31 July 2008
It all worked and we enjoyed Chinese noodles with nu-nu (beef lo mein to the uninitiated) on a blanket with 250 other families and a million mosquitos. Ah, the joys of summer. After eating the kids are called up to perform with the counselors. It is a very low stress performance but Julia had no interest at all standing up and singing with the kids. So we watched for a little while and then she wanted to go home. Unfortunately, we missed some of the best performances including a rendition of "These boots are made for walking" choreographed by one of Julia's counselors. We heard all about it waiting for the bus this morning.
My most important task today is to put together a way for Julia to do her listening therapy during our vacation. My begging -- no, I really didn't because Annie is too nice to make her feel badly because we cannot continue using the official headphones -- was to no avail. We will try to use our good headphones for vacation. They might not provide optimal sound, but heck, Julia is improving visible day-by-day, I don't want to stop. Last night while we were doing her brushing, she asked about her music. "Where music?" After an initial grumbling about using headphones 'all' the time, I think she is getting use to it.
This morning I was looking for a way to preserve the basil that I cut from my plants and the cherries that we picked last Sunday. Whatever the method, it had to be quick because gettting ready for vacation is taking up the main priority. I found a Storing Basil website, there were many basil websites. Who knew? Finding out about sour cherries was not as easy -- obviously, being a sour cherry expert carries no prestiege like that of the basil addicionado. I do have a bit of pitting work ahead. It seems like something that Julia would enjoy but just not before vacation.
30 July 2008
1. We really think the listening therapy is helping Julia organize herself -- does that make sense? We had some really figity days this weekend and to my eyes Julia's behavior was very autistic-like. Then, yesterday she seemed to calm down. David even commented that she seems like another child. She seems to be inhabiting more of her body. She is also building her vocabulary like crazy -- yesterday, she was upset not angry. This morning she complained about ant bites. When I corrected her that it was the mosquitos that were biting her, she corrected me and told me, "no, it ants."
So where is the bump here? Well, the headphones that we are using belongs to our rehab center. They loaned them for 2 weeks which already was more than they like to do. I am full ready to plop down my cash and get the kit, but the headphones are on back order until the middle of next month. I was really hoping that we could be using them during this next month. We have therapy today, so I am going to beg.
2. With all this forward movement, something has to give. Right? The give point is sleep. It is taking Julia enormous amounts of time to fall asleep -- starting bedtime reading at 7:45 or so and turning out the light about 8:20, Julia is taking until 9:30-10 to get to sleep. Ach! Since either David or I lay in bed with her until she falls asleep, this really cuts into our adult time. That is, we have NO adult time.
3. Julia is becoming a more discriminating eater. She doesn't want salad every night! She asks for noodles a few times a week; she asks for Nu-nu, meat with fat on it. So, okay, she is becoming a more normal 7 year old, but how soon am I going to be longing for those days when she would eat, without question, anything that was put in front of her?
4. And there is not bump here, but yesterday when I went to pick up Julia, she told me about her day -- well, really her lunch ("no, peanut and jelly any more") and swimming -- and carefully cut in half the twisler that one of the parents had brought for the kids getting off the bus. She was also easy to get going this morning and when we were walking to the bus she saw the bus counselor, Haley, about a half block ahead of us. She called out to Haley and ran all the way to her. This is amazing behavior -- recognition, calling out, deciding to run, and staying on task until she got there and hugged Haley. I guess the bump here is that I really want her to continue with the listening therapy so that she has gotten as much as she can out of it when we start family therapy when we come back from vacation.
28 July 2008
Still, Julia took some instruction from her Dad.
Julia got into the act, picked the sweet cherries, ate a good deal more than she put into her blue bucket, and had a good time.
The only reason I have for needing to resist so strongly is that Julia's sleeping has not been an issue for us. We have an occasional uncooperative night, but generally, Julia goes to sleep pretty quickly and normally. I think I wanted to hold on to something normal. Just that.
Thinking about it this weekend, I am rather shame-faced that I didn't just listen to Annie and change Julia's covers. I am doing that TODAY!
I had put the magna-doodle on her table to work with, the same think that she was working with the night that she refused to do the work that I wanted her to do which was writing numbers. No matter how many times I made a 4, Julia would not copy it. Last night, she safe down, picked up the "pen" and made a 4 and looked at me. I had not remembered and had not put the magna-doodle there to finish that lesson at all. I praised her a good deal for (1) knowing how to write 4, and (2) for giving into me even though it was five nights later. Oh my girl!
We then worked on letters. I made the sign for random letters and she wrote the letter. We had 18 letters by the end of this exercise. She had gotten 3 wrong. She even drew a rose for R before she made the R. Then I pointed to letters and she made the sound for it. The sound of the letters has been a weak point for her and she did not get as many correct, but she was able to give me more sounds for more letters than ever before.
The down side of this new clarity seems to be much more expressive anger. Julia is angry with me! Oh, I must be so safe for her to be so angry with! The trick of giving her choices when she is angry is still working at time, but at times, I can't even think of a set of choices. I lost it this morning with her as we tried to get ready for camp and I grabbed her roughly. She responded with such indignation. "Mommy, you hurt me," "Mommy was mean to Julia," "Mommy is bad." It went on and on. This was after she had been trying to hit, punch, kick, and spit on me, AND was describing all sorts of bad things that she wanted to do to me. Okay, the bad things were not so bad but she was very descriptive.
In the past, whenever Julia perceived that someone hurt her, she would go on and on about it for days -- poor Seth, who loves Julia, bumped into her one day on the playground and I thought we would never hear the end of it. Today, I apoligized for handling her roughly and told her that I would try to be better. She then forgave me (I think) and agreed to not hit me anymore. I don't think that such a truce will last for any amount of time, but she was much more reasonable when she said it.
Yes, we are going with this listening therapy. I expect there will be more positive and more negative behavior associated with her changes, but then again, maybe being clearer about her feelings and impulses will help us when we start family therapy at the end of August.
26 July 2008
Not a great picture of Julia but the wooden guy looked so good.
After an ice cream dessert, Julia finds a dino friend to ride into the sunset.
And a dino for Dad as well.
Julia on the stage of the Folklore Theater . . . a friendly place.
Julia considering a stone.
And now for the swings!
Swimming in the bay.
It is beautiful here! Yes, a bit touristy, but a very sweet, quiet, peaceful place. The bay side, where we are spending out time, is not intense like the Jersey shore. It was warm but not hot, bright, but not blinding. This is the perfect place to take a great big novel and enjoy a sitdown along the water front or on a porch with a view of the woods. That novel reading doesn't happen with Julia around, but there were beaches and playgrounds and goats on the roof of our dinner time restaurant. We will read some other day.
Maybe a few typed words will clear my head and tire me out.
We left Madison just before 2 and arrived at Sister Bay close to 7. Traffic and stopping for lunch were the culprits. The Inn is nice, but reminds me of a motel with wreaths. The innkeeper is not overly cheery, I admit that that is what I expect even though I understan that even the cheeriest of people have a bad day now and then.
Julia has been hyper since about mid-way up to Door County. This evening, she was bouncing off the walls and it was impossible to keep her still. This is really throw back behavior which could be caused by sitting for hours in the cars and also by not listening to his listening therapy in the early part of the day. Many more words today, and more expressive, much more.
Gosh, I haven't taken a decent picture in days. Weeks! I better get at it this weekend.
25 July 2008
Anyway, I have packing and straightening and hopefully we leave about one. We wil pick Julia up and wisk her away.
Door County is in the north east tip of Wisconsin -- sort of like Maine or Cape Cod, at least this is what I have been led to believe. I am hoping for less mosquitoes -- lumps on lumps these days for both Julia and I. We are staying at the Nordic Lodge and hope to walk the lake and bay beaches, amble down quaint streets, and eat some good food. David is really looking forward to the break -- our pre-vacation, vacation.
Julia's behavior this morning was very good. We did get the to the bus stop first -- the bus was there but no other families. I wondered whether this has anything to do with her behavior. We eased into school last year by going to the playground early and swinging. Maybe it is the security of being the first at a place and in some way marking her turf. She did greet everyone who arrived and rambled on about what was on her mind. All the parents were giving her thumbs up for getting on the bus without a problem.
24 July 2008
We are into out second week of trial for the listening therapy and I need to keep notes on what might be attributed to using it.
1. In the car this morning, Julia told me very calmly and succiently that she loved her little dog, Latkah, that she wanted to pet her, and that she wanted Latkah to stay at the puppy house. Julia has never had an easy relationship with the dog, rather it is one of fear and sibling rivalry. I wonder if this change of mind heralds a new time for Latkah.
2. It was easy to get out this morning. Julia did not take issue with hair being done, teeth brushed, or head phones put on.
23 July 2008
Julia adored Lisa's kids, all older than she is, and all patient and kind to her. They played with her, let her play with the biggest box of lego she ever saw, showed her video games (one that was about pinatas and planting a garden), and indulged her like crazy. She does need this kind of interaction on a more regular basis -- being with kids who like her and who give her a break when it comes to communication and being absolutely normal.
At the picnic, we saw two of our travel buddies. The girls are all growing, and China seems further and further away. Maury and Better commented on how big Julia was getting, and it was good seeing both of them.
A few days before we travelled, Julia began working with a therapeutic listening program. She listens to Mozart through special headphones. The music has been altered and certain frequencies added. This program does not work for everyone, but for those that it works for, there are some pretty amazing results. Annie, our OT, is hoping that the program might help Julia to modulate or regulate herself. If Julia had more control over her impulses and distractions, her behavior would change. She might be able to follow directions without getting lost, stay on task when I ask her to do her letter work, listen to directions on her favorite video games.
We were supposed to use the progam for a week and then decide whether it was doing Julia some good, but of course, after a week, it is hard to tell anything. Plus, I did not keep notes on anything that I was seeing. So, we are on trial for another week.
Julia did get dressed and was more cooperative with getting getting dressed during this week. She was more compliant with my directions during the weekend, but that was only when we travelled and she was back to normal on that once we were home.
I also wonder how this therapy would look from an attachment POV. If Julia's distractability is caused by hyperviligence, will listening therapy do any good. Will it do any harm? How powerful is working with the vestibular system?
Julia has had an awful rash for two weeks now. Rash, plus bug bites, and she is insane with itching. It is most difficult when she is trying to go to sleep. We have done lots of home remedies. Her back and chest are pretty clear, but her arms and legs are still disaster zones. I have to call the doc tomorrow and see what we can do for her.
Maybe as a result of extreme itching, Julia was really unable to concentrate on her work tonight. I could not get her to copy numbers when I wrote them. I did get pretty frustrated with her and asked David to take over and give her a bath. Hopefully, we will get rid of the itches and back to regular work.
We think Julia's language is becoming more expressive. Of course, I notice this when she tells me she is angry with me and how she will punish me. She also calls me a "very, bad mommy." I correct that last point and tell her she is using her words well. At least, she is not hitting, biting, kicking -- just talking about it.
Julia has put her foot down at times and refused to get ready for camp or refuse to get on the bus. It does not take much to change her mind. Is this more resiliance??
I haven't written about the garden here although I am working on a garden blog that is mostly pictures right now. I pull weeds and muck in the dirt to find out what I am thinking, and it works every time. This is such an odd freedom. For a long time, I really wanted to see what being a SAHM was like -- like all through Cheshire's growing up. It was impractical and financially impossible. I am not complaining about working, because I really like to work and be involved in the world to the extent that I am able, but at the same time, I wanted to see what life on the other side of the track was like. I wanted to see if the grass was greener. Well, my grass is greener with me home to water it.
And so, I have been a SAHM for a year and a half now. Umm, I didn't expect to do it for such a challenge of a child. I have to smile. When else?? I didn't expect to have the chance to do it while I still had to worry about finding a job and working. And it is not just the money that worries me. Of course, the money is a worry, but more I am worried that no one wants this old lady. Oy.
How old could I be? I can parent Julia, and learn more about parenting than I ever had to. I could learn anything! Including some new standards and procedures for some legal work.
Gardening: This is an interesting garden. I have plants that I would have never bought and many that were part of my old garden. This is a more work intensive garden work than what I had in Indy because there I planted an "easy" garden. The plants were probably not as exciting but I did plant what I liked as long as it didn't need to be dug up or fussed over. The last gardener overplanted in the front garden beds and did not do enough for the back. I spent the last few days digging up stuff in the front and moving some of it to the back. I will also move plants within beds -- like moving the big plants to the back of the beds so that the little plants can be seen. Why does that seem so simple? Why didn't MJ do it that way? There is also one bed, mostly in the shade that is planted in sort of a prarie style -- not the architectural style, more like lots of grasses and messy plants that lean towards the sun and fall over on to the sidewalks. I am moving the grasses to the back garden. I am not sure what I am doing with much of the plants. I might just pull the ones I don't like. In the spring I found a good deal on two small Rhododendum bushes. I put one in this prairie bed where there was an empty space. That plant is staying and I hope to see it grow big and flower.
As for the wisdom the dirt taught this week. I will do more volunteering both at school (get into Julia's classroom this year. It was my own decision not to spend time there last year) and with some group providing legal help for the underrepresented. And get back to changing the house in small ways -- maybe repaint the kitchen and back hall, and the blue window in the bathroom.
17 July 2008
She could not blow out candles on her sixth birthday cake. Now, no trouble at all.
And so proud of herself.
We bought her the little pet shop play house much like that pet town that daddy had promised her last winter when they started working on ABC's together. When she finished learning with Daddy, David asked if they should go out and get the pet town. She said, no thanks.
Excitement is beyod belief. She has been thanking us for her cake and gift since last night.
Yesterday was Julia's half year birthday. I smile as I remember that one year I let my birthday pass without mention and some of my friends celebrated my half birthday -- so very sweet. Julia just started understanding birthday - as in, the day you are born -- about two months ago after the last class birthday party of the school year. We have been talking about her half birthday and even though I doubt whether she understood the concept of half, we decided to go for it.
After OT yesterday, we went to Whole Foods and picked out a much too expensive carrot cake (kid has good taste). When we got home, I worked on her alphabet work with her and she earned her last two of ten stickers to get her newest two LPS pets -- two little kittens. Then she took an aveno bath (still with the rash, though better, and lots of bites), as I put finishing touches on her favorite supper food -- bok choi with Udon noodles. We had supper and settled down to a movie, stopped part of the way through and had our cake, complete with candles and singing, and we gave her a present -- the LPS fun house.
She was beside herself with joy. She thanked us many times, including the last thing before she went to sleep and first thing on waking up. Gifts are still an incredible unexpected surprise to her and they make her very happy. "I girl happy!" she tells us.
Julia had a hard time getting to sleep last night and did not really bed down unitl almost 10:30. By that time I had been dozing and waking, and was not ready for bed myself. I stayed up and watched a great tv program about searching for Atlantis and looking for it in Bolivia at a site called Tewanaku, which is the ruins of an ancient Andean civilization. There are over 3000 ancient civilization sites in S. America most of which have not been explored and no one knows much at all about the civilizations. By the time the Europeans came over, these civilizations were long dead and the explorers/invaders had no interest in what the people remembered of them. And so, even the stories about the civilizations disappeared. I can't help but think of our European-American modern civilization without the stories of Egypt, Greece, and Rome. What if . . . what if.
Well, good transition into the heavier stuff.
I have been feeling the tug to do attachment work with Julia. Why? Well, probably because I read too much. No, more likely, I read online and books just enough. I know that Julia's behavior still baffles people who should know kids on the spectrum, and although everyone says tht all kids with autism are different, the bafflement of Julia's teachers and therapists have nudged me on. Coupled with that, I think I have an internal timetable that is dictating something about our two year anniversary as a family of 4. I joined the yahoo group for attachment/china adoptions and have almost finished reading the Connected Child. I was further drawn in by the warning, from an expert, that the intensive autism therapy which is behaviorally based (and for which we are on a long que to be offered) is not good for kids with attachment disorders, so it is important that in the next 18 months or so, I tease out the threads of attachment issues or at least investigate them before we get into the 20-30 hour/week commitment of autism therapy.
So, now I read about attachment and trauma, and can see how Julia's behavior could be described as the result of those experiences. I hope that our new therapist -- family shrink -- is sufficiently expert enough to help me on this journey.
What a puzzle, this child.
16 July 2008
So, was that it? Maybe.
Even her delay this morning was not so bad. I wanted to walk to the bus but driving was not so bad. The bad part started when she sat on the ground and said she didn't want to go to camp, thank you. One of the parents later commented on how clear and articulate Julia is in her anger. Okay, that is true. She tells it like it is and this morning she didn't like me and didn't want to do what I ask.
I just called camp and the bus counselor said that after 15 minutes she was smiling and fine. She is being a bit quieter than usual at camp, but no problem. They will call if anything comes up. (What a great place!).
Ah, something that just slipped my mind -- today is Julia's half birthday and we were going to make a big deal about it because she finally understands about birthdays. After OT this afternoon, I was going to take her to buy a little cake, cook her favorite bok choi supper, and give her a present. I hope that her afternoon mood can take that.
15 July 2008
Yesterday, at speech therapy, Carol took out a matching bear game and Julia played it like it should be played! She turned over two cards at a time and even remembered where a few of the cards were to make matches. She still needs help to not turn over more than two at a time, but the exciting thing was that she was very excited when she got a match. I think that more matching games are in our immediate future!
12 July 2008
I was looking back to last year at this time and to two years ago in 2006. In 2006, we were waiting ever so impatiently for our travel approval so that we could go to China to adopt Julia.
Okay, Julia is supposed to be using a swimming noodle to practice her overhand stroke. She is hitting the water with the noodle and making very loud sounds. I take back that sign – no, not really. If Julia make the olymic swimming team, heck, when she graduates high school, we may be inviting Allen. I say over and over, but it is so true, that we have been extremely blessed by those who are helping educate our child. God, the gods, the universe, my angels – someone or some power – is looking out for her. Of course, I am reminded again that I should be working with Julia outside of class on what she is learning to make her more compliant with Allen by giving her more confidence and knowledge.
A year ago, we were unpacking and trying to do something constructive with Julia's defiant behavior. I was worried and wondering what was going to happen when school began. We started going to the school library to get her use to the building. When did I start cheering “Franklin School, the best school in the world!” each time we passed the school? These days, Julia was say that once in awhile when we pass the school – ah, brainwashing! Would my teaching count as torture? Ha.
A few ideas from the book I am eating up – one is to use consistant terms – short and consistent. Cheshire favorite – On task! -- is a good one, and yes, I use it with Julia. The author using “redo” as a way to correct behavior and offer a child a second chance to change their behavior.
One critisism of the book, there are a few examples of a parent doing a good job getting their
child to change their behavior. The senerio is so happily on target and pleasant and in a convenient time and place, that it is hardly necessary to do at all. I know it is just an example, but I wish that they would acknolwedge that the perfection just doesn't happen. Julia is much more apt to behave badly two minutes before we need to leave the house, on the stairs, in a packing lot, or just as we are leaving a line at Target, than in the middle of the afternoon when we are alone without distractions or outside pressures. I have stopped in so many public and inconventient places to correct her behavior, but it is never easy, and would kill a parent who is easily embarassed. And for her part, once Julia has started her bad behavior, she is not one to give it up without a tussle either verbal or physical. The notion that I could just bend down and say in a soft voice that she should “re-do” her behavior showing respect to me or to whatever she has shown other behavior to, is a true fantasy.
And I need a new bathing suit for that girl – maybe two to last through another three weeks of camp and then vacation. The one that she has is beginning to really stretch out. Julia wears a bathing suit every day and it is amazing how quickly it wears out.
This morning, I slept in and David let Julia watch Saturday morning cartoons. I insist on PBS – task master mom – but a morning of Tom & Jerry, violent as it is, will not destroy her. We were just about ready to turn off the TV when a Spiderman cartool came on. Julia hates Spidie, and she called to David to turn off the TV. I told her she could turn off the TV (which she is fully capable of doing and has done many, many times), and she did. We then talked about how she never needs to be scared of what is going on on the TV. She can always turn it off when she doesn't like what is on. I know this one is going to come back and bite me, but I am also looking for places where she can have the power over her fears. Spiderman and TV is perfect.
We went to the Madison art fair after swimming. We went last year as well and it is easy to compare Julia's behavior. She listened so much better -- hard as it is for most art a child has to look with their eyes! She had to be careful of things that break -- and of course, those are the things she wants to pick up and hold. Lots of interesting ceramic and clay pieces that she identified as made of clay. She liked the things made out of glass as well although she doesn't understand glass that has lots of color -- well, neither do I. She has a lot to say about the art and it was almost a joy walking around with her -- not a joy in that I am sure my blood pressure was a bit higher than usual, and I was physically holding her back from touching at times. But she will never learn to look if we don't go.
There were also kid dance troupes there performing. Once school (and I am sure there are more that this one), breaks their troupe into "teams" and compete. Compete and dance? Oh, I have a bit to say about that -- dance is not sport, but someone wins gold, silver and bronze. Oh, I am an old fashion puerist. Dance is art and the children should be trained to that. But American kids are taught to compete and I guess if there is no competition, you students get siffened off to do more competitive activities.
Julia body rash of last week is getting better. Slowly. I kicked it into high gear a few days ago with Aveno oatmeal baths, a menthal anti-itch cream, benedryl at night, and a steroid cream used sparingly. I also did not put sun screen or bug spray on her first thing in the mornings for camp. I spray her clothes for bugs and the counselors put on sun block right before she goes into the pool. She has gotten darker, so the lack of sunblock is exposing her to more sun, but her skin is getting better.
11 July 2008
Story short, she enjoyed Wall-e, and talked about it all the way home.
My newest reading is The Connected Child, by Karyn Purvis (and others). It is about adopted kids with troubled backgrounds who have special behavioral or emotional needs. The topic is sensory intergration deficit, and reading the descriptions reminds me so much of Julia. I would rather not play the game of re-diagnosing her, but I will figure out what the differences in treatment would be.
10 July 2008
I am still in the "do what you must to cure this child" mode. I still expect that if I work very hard with Julia and if she goes to the right therapies and maybe even eats the right food, that one day she will catch up and wake up perfectly normal. But already I have in my vocabulary words that define and explain her behaviors, her differences, and our expectations -- stimming, neurotypical, and more. I find it hard to let go of the idea of normalcy and without even meaning to I find myself comparing Julia to other kids who have been home for longer or less time than she has been. Will she look like Betsy when she has been home for 4 years? She is surely beyond where Sarah, who has only been home a year. Neither of these kids has Julia's challenges.
Last night, I spent some time trolling the web to find blogs of other parents of autistic kids. I see myself in the "cure" people right now although I suspect that I will need to move on. Let go of my fantasy and root myself firmly in the camp that teaches their children to live full lives and glories in their children just as they are. You would think that as a life-long stutterer I could do this without any problem, but I am just like everyone else who wants the perfect child, who wants my child to reflect the best of me, of us, who yearns for my child to stand out in only good ways, and who does not really want to be challenged. The blogs that I read are written by expert parents -- parents who have researched and lived with the challenge of kids on the spectrum. I am still an amateur and I am humbled that Cheshire was born, raised and grew up pretty well with parents who just did not have to work so hard.
Yet this work that I do with Julia is so willingly done -- as if I had been waiting my whole life for it to begin. I might just be that without paid employment right now, I need Julia's development as my mission. Well, if that be so, it is okay. Then again, I think about those red thread connections, some god who places kids where they belong, and a universe where energy is not wasted. I am still interested in prognosis, always interested in prognosis so I can make my plans for Julia, so I can dream of her accomplishments, but I see that I must turn to the day-to-day doings and make my goals more immediate. I need to allow the future to occupy its own time.
Working on L's this morning, I asked Julia to draw a picture and to include a picture of something that started with that letter. She immediately said, "lazy lizard," and I was very pleased. She heard the term on the little bit of Sesame Street she saw, but no matter at all. She remembered and she used something from another situation -- both remembering and using what she knows seems like very good skills.
Julia is learning letter using that her teacher calls putnik cheers -- the sound of the letter, words starting with the letter, and saying the letter itself. Example: b - b - b, bouncing ball, B. While she says this, Julia makes "B" in sign language. We say all of the cheers that we know everyday and Julia has about 18 letters down pat. Now, I want to take that apart and have her give me the sign, the letter, or the sound when I ask. We started that tonight and she did a decent job with the signs and the letters. We need to keep working on the sounds.
Julia and I didn't get out of her evaluation until almost noon. I was going to bring her to camp for the afternoon, but when we got into the car she said, "I not go to camp today, mommy. We go zoo?" I allowed myself to be pursuaded and we had a pretty lovely afternoon watching the otter, the monkeys, the seals, and three very tall giraffs. Watching a giraff spread his front legs very wide in order to reach down and eat some grass was pretty awesome. Julia's attention span watching the animals is very long -- seals, loins, and monkeys had so very much to say today in wild, ringing voices and Julia loved that.
Sometimes Julia says she is "very so happy." Then again, sometimes it takes her forever to fall asleep at night. Pretty regular kiddo.
09 July 2008
Thank you, dear readers and visitors, who drop in and leave messages or emails. I do feel at times bouyed up by the support and advice. And sometimes inspired -- last night, I was working with Julia on a sheet that asked her to count the words in a sentence. We have been working on letters and sounds and have no done any math to speak of -- unless, counting stickers counts. The work sheet presented a sentence and a choice of 3, 4, or 5 at the end to circle. Well, Julia did not know 3 and 4. So, we went over these over and over again. It seemed like a much more than necessary amount of times. And I was losing patience and I could feel the frustration mount. The lovely messages about how patient I appear to be came back to me, and yes, made the difference. Excuse the excess of sappiness. But I could feel the support that I have been offered and felt the core strength to live up to what others say that I have.
And if Julia knew, I am sure she would thank my supports from the bottom of her heart. LOL. Who needs a frustrated mommy!
Julia watched part of Bambi last night before bedtime and this morning she tried telling everyone at the bus stop about the movie. In her own way, of course. which means that she was talking about rather random parts of the movie without identifying that she watched a movie, the movie was Bambi, and that she liked the story and wanted to share it. Rather, she talked aobut the two deers fighting for Fileen, Thumper sleeping in a log, and Bambi skating. In part, it breaks my heart watching her try to make her version of conversation when other kids don't really know how to respond to her. In part, I see that I can coach her at home or when we walk to the bus, but must let her fend for herself when she tries to be friendly and relate to other people.
I am going outside to edit those flower beds and plant more grass seed.
07 July 2008
06 July 2008
Julia and I spent the afternoon swimming. Last year, I was Julia's only playmate in the water. This summer, Julia likes to try to play with other kids. On Friday, she was able to find a little boy who splashed and chased her, and she did the same. Not all kids take to Julia direct manner of speaking and invasion of their space, and so some kids shy away when she approaches, but she tries nevertheless. Her stamina is to be admired. I was never that brave. She remains a people person without the proper skills, but she will figure them out. We have an appointment for an assessment at a clinic which could provide intensive ABA services to Julia (if and when our turn comes up). This clinic also has social groups for high functioning autistic kids. I am hoping that Julia can get into one of those groups. I am not very good at social leading and modeling -- I could use some coaching myself. A class would also provide other kids. I didn't think that would be such a big deal, but I have no been very successful in finding kids who would be willing to socialize with Julia.
Julia has a rash all over her body! Ugh! Poor kid, she is incredibly itchy. Yes, I gave her some oral and topical meds, but I had to stop brushing her and she is still uncomfortable. I am guessing that it is either the sun screen or the bug spray. I put her in long pants today and hope that she will not roast at camp. A few chemical-free days would be a blessing. Anyway, I think so. We had this same rash last year, and it went away before we could get the appointment at the doc. Of course, there was no answer on what it was but it was the same time of year and similar circumstances.
Now for the weekend!
Marcia and Matthew came up for the Fourth, and Matthew's aunt and uncle from Chicago were also visiting Madison. We had a very nice dinner that I so enjoyed cooking. The dessert -- this chocolate raspberry creation (just copied from epicurious.com) was a great hit. Julia and Matthew almost licked their plates clean and asked for seconds. The rest of us just wished we could fit another bite into our over extended tummies. I miss planning and hosting little get togethers and bigger parties. It is time!
On Saturday, we had a fun Wisconsin day. Julia's swimming lesson, followed by the Madison Farmer's market, good pizza, a trip to Baraboo to visit the circus world museum, and out to eat.
Julia's swimming lesson went very well -- better than most others. She is getting to do more and more of the activities that her instructors ask her to do. I hope this continues. I have gotten lazy about going over her lessons when I take her swimming. I know it helps, and I have to pick it up again.
We spent the afternoon at Circus World in Baraboo, about an hour north of Madison. Baraboo was the home of the 5 Ringling brothers of circus fame. The museum is a great place for adults and kids. We saw two shows -- a small circus and a wild west show. Julia got to ride a camel and an elephant, and also to eat pink cotton candy for the first time. (Cotton candy use to be a once a year treat for Cheshire, and I think the same rules will apply with Julia.). There was a great history and poster exhibit that we breezed through (another time, I will get to read the entire thing), an animal tent, and very cool costume and wagon exhibits. The whole campus sits on the banks of a lovely running brook and the small town of Baraboo is just around the corner. Charm -- real, not manufactured -- just oozes from every flower bed. Julia did very well because the spectacle and sound was on human level. She can take a good deal of stimulation now, but the mega-stimulation of big movies, and I am sure big theme parks (although we have not attempted one of these) is just too much.
Kinda funny thing -- There was a lot of shooting during the wild west show and after the show when the performers came out to meet the audience, Julia scolded one of the cowboys for shooting, making noise, and hurting other cowboys. He promised he would try to be better!
Julia also was able to meet Annie Oakley. She was pretty much in heaven. I think looking for a book about Annie is in order.
And just to note, while we were feasting and visiting this weekend, our intrepid Cheshire was also doing some historical visiting of her own. She attended the International Hot Dog Eating Contest held on Coney Island every year since 1916. (The link is to a new article if you want to see picture -- of hot dog eaters, not of Cheshire.) Nice to see her furthering her education and exploring NYC on her days off.
03 July 2008
I should have known better.
I have a bunch of things to write about this morning so this might be long if I get them all laid out.
First, we had a tough beginning of the morning today. Julia woke up at 6:30 and started demanding. She wanted to go downstairs, she didn't want to say good morning or please, she didn't want to get dressed, she didn't like what I had picked out for her to wear, she hit and kicked me. Whew! And that was the first 10 minutes. We worked through this -- I sat her in the middle of her room, was stern (not hurting, mommy, etc.), told her to pick out clothes and to dress herself while I got myself ready for the day. Amazingly, this worked, and we went downstairs together in a pretty good revised mood. She had breakfast watching Super Why on tv (I thought it was Super Y, but no. And watching tv during breakfast works for us right now because I want her to see this show.) We had time to do our alphabet lesson and Julia worked pretty hard because a sticker this morning meant she got her hands on the brontosaurus that has been siting on top of the frig for a week or more. After that, teeth brushing and hair combing and skipping to the bus stop were just a delight! Reminds me of the advice in Julia's orphange report -- when she is angry or upset, give her what she wants. However, even though she got what she wanted from me, she did have to work hard and long for it. Our "and" lesson of two days ago didn't go well. Lack of attention or not being ready for it -- I don't know the reason, but I withheld the two stickers that she needed to get the dinosaur that night. Oh, she was angry, but this is a lesson -- patience, forebearance, and earnings -- that she desperately needs.
And Julia could not wait to show her counselors and the kids at the bus stop her dino, not that many of them were interested.
Next topic, my frustration with the experts. I wrote this missive on our local autism yahoo board to another expert. This is in response to her response to my asking about diet and supplements and institutionalized autism. She suggested that I look into sensory integration dysfunction. I said:
Thanks for the web site. There is lots to read and digest there.
I don't want to impinge on your professional standing, but I hope I can ask a general question of you. From what I've experienced and read, it seems that those who speciality is the spectrum and not necessarily trained to recognize attachment problems. Likewise, attachment therapist do not seem to recognize spectrum behavior. We work with an OT and a speech therapist for sensory issues and communication. We hope to be working with an attachment therapist in the fall (waiting lists, Bah!). My daughter has an IEP in place for next year that recognizes and addresses her spectrum challanges. But how does a parent make any sense out of what the experts say?
Actually, at our 6-month and 1-year social worker visits, we were told that Julia looked great. She was coming along, she didn't seem to have any challenges that were out of the ordinary for relatively healthy kids coming from China. We felt reassured that that. But we were uneasy, because we didn't her as responding to us and learning in any way that we considered normal. That's when we began our search for help and answers.
Now, that we have gotten some answers -- a Waismen Clinic eval which says PDD-NOS, we hear that attachment therapy should have been pursued earlier, or, like you say, SID. Our social workers are of no use, our doc will refer if we want but is of no use, even the international adoption clinics have no concrete advice as to how to sort through what we consider challenges with our daughter. So where? And who? Sorry if my tone is rather frustrated, but I am. And I am sure that other parents get frustrated as well. Is there anywhere or anyone who can give a family a whole-child picture?
Or does it matter? Are the therapies and treatments so similar that sensory issues will be worked on with an spectrum diagnosis, and attachment challenges will be addressed during therapies that deal with sensory issues?
If you have any answer at all, I'd love to hear it.
Thanks, and sorry for the tone,
We shall see what answer I get. I am frustrated these days about this. I am willing to do the research, do at home work, take Julia to anyone, but somehow and from someone I'd like some idea whether I am on the right path. Certainly, I don't know, and I can't even expect myself to become an expert in any of these things, not to mention all of these things, overnight. Each possible cause for Julia's delays and behavior -- attachment, sensory integration, autism -- have mounds of reference books and scads of therapy theories and options. I have no idea how to chose. I fumble along, pursuing the autism waive from the state which will give her intensive ABA therapy, pursuing a social group, doing the brushing protocol and later this summer a listening protocol, and in the fall begining attachment therapy, but I have no idea where any of this is going. And when is this kid going to have time for music lessons?? Or kicking a ball around. Just the thought that we might be in 3 therapies apart from school that all would like to be schedule during the school day drives me nuts. And I am not working! What happens when I have a schedule apart from Julia's?
Third, and last thing I just need to spill out here: Complusions. I talked to Annie, Julia's OT therapist, a few weeks ago about Julia's drawing and clay work. Sometimes, most times, she gets so, so, so into her work that it is hard for her to move on to other things. I wondered outloud if we should limit her time in an arbitrary way -- a timer, a certain number of minutes a day -- but Annie said that Julia's art work may also be a calming influence, her self regulatory behavior, and to take it away could do damage. I tried to wrap my mind around that, and understand. I couldn't until this morning.
Walking home from the bus stop, a light went off. I am the same way. I dig in my garden and write to self regulate. I can be in the worst of moods, but give me time in the garden, doing the most mundane chores and I am righted. And it is compulsive as well -- It is killing me that I promised myself not not do any major redesigning in the garden for an entire year. I itch to rearrange and put in new plants. I can't help but think about where I would put evergreens, how I need to divide and move the clematis. These ideas just jump into my head and I am off with them. I am the same way about writing -- I need to do it if it a journal or my attempts at fiction. This doesn't necessarily mean that I am good at these things -- I am not awful, but I am not a truly gifted writer or gardener. I am adequate at both, but the sheer joy at seeing words on a page, or a rose bloom and doing the work to make it happen invigorates my spirit.
Is this way Julia's draws and makes her little annimals.
02 July 2008
01 July 2008
In late August, Julia will have been a part of our family for 2 years. Her first impulse with a crayon was to put it in her mouth. She had no idea of how to hold it or what to do with paper or coloring books. Last October, Julia was still making huge archs of color with pencils, crayons, and paints. To get from that to what she does today, of which the above picture is typical but not her best, is incredible to me. And we have merely provided the tools. It is her perserverence and her vision that guides her.
When we got to the bus stop, she did a lot of yelling -- No bus, I hate bus, Julia go home, Julia not go camp bus. Anyone who didn't know she was capable of that behavior, knows now. Yes, I can still be a bit embarassed. I speak calmly to her but try to enforce and re-enforce that message that she is getting on the bus and going to camp.
I think that I see her give up a bit -- her bravado blows over, and she is ready to bow to my will. Oh, the delicate line between teaching her and breaking her incredible spirit. I am hoping for the first, and expect that she will need the later to fly into her adult life. She finds some sticks to play with and eventually when it is time to get on the bus, she happily gets on and waves as it pulls away. She scares her counselors, but I tell them that when she has mornings like this in school, she is usually good as gold the rest of the day. At least, that's what her teachers tell me.
I received lots of answers to my question about diet and supplement and autism. I have to write lots of thank yous and have a chunk of research to do. Cutting out food from our diet is something we can just try ourselves, but giving Julia supplements is something I pause at. Maybe we need a doc visit once I figure out what looks good.
We have been making headway on our letters and also on reading our first two sight "words" which are "a" and "I." Making her read these words as we read a book at night can slow down the action, but it also makes me realize how frequently she is focused on the printing in any book. Not much in general, but sometimes I get her attention quite well. It can be amazing how few A's and I's there are in a story.
Today, I'd like to do her evening lesson on another sight word. I am thinking of adding "and" to our list. I notice lots of and's in stories.