Julia and cake

Half the year has been lived.  Not really wanting to measure progress and projects but all the same, I wonder if I am standing in the same place. Surely, I have moved either by my own energy or the winds of changing times. I can quickly recount gains and losses, some sad, some hopeful, some just as they are. Like the cracks in my porch ceiling that I watch without judgment.

Julia is on a meds vacation weekend for the first time in 6 or 7 years.  When she first started on stimulants for her ADHD, she almost stopped eating and quickly began losing weight, but her behavior in school made the meds indispensable. So, she was medicated on weekdays and crazy on weekends.  She was tough on therapists and in church school on the weekends and she also ate like a starving woman.  During the week, I filled her food with as many calories as possible and there was at least one bottle of Ensure, rebranded dinosaur milk, every day. After a few months, Julia’s eating and weight stabilized and although she has always been in a low percentile on the growth chart, her docs have been comfortable with her progress.  But since the beginning of the year, she’s lost 8 lbs. on a steady decline. I wanted to blame our summer healthy diet—fruits and vegetables, a little protein and dairy and very little starch—but she has been losing since January.

So, this weekend!  Yesterday, at 11 a.m., Julia began eating and has not stopped yet.  She had breakfast, brunch, a snack, lunch and an after nap snack so far today.  She is eating like a hobbit.  For one snack, she ate many strawberries and then made herself chocolate milk with whip cream.

There is relief in this eating frenzy.  Her meds doc suggested that perhaps there was another cause for her weight loss and we are seeing her primary care doc this coming week for blood tests and some etc., but this weekend suggests that some change to her meds are necessary but hopefully little else to worry about.

Last weekend, in Ashland I began writing about Julia since school ended and I’ve been adding to it most of the week.  I started as we waited to get ready for the memorial service in a most unlikely place—pool side as Julia splashes. We arrived in Ashland a few hours early and stopped into our hotel to see if we could use their public restroom to change. The sweet woman at the the desk of the AmericInn, found a room for us to check into early. The hotel had a small and very adequate indoor water facility.  Julia cavorted in the pool and went down the water slide and sat in the hot tub.

Water is a good place for Julia. There were bunches of kids—are we the only people who travel so singly? Every other travel group seemed to contain 3, 4 or 5 kids close enough in age to have fun together. Julia made multiple social bids, and then bobbed and swam and splashed other girls. Her social bidding works better in a pool than any other place.  Social demands are very flexible in the water.

This was our second real week of summer activity and things have shifted. So far, official summer school—2-hours twice a week at the high school—appears to be a waste of time.  I hope to be proved wrong. The up side of the experience is exposure to the high school building and having class with a friend.

Then, there was the social skills group—a themed board games group—she has been in for 2 weeks. It was not a good fit—5 or 6 boys and Julia. The therapist running it was also male and while I really like him (and I think Julia does as well) the male energy, loud and boisterous, unhinged her. The therapist said she was dis-regulated and unable to focus.  Not surprising.  Julia in very interested in boys in the abstract but their reality en mass is more than she can handle.  Luckily, there was another group meeting twice a week that lost one of its members.  Although it was not planned this way, this new group is all girls and Julia very comfortably slipped into it.  Some rearranging had to be done, but the schedule is again stable.

The curriculum that I wanted to do with Julia, based on her teacher’s recommendations, is in place.  Math (counting, telling time and decomposing number for addition), reading (ripping apart the first Spirit Animal book and reading about Alaska), cello practice and art.  Three of my respite providers are doing 3-4 shifts each week, taking some of the responsibility of teaching from me.  For this, I am most grateful and it really does make the plan possible.

Julia has also started working with a neuro-practioner, Donalee Markus, outside of Chicago. Donalee designs visual puzzles to strengthen the brain.  This is our latest dip into the non-research based therapy pool, at the recommendation of Julia’s eye doctor, Deborah Zelinsky. I believe in the neuro-plasticity that Donalee preaches; however, change comes slowly and with much, much work. So far the visual puzzles play to Julia’s strengths.  Some of them were very easy for her, which is rather lovely.  For a kid who struggles mightily with school and therapy and has been working hard at all of it, ‘homework’ that is easy is a gift. Julia does the packets like she plays video games.  If she keeps her willingness to do the work, perhaps this will bring more change. Perhaps, perhaps, it can give her another step forward.

A few weeks ago, I promised myself that we would ride our bikes every day.  We have not done it everyday.  Driving to Chicago and rain have been our chief obstacles.  We are doing it most days—about a 40 minute ride around our little bay, onto our isthmus bridge and down Lakeside Street to our house. Julia grows more steady and sure, she is crossing streets with more assurance and ease, and she still prefers to ride on sidewalks.  She has not bumped into anything since our second ride and although she still rides slowly, she is going up small hills.

Then there were two tough days last week. I found Julia looking for and finding some very inappropriate websites. It was cartoon porn staring Sonic the Hedgehog and his friends. I was furious. Julia had stumbled upon some softer inappropriate websites some months ago.  At that time, we talked about it, I felt she understood that I didn’t approve and why, and she promised she would not do it again. The stuff she was looking at this time was graphic and, in my mind, harmful. I lost it when I saw what she was looking at.  She knew she was doing wrong by looking at it. I am not proud of my own temper tantrum but is it wrong to hope she was scared enough not to do it again?

Sonic has been a favorite for awhile now but I felt the need to draw clear black and white lines.  So Sonic and friends are no longer welcomed in the house or on the computers.  I deleted a collection of pictures (none were concerning), put much stronger parental controls on the iPad, and blocked lots of sites.  I don’t think I would do all this for a 16 year old typical child but Julia is more vulnerable than other 16 year olds.  I may have gone overboard but maybe not.

Coming on the heels of Sonic’s demise, Julia broke her cello bow.  Her teacher believes that the bow -old and well used-was cracked and primed for the break but it was shocking to see the bow tapped and falling into pieces.  It took a few days to get something new and I am impressed with the care shown to the new bow.

For Christmas, Julia got a small boom box and although she enjoyed the idea of it, she was not using it much.  However, this summer she has combed our CD’s and is playing music almost non-stop.  Her taste is  . . . youthful.  Kind of awful pop.  And she sings it all very loudly whether or not she knows the words.  Or tune.  I do believe that this is payback for my teen years. Years when my parents endured show tunes 24/7.  Years when I listened to scores until I knew every word and every note.  Oy.

Really, I don’t mind.

She asked and I bought her headphones which she is not using for music at this point but carries around her neck whenever we go somewhere that will be noisy.  They are half noise protection and half fashion statement.

Finally, just one more thing.  Julia used to be terrified of thunder storms.  At the first rumble, Julia would freeze.  No work. could be done, no food eaten, no fun or sleep had. She still doesn’t like thunder storms but she is regularly sleeping through most storms.  She may close windows and the shades and curtains in her room, but her world doesn’t stop.  What a blessing! Today, between meals, Julia took a long nap.  Very unusual for her but another not a result of a meds vacation. She napped through a significant storm.

Small steps.  A slightly easier life.

Julia did most of her home work today.  Focus was a challenge. She is tired, yawning between words spoken.  She is eating.  Again. She is talking a mile a minute.  She is also singing.  And she asked if I could make her a milkshake for dessert.

We’ve made it through this weekend!

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