if I only do X therapy with Julia that she well become whole and healed. I feel like I am in a better place than ever about all of this, but there is still a road ahead.

10 February 2009

When the student is ready . . .

Today is a perfectly marvelous late-March day -- 45 degrees, sunny with a clear blue sky, a fierce wind to keep me moving. Yes, I know it is not even mid-February, but I love every second of this. The dog wants to stay outside and so do I but it is all water, mud, and dirty snow. Not much for a dog or gardener to do.

Clarity is my motto this year, my mantra, my aim. I see some today, after being so glum yesterday. I get a glimpse, and maybe that is all we get. A glimpse, that diva we see out of the corner of our eye when we are not paying attention, the fairy that taps a shoulder when we are half asleep. I have to look quickly or maybe, attend quickly, because the clarity, the diva, the fairy steels back into the fog of midwinter. But today is all light and clarity. I have much rushing around to do and I do it with such joy.

I spent the morning with the autism expert for our social skills group, and boy, am I learning a lot. So many times when I have asked questions of experts, I get references to reading material which I love, but which do not address my little picky questions or answer my question 200 pages and 3 months later. As we are planning our group and building our training sessions, I have so many opportunities to ask those questions. And to hear about challenges, struggles, problems that other families face gives me so much insight.

At tomorrow's training, we are going to do an overview of strategies that work with kids with autism and/or aspergers. We are hoping that parents will be able to identify what works with their kids and what we can plan on doing. We are going to talk about the reason for a sensory diet! Something that had me very confused for months. LOL.

We are also going to try to have a frank and honest discussion about our kids' behaviors and needs. Dana told me that it might be rough or even impossible depending where parents are at accepting their kid's diagnosis, behaviors, etc. I realize how far I have come in a year, how far I have to go, and that I need to find a way to help others get to a good talking place. This group is not just about social skills for our kids but social skills among families who live with challenges. I don't know if it is even possible to do this work. We all need to come out of our enclosed safe places and share.

This is the same dilemma that I see on the adoption yahoo boards all the time. Parents (mothers) writing that their kids are doing great, adjusting and melting into their families with ease. Then finding out way later that those perfectly adjusting kids have issues with stealing or hording or never sleep.

I am wandering both on this screen and in my head. This is very exciting. It is a clear path, I have company along the path, but the way up ahead is very foggy.

09 February 2009

Tough morning

Very tough morning with Julia this morning. She got angry. That was it. There was nothing going on to really make her angry. She does say things which seem to provoke anger -- I hate school, No, I not doing that, etc. -- but this morning the anger just seemed to bloom. I tried looking in her eyes and she tried to pinch me and dig her very sharp nails into my face. (Yeah, gotta' cut those nails.) I insisted that we do our 10 count and it was the Helen Keller folding of the napkin scene (from Miracle Worker, if you needs more reference) all over again. I holding her down on the floor trying to get her to look at me; her fighting like a bobcat to get free.

In the end we did it, and got to school only a few minutes late. In the car, Julia said she was sorry, and I know that she means it. She hugged me a few times from the car to her classroom which I take to mean that these times are no easier on her than than are on me.

Gosh, I hope we work this out.

And thanks, Sharyn from your comment saying that my description of our eye to eye work reminded you are of the teaching of Thich Nhat Hanh. Of course, I don't think that my dining room this morning would have fit with the quiet of a Buddhist monastery.

So much to learn.

08 February 2009

Saturday Spring in Madison

Oy! These are not the best pictures but oh, how happy this girl was on Saturday to wear sweats and a hoodie and a cap. The sweat shirt looked ever so big on her in September and now is small! The pants are new -- her own pair because she will wear them now! -- and big, but a wash or so will shrink them a bit. And the cap? From the Indy Zoo. Ah, the old days.


Weekend update

Saturday (I started this on Saturday) and a good warm day to be outside, to walk, to shed the heavy down coats and to cavort around town in sweat shirts and caps. But a friend emailed about her health and suddenly the fragility of everything we hold dear become a bullhorn today. A Spring day in February in Madison. That is what we have today.

I have been doing the cuddling, hand holding my my terms, and a few other things that Marilyn suggested. Julia balks a little at my dictating the timing and time of our cuddling. I tell her what I am doing -- holding her to make our family stronger. I have no idea if she understands what I say on any level but she does understand my I love yous which she is saying more often as well.
Marilyn also wanted me to up the ante on the naughty chair. Instead of offering her the choice of doing what I ask or the naughty chair, I tell her that after the present time when she gets the choice, I will ask once and then send her to the naughty chair. But I must admit that she is no fool at all, and when I tell her that there will no long be a choice, she conforms and listens to my first request. On Friday, she actually volunteered to set the table.

This morning – Sunday now – Julia got a bit angry around my leaving early for church to sing. She was watching her movie and did not want to be distracted. I did not turn off the movie but grabbed her for a hug and a 10-count with our eyes. She squirmed at first but we finished 10 in sync and both said I love you.

These pretty descriptions do not tell the whole story, of course. But truthfully, at home, we have gotten pretty peaceful for the moment.

At swimming on Saturday, Julia was paired with a little boy who has Downs. He is 6.5 and short; she 8 and tall. They make a funny pair, and both challenge Linda's authority. I think they fed on each other's stubbornness yesterday, but they can learn from each other as well. I spent most of the lesson talking to his mother. I have eyed her for two weeks but did not feel comfortable just approaching her. We've now seen each other enough times and both know the other's kid has challenges. We talked of what is turning out to be the usual things with parents of kids with disabilities – school, therapy, socializing, and what the future holds. She talked about her son's problem with socializing and making friends. I told her about our new social skills group. She hoped that I could bring it district wide.

Later, before we left the Y, we ran into one of Julia's specials teachers who had heard about the social skills group at a faculty meeting and hoped the it would become a pilot program for our district. I can get thrilled with this, but need to move one day at a time to make sure I am doing all necessary work.

But the possibility of helping lots of kids with social challenges is very exciting.

Keeping me honest, Julia's behavior today at church and at the puppet show was pretty awful. I left to sing with choir at the early service; Julia and David were coming for the 11 o'clock. Julia was supposed to stay with David for the first part of the service but she wanted to come back to our classroom. She did and was fine with Erin, Kay, and I until I started to teach. Then she rushed forward and hit me. Later, while we were waiting for a puppet show to begin (yes, this was after church.) I asked Julia is she was angry because I was teaching and did she want me to teach again. She answered very clearly in the affirmative and negative. I can see lots of reasons why she might feel this way, but the fact is that I am one of the RE teachers and I will teach again. I will ask Marilyn what she thinks.

Julia got angry again at the end of the puppet show and she pinched, hit, and dug a finger nail into the back of my hand. I hurt but refused to get angry – this is still so hard for me. I made her count to 10 with me and I could see she was a bit embarrassed to do it in public – I might be seeing more in her reaction than is there. Maybe, maybe not. But if she can get angry and strike out, then we can take time to look at each other and count. When I look in her eyes and I see her calm down, I wonder if the calming will stick someday. I tell Julia that we do what we do to make our family stronger. I hope we are doing that.

I am drawn back to think about my friend and the possibility that she may be ill. I just don't want that. I write it as if I had some ability to change anything at all.

05 February 2009

Late morning after exciting night

We all woke up late this morning, meaning around 7, and did our morning readies in a completely different order than we usually do. Routine is what Julia thrives on and so she was a bit difficult to get ready. As I was trying to get her dressed, she told me that she didn't want to go to school. "I not feeling good well." "What's wrong?" I asked. "I dying," she responded as if she was saying she had a tummy ache.

Time to bite the inside of the mouth.

We did get dressed -- Julia wore her new sweat pants to school! --, ate breakfast, and got out the door. In the car, Julia told me that she "was feeling so little happy," which translates into very happy. Then, she burst out with "I love school."

Oh, I wonder what runs through that child's head.

My meeting last night went well and I was sooooo relieved. Six families came out of a possible 8 who had committed to the group. One family backed out at the last minute -- their daughter doesn't know she has any differences and they don't want to tip her off by putting her in a "special" group. I don't know this child, so I have no opinion -- not that that would make any difference. I suspect that most of the other kids either don't have a clue that they are different (this is Julia) or know something and would just like to fix it. I am assuming that this other child is more self-aware than most. Oh, these children are so very interesting.

I was grateful that our principal was at the meeting. She held the meeting together and provided a welcomed voice when parent's became uncomfortable. I was able to speak with some passion about what I hoped we could do together. I was not incredibly inspiring or accurate but people appreciated the work that went into getting us this far. Dana -- our autism expert and trainer -- did her overview and explained our schedule. I think that we worked well together and as the evening went on, we were able to compliment eachother.

Parents was generally quiet, but again, as the evening wore on, there was more participation and questions. This morning after dropping Julia off, two of the parents stopped me to ask questions and to talk.

I think that generally it was very well. Next week, getting down to the nitty-gritty of training! We start with the kids on March 4. This is so exciting.

02 February 2009

My Social Skills Group

The beginning of the social skills group for Julia and her colleagues is drawing nearer. I have taken cover with the idea that although the group was my idea and I wrote the original grant, I have teamed up with one good principal and one very good autism expert. I have been studying but I kept saying to myself that I could rely on the experts because I was just the MOM.


Well, no more. And as of right now, nothing seems to be going right. I am suffering from opening night blues big time. So this is just a weepy report. I will be all right and by tomorrow evening when we have our first parents' meeting, I'll have a smile on my face.

BUT:

1. Only 2 of the ten books I orders have arrived.
2. At least one family I need to contact has not returned my calls and their email keeps getting returned.
3. I am not doing all the reading I wanted to.
4. And I can't stay up all night to do it.
5. I don't even know if this is going to work.

Whew. It feels good to just get that all out and done with. I have today for last minute research before the meeting. Tomorrow, I will be making sample charts, schedules, take home report, etc.

Cuddling

This morning, I was dressing Julia rushed and late as usual when she wanted to be held like a baby. She has been talking about being and baby and growing up. Some of the growing up talk is about lizards who grow up to dinosaurs, and there is a lot of play around baby dinos growing up to look like their parents. Sometimes it sounds like the growing up is positive but sometimes there seems to be some nostalgia about staying a baby. Something is going on inside that kid's head!

As we were dressing, Julia threw herself into my arms and wanted to be cuddled. She initiated the eye contact and she was talked about being my baby, that this was our home, and the I and her daddy had to chase the monster away. Before this, I would have said that although the cuddling has been sweet, I didn't think we were getting anywhere. Julia doesn't like playing baby games when we cuddle. She talks. We try to spend some of the time quiet, even it is means having a bottle or watching tv together. She is liking being in my arms but I felt like she was not engaging in dipping deeper into her well. This morning (of course, while we were rushed and getting ready for school) she seemed to tell me that more was coming.

I'm waiting, baby girl.

Oh, one more thing. Two days ago, we were on the couch and I was playing with Julia's face -- who does that pretty nose belong to? When she said, Julia, I asked, What kind of nose is that? She responded, little. Then I asked about my nose and she told me, "BIG." No one has ever told me I had a big nose before. LOL

01 February 2009

Home work 1 Febuary 09

Julia had a tough time working last week. She had some hitting and yelling issues at school, and at home she did not want to do work. Yesterday, I took a step back and worked very gently. We read a few pages of Sagwa and Julia read all of the sight words that she knows. Then I drew some dinosaurs and Julia wrote their names with me sounding them out. We also wrote words and then turned them into drawings of the object. She had fun with this.

Regarding sight words: I may have written this before but I don't feel like checking back. Christy checked Julia on the sight words that I told her that Julia knew at home. Julia knew 6 of the 30 words that has no trouble names at home.

Today, after super Julia and I got to work. She did not object to doing work but I did remind her about her goal of getting 30 stickers so that she can earn the little pet shop fitness center. Doing her work tonight Julia stayed on task and was not distracted at all. She was calm. Watching her work, I could almost imagine this girl doing absolutely anything that she wanted to.

What we did:

1. Go through our sight words

2. Made a February calendar

3. Wrote a paragraph. This is the first time that Julia wrote more than one sentence about one topic. I am cleaning up the spelling. Julia wrote: "I saw a Chinese dragon. It had black eyes. Dragon danced. Now, the dragon sleep." I did encourage her to keep writing about the dragon.

4. Go through A-M for sounds. She was very serious and enthusiastic about doing this -- a few days ago, it was teeth pulling work. I pushed her further and paired a short A with all of the consonants we've reviewed so far. She could make both sounds without trouble (B-A, B-A, etc.) but I was the one who had to do the blending of the sounds. Working like this brought up an almost ancient fear. I remember very well learning to sound out words in first grade. I did very well with sight words and other memorized things, but sounding out words was way beyond my grasp. David has been known to say that this is why I am such a terrible speller, but that is another story. Anyway, I remember the moment of discovery of releasing the consonant and making the vowel sound. I remember the fear that I would never be able to do it and the elation that I did it.

Pretty spectacular.

My girl starting the year of the Ox