meds

Today will be Julia’s third day off her large dose of Concerta. This is the first time in years that I’ve dared a medication vacation. The reasons are many although as I think of them, more than I am comfortable with involve selfish motives. Life before meds was pretty difficult.

For the past two days, without concerta, Julia has had a harder time concentrating — going upstairs for something forgotten and actually coming downstairs with the item in hand. She has sung more, been more affectionate and much more thoughtful — offering to share pieces of a limited amount of candy. She has also been exhausted at the end of the day and ravenous both at meals and in between. On Thursday evening, her first day without the concerta, she was able to practice cello. She was a bit distracted but we worked on long bows for half notes which is quite challenging for her right now. She did it correctly by herself once or twice. We also practiced on Friday after supper and she needs more time to understand the long bow of half notes, but again she was very willing to do the tedious part of practice — playing two or four or six notes over and over until the concept is physically understood.

During supper last night, we watched Star Trek and she may have watched with heightened interest and more emotional comprehension.

We went to the school movie night last night which amounts to a big room full of elementary-aged children sitting/lying on gym mats eating popcorn and drinking lemonade. Not everyone is quiet or polite or still, and parental reigns are somewhat loosened. Julia did chat with her neighbors — two special girls who genuinely like Julia, and a few others who sat close to them — and was squirmy at times but no more or less than she is on her meds. She was generally well behaved and listened when I called her attention to distracting behavior.

Her special ed teacher commented in today’s email: Julia very talkative these last two days, in fact on Thursday she kept putting her hands over her mouth as if to try to stop talking or remind herself not to talk. Very bubbly. Very tired in the afternoon, in fact both days I gave up on activity as she could not function – too tired, closing eyes, asking to sleep or making a comment about not being able to do it.

One of her SEA’s (special ed assistant) commented:

02/27 – There was a lot of talking out during classes and also some growling noises. Also a high pitched laughing at times. (however the laughter was appropriate for the setting). Her legs and feet were constantly swinging. During Cops, she started pulling her hair out of her ponytail and scratching her head. I gave her a post-it to fold. She wasn’t defiant at all, just needed more reminders to stay focused. Just seemed like she couldn’t sit still.

02/28 – J did very well working on her math test this morning. She listened and followed the directions. On her way to gym, she laughingly told me she wanted to hide in her locker. I told her that wouldn’t be a good idea. She laughed and asked me if she could do it later. I’ve also noticed more direct eye contact in the last two days. She smiled and laughed more as well. She participated in a game during gym for the entire period and really seemed to have fun throwing the balls at the target. When she collected the balls to throw, she shared some with her friends. Usually, she doesn’t seem to enjoy gym and doesn’t participate for the whole class. She seems to be more socially aware as well.

I want to share these and further observations with her meds doc. Part of my reasoning for not even trying to adjust medication in the past has been that I didn’t want her to move backwards and wanted to give her the chance to experience as much learning and companionship as was possible, but it may be time to dare change. In addition, she has an adolescent body now which is growing, sometimes at an alarming rate, and I am in a much better place to manage and observe who she is and what she is doing.

Posted on 1 March 201422 April 2016 by Suzanne Buchko 0

milestones

Julia surprises: Two nights ago, I was tucking Julia in and she asked me how old two of her classmates were. I told her that they were either 10 or 11. And then, she told me that one of them had read book 5 of the Harry Potter books and the other had read all seven. She added, “and Julia Potter is 13,” and gave me her most suggestive look. I had to laugh at her. I wanted to send up flags and flares in celebration. Julia was actually comparing herself to her classmates! Comparing for the first time ever, at least expressing it to me for the first time. And she was using her classmates as examples of what she wanted to do.

I know that kids much younger than she use this tactic constantly and for almost anything that they want. Julia has never used it before. So much opening and discovery went into that simple exchange. I get close to allowing her to read whatever books she wants to!

Tonight, Julia got ready for bed in time to spend some time reading. She is reading one of the American Girl books — Meet Josephina, I think. I was in my own room reading and Julia called out to me asking if we could buy the book about the Shashawnee Indiana girl, Kaya. She had told me today that she was reading that book with another girl in school but I had not realized that it was an American Girl book. Julia makes connections between and among books regularly these days.

These are small milestones in a typical child’s life. Milestones that I hardly noticed when Cheshire passed one or the other. It was hardly an occasion to become aware of a new skill, but for Julia! It is miracles. And I am very grateful.

Posted on 28 February 201422 April 2016 by Suzanne Buchko 0

boxes

Last night, during a 45 minute sit, the idea that I have lived all my life in boxes that were like the shell-homes of sea creatures who scavenge used shells came to mind. None of the shells fit particularly well, some were awful fits, but I have been so long with these make-do definitions of myself that I no longer remember what it is to be comfortable, to be real. I don’t really know who I am. I cannot define myself and I am baffled to explain how others see me. I could have said this, realized this years ago but I would have then blamed my parents, my mother specifically for trying to force me into roles that I was not made to play and for never supporting those roles which were intrinsic to me. Perhaps that is true for the earliest boxes but I need to claim responsibility for many, many of the ill-shaped definitions of myself. I have inhabited shells of so many sizes and shapes when I could have designed my own. I have not defined myself in my own terms for so long that I have no idea where to start.

I am both eager and scared to leave my ill-fitting boxes behind.

Julia will be fit in no existing box. We are studying for her social studies test tomorrow. The topics are the Articles of Confederation, the Constitution, the Amendments, Manifest Destiny, acquiring the west, wars with Mexico, treaties with Britain and the Trail of Tears. She has memorized the answers to about 40 multiple choice questions. I am not sure how much she understands. Then again, what did I understand about unreasonable search and seizure and due process in fifth grade? She is compliant about the work of memorization that we’ve been doing all weekend and again today. If she was a typical child, I would not question the importance of the learning. I would figure, I did figure with Cheshire, that she would understand in time and the fifth grade test was a training ground for when her understanding would mature and she was able to respond to questions from understanding and not memorization. So, should I be questioning this with Julia? I do.

Sitting at IDS during Julia’s therapy time. Another child, a girl at least as old as Julia, perhaps a bit older, comes out to see her mom. She is teary. She hates group. She does not want to participate with the other kids. There is one kids she particularly dislikes (she doesn’t say who). Her mother calms her down and eventually she goes to talk to the people at the front desk. She has returned to calm and she can explain her unhappiness to her therapist.

I compare this girl’s behavior to Julia’s and wonder if Julia has the awareness to do what the girl did. I don’t think so. Not now at least.

We are working on math word problems. I feel like I’ve been here before. We worked on the easiest word problems before she had all of her facts. Now she has her facts but figuring out what operation to use for a problem is still challenging. We work slowly through each one. Ex.: J has 6 bracelets. B has 4 bracelets. They put them together in a bag. How many bracelets are in the bag. We draw it out. We use little cubes. Deciding on addition is far from automatic. Still, she does know that 6 + 4 = 10. If we can get to an operation, she can do it.

I worry. That I see a limit. I worried that she would never count. Never add. I might learn from that.

I would like to rid myself of worry, of constantly casting into the future. I cannot see any use for it. Especially with Julia.

Especially with me.

Posted on 24 February 201426 April 2016 by Suzanne Buchko 0

daydreaming & ego

Random thoughts through morning meditation and now during breakfast.

Last weekend’s conversation with Julia before meditation:

Julia: Can I think about Harry dancing with me at the Yule Ball?
Me: No. This is a time to think about your breathing. In and out. Blue and green.
Julia: No daydreaming?
Me: You can daydream after we meditate.
Julia: Ok. I’ll do that.

And it dawned on me that she knows, at least on some level, how to control her mind. I have wondered about this. Wondered if Julia was doing anything close to mindfulness when we sat in the morning. Sometimes we are quiet, sometimes I ask her to visualize colors and track her breathing but I don’t really expect that she does. A long time ago I decided that sitting quietly with me would be enough. This is not lowering my expectations for her but deciding that practice, whatever it was to her, would come far before meaning. Intention in this case starting on the outside and perhaps working in.

A simple exchange and perhaps something amazing.

I got an email today about a research project that is looking for participants. It is focused on caregiving for the caregiver and includes meditation. For a moment, it was like a knife through my heart. Umm, just a bit of hyperbole. Someone else is doing what I want to do!! And there must only be room for one project of any kind — that success will mean my failure. So, most of that was hyperbole but in the direction of my feelings. I live in fear of the scarcity of grace, I can’t yet trust abundance. My friend, Steve, post a quote on Facebook:

“Man, my friends,is frail and foolish. We have all of us been told that grace is to be found in the universe. But in our human foolishness and short-sightedness we imagine divine grace to be finite. For this reason we tremble. We tremble before making our choice in life, and after having made it again tremble in fear of having chosen wrong. But the moment comes when our eyes are opened, and we see and realize that grace is infinite. Grace, my friends, demands nothing from us but that we shall await it with confidence and acknowledge it in gratitude. Grace, brothers, makes no conditions and singles out none of us in particular; grace takes us all to its bosom and proclaims general amnesty. See! that which we have chosen is given us, and that which we have refused is, also and at the same time, granted us. Ay, that which we have rejected is poured upon us abundantly. For mercy and truth have met together, and righteousness and bliss have kissed one another!” ― Isak Dinesen, Babette’s Feast

So, I will rearrange Friday’s schedule a bit, send an email to the organizers, and join the focus group workshop. When I went through Andy Paulsen’s workshop, Pockets in the Rocks, last year, I was both enthusiastic and jealous as all get out. I wanted to be leading it! My walk away added to my ideas and I learned from his leadership style. In truth, it probably doesn’t interest him to run workshop after workshop. He seems to be a big picture person. I saw plenty of room for both of us.

Why after demonstration after demonstration do I need more affirmation? I sense that deep down I want to the “fame” of being an innovator, but deep down I also just want to do the work. How much is stale and ineffective ego? Part of me can celebrate.

Posted on 19 February 201426 April 2016 by Suzanne Buchko 0

Cheshire and Linde were due to come for the weekend Thursday evening but because of a big snow storm headed for NYC, Cheshire changed her flight to Wednesday. What a gift! This visit is my birthday gift from these young women and nothing could be better. It is wonderful to have their spirits in the house.

Julia’s first cello concert was last week. It was a class performance and only for other classes — not even the entire school — and parents who could make it during the day. They played about eight tunes — some a line long. I still think that the strings program strives to quantity over quality, but it was great to see about 30 kids playing together. Julia did a very good job. Her aide sat beside her but Victoria did not need to do much queing at all. Julia payed attention to the music and the teacher as she conducted. Divided attention! Something that her therapists and I longed for for a very long time. Her playing was not perfect but when she got behind I could see her skip a few notes to catch up. She did not rush ahead and she did not play during any rest.

Yahoo! I do not think that she is at the bottom of her strings class. She is playing with peers! I am sure that we do a lot more work at home, plus her private lesson, than many of the other kids in her class, but I am so encouraged that she can keep up. And very encouraged that she is interested and enthusiastic about continuing.

The middle school search continues. Conflicting reports from different parents and educators reflecting their own experiences and some of what they’ve heard. Right now, I don’t see any school as being a perfect match and sorting through strengths and weaknesses has not produced a winner.

Patience.

Last week of the Fundamentals course at Mindfulschools.org. I will skip the next round of the curriculum course and pick that up later in the spring. I need time to digest what I’ve been practicing and also to spend time with the material that I’ve gotten from the woman who I will be doing my final LEND internship with. As that opportunity becomes more defined, I’ll write some of it. Right now, we’ve had two meetings a few months apart, the last one last week with a list of possible tasks for me and a pile of books to read and sort out.

More patience.

Posted on 15 February 201427 April 2016 by Suzanne Buchko 0

mole

It is cold. With windchill, it may be -40 tomorrow. I have a chicken mole recipe that is done in a crock pot and makes enough to freeze a meal or two after supper.

Lately, no, recently, no, today, I was thinking about whether I could live with another adult again. My cooking, choice of meals, is very dull. I mean this mole is not bad. I serve it to Julia with rice and fresh spinach. Tonight, with a little cauliflower and a few garbanzo beans. With rare exceptions, Julia eats what I serve to her. I do think about her dislikes when I cook but her range of foods is pretty broad. I try to avoid bread, starch and cheese. Julia eats without comment. If she does not disapprove, she just eats. And so, I don’t please her.

“Julia, do you like what you are eating?”

“Yes.”

“Then tell the cook.”

“Mommy, the food is ok.”

Cheshire and Linde are coming to visit in a few weeks and I was thinking about cooking for them. For a few moments, I was intimidated just imagining trying to please them. The reactions makes me feel like a bit of a hermit. I need an adult roommate.

School was called off for tomorrow around noon today. And today was only a few degrees better. We will do our weekend list of school related work. I had Julia start painting her bed this afternoon and wouldn’t you know that she does a good job putting on a first coat of paint. I was working on the headboard and was rather casual with my first coat. When she was done with what I had given her, she asked if she could “fix” mine. She used to ask the same thing when David or I tried to make play dough dinosaurs with her. I did not show her how to brush evenly, I did not tell her not to put paint on the end pieces. She just seemed to know. She is a visual learner but I never imagined that she looked at painted furniture and somehow learned or understood what it took to make the piece look like that.

Posted on 28 January 201427 April 2016 by Suzanne Buchko 0

Options

I am exhausted and when I am so tired, my tipping point between whelm and overwhelm is close. Tonight, I have the feeling that there in no way – some ice cubes chance — that I will do all that I want to. I need rest.

Julia and I went to Chicago today to her eye doctor and then to Ikea. Dr. Zelinsky changed her glasses — we’ll get new lens in the mail and find a shop to insert them into her frames. Dr. Z suggested a massive therapy day with four therapists, including herself, to provide a re-setting of Julia’s core functions. God! I understood it when she said it and now I cannot write a word about it. I need to call the office on Monday and have it reexplained to me.

A while ago, 2 years or more ago, Ellen told me that Julia’s spirit guides felt that she needed to be corrected in some basic way, re-setting to a ground point. I wonder if this is what they were talking about.

Dr. Z also suggested that after we did the four way therapy session, that we might do a therapy called Interactive Metronome. Our old OT, Annie, is listed as a practitioner. I trust Annie. I will talk to her.

Our post intensive therapy plan is not at all straight forward. Much like Julia herself. I question where to put our energy and time. Right now our week has three sessions of group social skills work, attachment/trauma therapy, speech therapy and cello lesson in it. With practice and home work, there is not enough time for fitting in the physical therapy that we began last summer. Julia gets precious little down time. I don’t see how we could fit in another thing, but then I wonder if we are spending this time appropriately. Now that finding the appropriate balance for Julia’s time is completely my responsibility, I cannot feel sure that I know what would help her the most. I loathe to waste time. I want it all to count.

Posted on 19 January 201427 April 2016 by Suzanne Buchko 0

Busy

Written 15 January 2014

Today, I was busy all day going from task to task with incredible efficiency. I am still smarting from yesterday’s discovery that Julia is once again scratching and picking on the sores on her arm. Last night after her shower, I rubbed her down with baby oil, gave her an extra antihystimean (She is taking one a day but can go up to three. So, I am going to try two although I still find it hard to believe that anything itches.) I put a bigger bandage on her wrist that included her palm, and this morning I gave her fingertip-less gloves to wear in school. The report from school today was that she left her sores alone.

Yesterday, Marilyn tried to get me to opion on what started this round. It started in school, but she quickly began doing it at home, so it is not just a school thing. It is this behavior more than any other that drives me insane. Marilyn also said some real zen-like thing, urging me to take this behavior as a practice.

All I can do is try again.

Julia will be 13 tomorrow. We are redecorating her room — she wants a Harry Potter room to replace her dinosaur room. I was a bit concerned about the all encompassing obsession but a part of me was pretty relieved. Julia is (1) not using her room, (2) has no intention of ever sleeping there again, and (3) it is not at all appropriate for a 13 year old thinking that she may eventually really have a friend to invite over. But I wasn’t going to change it on my own partly because I had no idea of what to do. But last week she came up with the Harry Potter theme and I jumped on it.

She helped me clear everything out of the room. I picked out some straw colored paint — trying to use the dark red and gold of Gryffindor. I wasn’t going to redo the wood work but I never touched up the upstairs wood work after the floors were done. I had trim paint in the basement so I repainted. This had the feeling of really slowing down the momentum. I started the day today taping the ceiling, baseboard and around windows and door and then gave half the room a first coat. I bought a decent paint but I think I will still need a second coat. This weekend we go to Chicago to see the eye doc. I’m using that trip to visit Ikea and bring home most of what I don’t have at home — rug, throw for chair, duvet and drapes. I plan to repaint her bed and the ceiling fan, set up a real wooden bookcase, push a white-gold reading chair into her room, and drag my old travel chest upstairs (I’ll get help with that one). We ordered a sorting hat and a Gryffindor pennant. I’ll find some rustic shelves for the hat and her wand, and something with hooks to hang her robe on. She wants some stick on images but I want to wait until we get the rest of the stuff in the room to see what kind of space we have. I am hoping for a pretty quick transformation.

I wasn’t going to buy other birthday presents but I caved today. I bought very little for Christmas because of our trip and her wand. I hate to do that again for her birthday. So, I stopped in Old Navy for a sweater, two shirts, and pj bottoms, and Barnes & Noble’s for a CD and books.

After I painted some this morning, I baked cupcakes for Julia’s class. I’ll ice those tonight. I suspect that this might be the last of the class cupcakes. I remember missing that with Cheshire. I’m sure if I’m really aching to make cupcakes I can find some harried parent with a birthday kid. While the cakes were in the over, I rushed outside to shovel away our dusting of snow. I am rather impressed with myself for getting all that done and not being late for picking Julia up.

Julia a teenager. Amazing and scary. She is like no teen I’ve known and perhaps that is as it should be.

Posted on 19 January 201427 April 2016 by Suzanne Buchko 0

“new” research findings

Power of Art: Can music help treat children with attention disorders? By Jane O’Brien

http://www.bbc.co.uk/news/magazine-21661689#!

“New research suggests playing a musical instrument improves the ability to focus attention.”

I know. I know. I know. Do the research, publish the findings, and make music lessons an evidence therapy. Sometimes I feel like we are in a very small box and we need to just kick our way out!

Posted on 5 January 201427 April 2016 by Suzanne Buchko 0

worry

From 2 January 2014, about an hour after our flight was pushed back.

Stranded in the Baltimore Airport. Hopefully for a few more hours, possibly for the night. It has been cold and snow in Wisconsin but tonight the weather is acting out all over the country. The flight that we are schedule to go on departed hours late from Houston because of a late arrival from the midwest. Now, there is the weather here to cause concern. It is snowing and sticking, and folks in Baltimore are cowed by snow.

We are prepared — comfortable, warm clothes, backpacks with a change of underwear just in case, and plenty of electronic toys to occupy us. I decided that I would pay for some internet here but I cannot seem to connect to anything including the free WiFi.

The plane landed about 2 hours late and we were on it soon afterwards. The weather in Maryland was terrible and the plane needed to be de-iced and the runway plowed. Everyone pushed on until it was off the ground and flying. Milwaukee was cold, but the roads were clear and dry. We made it home a bit after 2. Five hours later than planned but home nonetheless.

What I notice is that I worried less than I ever have about that kind of situation but even the worry that I did was useless. I could not give it up but at least I could notice what it was good for.

Worry is a tough one for me to give up. I do it all the time about Julia and it ruins everything! Just a bit of hyperbole.

I can get into a vortex of maternal preoccupation when I focus on all the Julia has not learned that is essential to an independent life and a typical 12 year old. oh, 13 in two weeks. I want to schedule every minute, fill it all with something important — reading, writing, science preview, cello practice, math on the computer, typing program, knitting, calendar work, before and after work. It is hard to find any time for fun and being that 12 year old on that kind of schedule. I have not found the balance. I am still on the intensive therapy schedule.

There are brief flashes when I see/hear/perceive Julia’s intelligence. A very rare glimpse of clarity — an answer to a question, an astute observation, an enthusiastic explanation. When we were at Universal Studios, the Wizarding World section, we went to the Olivander shop to get a wand for Julia. This is her description of what happened:

We went to Universal Studios and I got a wand.

I went to the Wazarding World of Harry Potter and to Ollivanders wand shop. A whole group of people went into the shop at the same time. Mr. Olivander came in and said “Welcome to Ollivanders Wand Shop. I’ve made fine wands since 382 B.C.” Then he asked me if I wanted to find a wand before I went to Hogwarts.

Mr. Olivander handed me a wand and said, “Perhaps try this first wand.” He told me to say luminous to make more light in the shop. I said “luminous” and I made lightening and thunder. People in the shop were scared. Mr. Olivander said that that was not the wand you should use.

Mr. Olivander gave me another wand and told me to bring the flowers from one corner of the shop to the counter. He told me to say, ___________. I said that and the flowers wilted. So, that was the wrong wand too.

Then, he told me to stand in the light by his counter he asked me when I was born. I told him, January. He said, “Ooo, wait a second. Perhaps you should try . . . .” He went up the stairs and found a good wand. It was made of Alder wood with a phoenix feather inside and he said it had a good “swish.” He handed it to me and my pigtails were blown up and lights came on.

He said that was the wand chose me and that he expected me to be a great and strong witch.

Two things startled me. First, that she was able to be involved in such an encounter — answering questions, responding to directions and all in front of a group of people. Second, that she was able to remember it and tell it back to be a few days later.

When we were in Maryland with Cheshire and friends, I watched as Julia interacted with them and I do not see much difference in her interaction from last year to this. I want to know how to inspire her to be as attentive to her sister as she was to Mr. Ollivandar.

At home in Madison, Julia is obsessing about Harry Potter. Harry and his life and friends are on her mind all the time. Sometimes I ask her to stop talking about it for a little while and talk about our lives and she asks me if she can still think about it. This obsession has a different feel to it. It is focused on people and not on dinosaurs, and the people have been part of books and movies. I wonder if it is a step in the right direction — interest in people, that is. I understand her interest on my own terms because I obsessed about books and stories for years but is it the same.

I have no idea! And guidance is sparse. No one seems to really know. When I ask experts they tell me of possibilities, most of which I’ve figured out for myself. Navigating the development of typical children is not easy but navigating Julia’s tween years is like padding upstream, in the dark, with a straw for a paddle.

Absolutely, all that I can do on my best days is to be present for her and have patience with the both of us.