foibles

How to explain utter stupidity.

Julia and I were at the swim club almost ready to leave for her clinic time. She got in the back seat. I was about to get into the front seat when Julia asked for her glasses. She broke her glasses for the third time last Thursday a week after she got them.  We were still using the costume frames which had gotten her through the winter and spring. But in June she broke the side piece off the original pair of frames when she was trying to bend it. Can’t bend such cheap metal. I found a similar pair online ordered it and changed out the lens but in another two weeks she broke it again.  I took partial blame for that break because Julia lens are prisms, the glasses not corrective but therapeutic.  The prism have a specific orientation which I forgot about when I asked a local eye glass store to put the lens in the new frame. Perhaps she fooled with the side piece until it broke because the lens were uncomfortable.

I bought a third frame and this time sent it to Milwaukee where the lens were made. The glasses were back in a week with the lens properly installed. And then Julia fooled with the side pieces again and again broke the frames.  I had already made the decision to get her sturdy, conventional frames when we see the eye doc next week and was only hoping to use the third pair until we got the new glasses. Breaking the third pair meant was due not to uncomfortable glasses but an obsession of bending the side pieces over and over again when Julia took them off getting ready for bed. She admitted that she liked the bending. Autism can blind side me at a moment’s notice.

I taped the side arm onto the front of the frame and made Julia wear those glasses. She had a very hard time keeping them on but there you have natural consequences. We went to a glasses place in town because although her eye doc is in Chicago I was determined that the glasses would be made and fitted in Madison. We had gone to a store at Hilldale a few weeks ago and began looking at frames at which point Julia refused to look at anything else but round harry potter type frames. We found a few that were plastic, round and very expensive but I was willing to consider them if she would wear them. Last Saturday,we revisited the store to pick out frames so that they could be ordered and ready when we had Julia’s prescription.  This time she didn’t want round plastic frames even though I had told her that with the breaking of the third frame, I was going for sturdy and something that would not tempt her to play with the arms.  I wanted to get as far from the HP glasses as possible. She wanted wire frames. I was almost ready to leave the store and revisit another day when she put on a pair of purple metal frames and declared that she liked them.  The frames are not round or in any way resemble HP glasses.  They are sturdy.

While we were at the store I asked if there was anyway that they could improve on the awful taping job I did on the broken frames.  Because these are therapeutic glasses I didn’t want her to miss the time wearing them. Natural consequences be damned!  A very sweet woman took on the challenge.  Using thin plastic tubing she put some on the arm and some of what was left of the connecting hinge. Then she heated both ends and put them together.  Then she retaped, doing a much better job than I did and heated it all again.   The results are somewhat sturdier than what I managed to do and Julia says they are more comfortable. In an effort to have glasses time from now until her new pair arrives, she does not wear them when she is alone. So the glasses stay with me when she goes up to bed and when I am taking my water aerobics class.

And so . . .  yesterday as we were getting into the car after swimming, Julia asked to put on her glasses. The glasses were on my dash board and I was half into the car.  I threw my swim bag into the passenger seat, carefully placed my laptop on top of the car and reached for the glasses and put them on her.   What happened next is sort of a blur.  You know, all those things you do automatically, like retrieving the laptop from the car hood and carefully placing it on the passenger seat in my car.  I guess I didn’t do that. Of course, I almost never leave anything on the roof of my car so I had very little practice automatically retrieving. And oh, the operating words are ‘almost never.’

When we arrived at IDS clinic, no laptop was beside me.  I retraced my steps expecting to find my crumpled electronic companion crushed and broken in the swim club parking lot but when I got there it wasn’t there.  It was not on the grass or under another car, no one had turned it into the front desk and it wasn’t anywhere on the surrounding streets. The next day no one had turned it into the police.  Just gone. Which is kinda spooky.  The Shorewood Swim Club is the kind of place where spare change and single socks are turned in.

I needed to moan.  I remembered that this was the laptop that was new during David’s transplant and I learned and set it up during the days of hospital sitting.  I could recite other nostalgic remembering but after some groaning to Cheshire it was over.  I have a backup that is two weeks old, my purse will suffer (I had been congratulating myself for very low expenses this summer.  So much for silly pride ), I had a plan to use that laptop as an at home machine and buy as iPad for traveling soon.  I have had that plan for a few months and been thinking “soon” for awhile now.  But it will be exciting having a ‘latest’ model with the new bells and whistles.   And as for uncanny luck, last weekend when I was having trouble with the tracking pad, I managed to print out all of my passwords. Here are a few sheets that I’ve made great use of in the last 24 hours.

The biggest fall out apart from the prospect of blowing the economical summer is this soup that I had started on Tuesday morning.  It is an African chicken and peanut soup with a tomato and coconut base.  Julia loves it.  The most important part to gettin’ it right is to put in the correct spices in the correct amounts.  There were only two steps left to do when I left the house on Tuesday morning.  One being spicing the soup.  Unfortunately, the recipe was on my computer, and a thorough search later in the day proved fruitless.  And so, a mostly made pot of soup sits in the frig awaiting the dumping of the backup into the new machine.

Update:  I used Julia’s iPad for two days as my sole computer and it wasn’t bad.  I was not ready to give up the roominess of a laptop to store all my odds and ends, but I was happier than I thought I was going to be.  An iPad and a keyboard would be great to travel with.

I bought a new laptop — the newest MacBook Pro with Retina.  The model has been very recently updates.  It is much like my old model but tweaked to be quicker and slimmer (umm, I’d like to be tweaked to be quicker and slimmer.).  I haven’t restored my backups, so I am without music and pictures and documents.  But, at least I am back to pecking away at the keys.

I have been too preoccupied to find time and energy to write.  I didn’t expect this would be a re-entry post but it is.  Such foibles.   Such foolishness.

question of balance

The summer is slipping by. I begin entries and never finish. When I get back to them, they no longer seem interesting or relevant. So this is mostly a catch-up in an attempt to begin again.

The summer’s curriculum seems to be producing progress — borrowing and carrying over seem to be imbedded, counting money up to $2.00 is coming along and she is getting better at our formulaic word problems. Julia continues to graze as she reads. She picks up books that she knows or doesn’t know and thumbs through and reads a page or two. We do read in the more traditional way together, but if she read from beginning to end by herself . . . I don’t know whether to just allow grazing when we are not reading together and hope that she comes round to wanting to know whole stories or to somehow make her change. I have no idea of how so the point might be moot.

Drawing is exploding mostly due to private art lessons with Julia’s Randall art teacher. Kati is amazing. She knows art and what kids do and she knows Julia. It is clear that Julia is ready to learn about her art — how to draw, make prints, layer on color — and I cannot do it. I am so grateful that Kati is in our lives and I hope that we keep collecting wonderful people who can push Julia on.

An example: a few weeks ago, Katie had Julia draw various views of her cello — front, back, side, 3/4 view. They worked on the exercise for two week. The first week, Julia did nothing when Kati wasn’t there, but after the second week, bits of the lesson began appearing in Julia’s day to day drawing. She drew a picture of herself during therapy with Marilyn. Julia has not worked on faces and so is usually not pleased with her work. Her faces are usually full on and make no attempt to capture someone. The picture she worked on that day had her in 3/4 view with her glasses on. She did not quite get the nose and mouth but she had her eyes and glasses right on.

And Julia’s glasses. Oy! She broke the first pair’s side pieces. Not surprising. These are costume glasses and she has worn them everyday since November. We are scheduled for a check up and probably new lens in the fall so I didn’t want to find new frames and have new lens made. I found another costume pair and had the lens fitted in. Those were broken in less than two weeks. When I went to buy a third frame, I realized that her lens, being prisms, have a particular orientation in the frame and she may have found the second pair totally uncomfortable because they were not set correctly. The third pair is in Milwaukee being set by the person who made them to begin with. My take away from this is (1) to move to real frames, probably plastic which can take some wear and tear and (2) to find someone in town to make them up.

We both continue to improve in our knitting. Julia is making a blanket for Lizzy, the dinosaur, and I am making fingerless gloves. Both incredibly easy and straight forward. I am both looking forward to and delaying moving on to more challenging projects.

I attended my first Buddhist retreat. Non-residential and silent, three days of sitting, walking and listening to Sharon Saltzberg. I signed up without really knowing what it was like and was apprehensive the first day. The silence made it easy to begin. No need for small talk or the nervous energy of politeness. I did not realize that the teaching would be about meditation technique — no philosophy for its own sake – which was wonderful! I’ve needed exactly that for a bit less than a year now. Sharon’s emphasis is loving kindness meditation although she’s spent some time talking about mindfulness. It is like being corrected while doing barre work in a ballet class and the days passed quickly.

Once again, Julia did well in swimming lessons at the Shorewood Pool. She learned the butterfly kick and watching her cut through the water reminds me of how much I want to develop a sport for her. We’ve tried horseback riding — too many cancelations due to weather to hold her interest and to keep her progressing — and softball with the challenger league — a bit too much support for her but she is not ready for regular softball. She is a natural at swimming but to really progress, to learn all her strokes, she needs lessons year round. She also needs the lessons to be private. A half hour of working one on one with a teacher is equal to a week of group lessons. I am not sure we can even fit that into our school year calendar and not sure if I can afford it.

It is a question of balance. Where to spend the little bit of time we have? Is it in a real therapeutic setting like IDS where social skills are worked on one step at a time. Or is it in training skills so that a day will come when those skills can be implemented in real life social settings. This fall we will have 2-3 sessions at IDS, attachment therapy and speech therapy. To that I’ve added cello lessons. Now I am thinking of swimming. This does not account for any after school activity that she might like to do — I’ve heard that clubs are a big thing in middle school and she announced today that she would like to be in plays at school. She really enjoyed her experience in the summer music camp.

And there is never a way to ease into anything. I’ve already made speech appointments for most September and IDS has pinned us down to fall semester days. Up to last year, school did not come with much homework and her IDS therapists could always be relied on to do some of it during their sessions. As we’ve changed therapists at IDS due to graduation and attrition, I cannot rely on the newer therapist to do any of the “school” work that Julia comes with. If that continues, we need to set aside more time at home.

The stress of trying to second guess what will work best is an incredible waste of energy. Yet it is not possible to just let things happen. And for heaven’s sake, the kid needs some down time at home to just fool around.

Umm, fooling around. Julia has discovered the Rainbow Loom (http://www.rainbowloom.com) and is now sporting about 10 elastic bracelets on her arms. I have one that she made for me. She is making gifts for her China sisters and wants to learn to make more complicated bracelets. It makes me smile because when her peers were doing things like this, perhaps this very thing, a few years ago, I did not imagine that Julia would ever do it. I thought it was another experience that she would miss. And I think she is still in the general age range for this craft.

On another note, it was interesting to find out how awful I was at following the directions for this craft. I read the printed instructions and watched youtube videos. And was pissed off the whole time. I think I felt exactly that way about learning to knit and crochet when I was a kid. Leading me to believe that I may be creative and artsy but not craftsy. Another kid looked at what Julia was doing wrong (probably do to my instructions) and fixed it. Since the fix, Julia has been successful making her bracelets.

I’ve had my first brush with Child Protection. It was reported during music camp that I hit Julia. A social worker interviewed Julia and came to the house. The experience was filled with stress but ultimately ok. So far, at least. It is also not surprising. For years, Julia has come home from school and told me that a teacher punched or kicked or pushed her. These are not lies exactly, mostly misperceptions. We talked frankly about the consequences of her tellings. She does not fully understand what is appropriate to talk about and when and to whom. Her filters are faulty or not in place. Being taken out of class and talked to by a social worker intent upon drawing information out of her scared/jarred Julia some. For me, it was humiliating — not grossly — I knew it would happen one day. Julia has a way of always addressing any excessive pride and taking me down a peg or two. The build up to the home visit was much more stressful than the visit itself.

There is a certain amount of feeling satisfied with this summer. Tasks, errands, lessons, cooking, gardening, swimming, finally reading (a very junky book). Not much towards any goals apart from borrowing and carrying over. Writing has been manic at times, journal-like self-indulgence (Yes, even more self-indulgent than what I put here.) and then fallow. I know that pace of days will change again when middle school begins for Julia. I aim not to push, to wait for what is coming and at the same time to prepare for it. I feel close to something although close might be in September or two years away.

And finally, we both got hair cuts. A trim for me and nothing special but Julia has bangs! She was not in favor at first but she looks adorable and she knows it. She can brush it in the morning and doesn’t need clips or bands to hold it back. She can even swim and come out of water with hair in her face. I’ve dithered about bangs for her for an entire year. Bangs are a commitment. Bangs take forever to grow out. Bangs might make her look too young. However, on balance, it was a great decision.

music camp

Yesterday was our busiest day of summer. Julia’s schedule was: dentist, cello lesson, swimming lesson, strings camp, IDS clinic. Swim lesson and strings camp were new. I was anxious. Julia was fine at swim lesson. She seemed to be listening and doing as told. There were three kids in her class which is perfect for her to handle the class without additional help.

At least I hope so. The instructor looked a bit anxious when I let him know that Julia is on the spectrum but he took the initiative and did not let her drift.

Kati asked about what happened with strings experience, aka music camp.  The beginning of the story is here (https://myyearofchasingjoy.wordpress.com/2014/05/13/music-camp/).  An update is here (https://myyearofchasingjoy.wordpress.com/2014/05/20/alls-well/). [I haven’t figured out how to use the link button.]

The further update is that at the graduation party, Victoria, who went to strings class all year with Julia as well as the district strings concert at West High, told me that she was going to be Julia’s aide during strings camp. (All but the first day) I didn’t think this would happen. I suggested Victoria to my district contact but I didn’t push for her, mainly because the district does not seem to like to support their special ed students for summer enrichment classes. I am aware that just getting Julia into the class/camp/experience could be a small loss of face for those who told me it couldn’t be done. I wanted Julia’s entry into this experience to be smooth because I intend to make use of enrichment classes for other summers.

But I am overjoyed that Julia will be with Victoria who she has known for four years, who did strings class with her and who taught her to knit this year. Victoria was still on vacation on Monday, so Julia’s reading teacher for the past two years stepped in for the day. From what I heard, there were a few bumps — Julia talked at times when the teacher was talking and some of the music was challenging — but none of this sounded out of the ordinary. Considering that Julia has been studying for less than a year and many of the kids at the camp are more experienced, she is right on track.

I could not be more grateful for these extraordinary women who work so hard during the school year and are willing to give up part of their summer to be with Julia and help her through this new experience.

And just to say this very clearly: There is no summer school exception to the IDEA. If a special ed student needs to do summer academic work or enrichment classes and those resources are run by the school district, a student’s needs must be accommodated under federal law. This does not mean that a student’s entire IEP will be implemented — so, no speech therapy or PT or OT, but a student must be accommodated in the class they are in. In Julia’s case, this means that she needs an aide to be with her during strings camp. She does not need a special curriculum or any other accommodation and I don’t know whether they could refuse a student with those needs. I want to encourage other families with special ed students to use the resources that their school districts have. I admit to feeling the legal passions rise — issues like this could put me back in an advocate’s role.

We are still in bed this morning. Julia beginning to awaken. She was rightfully exhausted last night. Today’s swim lesson and music camp looks like a piece of cake by comparison. I was pretty exhausted too — added to the taxi chores and a bit of anxiety about Julia’s new experiences, I spent my free time yesterday finding a eye glasses service who would put Julia’s therapy lens into new frames. A few days ago, she broke her “first” frames. Because they are costume frames — Harry Potter glasses — it was a challenge finding a replacement. Five dollar frames don’t come with a lot of markings. I was successful in finding some of the same size to accommodate lens but of course, the lens had to be popped out of the old and into the new frames. Two places refused to do it. I was trying to avoid sending the frames to Milwaukee where it is usually done. The third accepted the challenge, warned me that the lens could chip or break and did it. It worked, the glasses fit and we are back in business.

I ended the day with somewhat of a hangover. Anxiety over new adventures? Anxiety over the glasses? Exhausted from my choice of joy this weekend? Coming down from a very social weekend? Feeling another death anniversary pass? Whatever the reason, I felt the dip in spirits. I was tired enough to wet my feet in deeper water of despair and depression and felt drawn to embrace the sad waters, but . . . but recognized where I could go and knew that if I just got to bed and closed my eyes, I would recover some equilibrium. I don’t mean that I was running away from sadness or anxiety. The weekend, the anniversary, the new experiences, the busy day’s schedule, anxiety over Julia’s ability to meet the challenges, even fixing the glasses were real causes for what I felt, but I did not need to globalize it and imagine that days would always be overfilled or Julia’s days would always be challenging or that she would be breaking her glasses again very soon or that I needed to be thrown into the aftermath of great loss again soon. Silly, I know, in part, where where my mind can turn to especially when I am tired.

So, I went to bed. Early. Thunder storms at midnight brought Julia into my bed and we needed a long guided meditation to get us back to sleep. I had a weird dream which I may describe if I can remember enough of it that stirred up feelings of abandonment and loss but this morning, in the cool, sunny morning, what upset my spirit only informs me.