present moment

355B6050-7478-471F-8B9B-EEC9ED3632C2This is a picture of Julia walking to class.  Her case manager sent it to me yesterdy.  He wrote:  “Hey, I was following Julia and a peer in the hall, talking like best buds.  Not sure who her friend is, but I’m happy she has made strong connections with reg ed peers.”

It is a great picture.

When I looked at it, my first impulse, after a good hearted motherly smile, is to race to the story of Julia making a friend, going over someone’s house, talking too long on the phone, telling secrets to someone (not me), going to a sleepover, having a party.  And then, I stop.   Continue reading

looking for . . .

Casting the widest net I can.  I’m looking for a way for Julia to organize and remember.  These are two big challenges that she has.  I know she is not an unusual teenager in this regard but without these skills life is pretty stressful for her.  For us.

The usual assignment notebook is not enough.  Neither is simply supplying her binders, pocket folders and accordion folders (Her favorite right now).  She needs a system.  And she needs it to appeal to her visual learning style.

I envision an app to use with her cell phone and iPad to replace her assignment notebook.  Something that would be easy to add to or link other web pages, etc. to.

And then a physical system to use with notebooks or binders or folders.

If anyone has any idea or system or can recommend something to read to help me in this, PLEASE let me know.

reclaiming passover

73294681-8865-471C-BD31-9183956D91C9It seems like a long time ago now that we, make that I, reclaimed Christmas.  I don’t expect that the winter holidays will always be perfectly smooth but our last Christmas and then New Years cruise seemed to reset my holiday clock better than anything else.  Distinct differences and concrete plans worked miracles.  Prior to last year, I was not only missing our pre-death holiday ‘routine’ but also missing the friends with whom we shared many thanksgivings and a few Christmases—people and plans I thought would never change.  Then there was change.  Ah, embracing those Noble Truths.

Last Friday, another holiday clock ‘got’ reset— Passover.  David and I enjoyed hosting seders since before we were living together.  How many years ago was that? (Only Jan knows.)  Our seders evolved and sometimes disappeared while we were in school or traveling.  When we lived on Washington Boulevard in Indy, we had room for big parties and we indulged.  I don’t remember when David started writing our Haggadahs or when we began expecting Cheshire to play or write something for the celebration.  We cooked, many times for days.  I think it was the only time I’d take a day off work to get ready. Continue reading

walk out & choir concert

AB3B3B29-E24E-4D55-A30A-A54CD25329EAYesterday, on the month anniversary of the massacre by a 19-year old using a semi-automatic style weapon at Marjory Stoneman Douglas High School, which left 17 dead and 14 injured, students all over the United States walked out of class to protest gun violence and to demand action by their lawmakers.  These clear, young eyes see the NRA’s emasculation of the GOP, the party which controls all three branches of our federal government and 33 state houses across the USA.  They see that the best the GOP president can do is host a roundtable discussion about violent video games after the NRA made him walk back his gun control comments. I’ve heard and read “grown-ups” criticizing students for meddling in issues they do not understand and insinuating that the protesters only wanted to get out of classes, but possibly those “grown-ups” know a very different kind of student than I know.  I applaud the students who organized demonstrations of all sorts yesterday and who intend to demand more from the rest of us to end gun violence with gun control. Continue reading

cheer & finals & loss

Saturday: My second basketball game in as many days.  No, I haven’t gone over to the dark side (excuse me, my basketball-loving Hoosier friends).  Julia is cheering.  Not perfectly by any means although pompoms hide many a sin, cheerleaders stand to one side of the basket and cheer from the side, and most folks are here for the basketball players. She is very happy.  Tonight she doesn’t even have ear plugs in. The gym’s echo is quite pronounced and the buzzer is incredibly loud and annoying.  No complaints from the girl.

I realize that it is me that wants and expects perfection before performance.  Julia and her cheer coach do not.  Julia is out in front of the crowd on her own terms.  Sometimes she perseverates on how she holds her pompoms and she does not stand as still as the other girls. And people do notice.  As we left on Saturday, various people told Julia that she did a great job.  Some of the compliments were accompanied by a knowing look to me.  She is being congratulated for her chutzpah, her sheer and absolute nerve to insist on being herself even in a line up of girls all the rest doing the exact same thing.  If there is pity, I refuse to see it.  This is a hard lesson for me—a lesson in letting her go and letting her be herself.  I would prefer that she show her independence by cutting up her food and sleeping in her own bed every night. I would prefer to let go of reminding her to go to the bathroom and listen and respond to people talking to her.  Instead, she insists on my letting her go in front of crowds with pompoms. Continue reading

of the new year

I’ve spent the entire morning and part of the afternoon taking care of business—overdue thank you notes to friends and the cheer coach (I had to tell her about Julia’s wall climbing which the biweekly cheer workouts are responsible for (Eek! Ending with a preposition!)), emails to find providers for our current respite needs and to teachers to figure out how to best support Julia as she works on her first English research paper, queries about two new projects I’ve been promising myself for a long time and also about an idea to help Julia with independence, paying a few bills, ordering what I think is the perfect birthday present for Julia, and phone calls to change doc appointments and set up another round of house repairs.

Whoa, I am clear today! And very grateful for the clarity. I have been kinda’, sorta’ muddled and overwhelmed recently.  No good reason.  Holidays? Travel? The cold (not a cold but the weather)?  Since we’ve gotten home, I’ve had a slow ‘recovery,’ not from illness but from malaise, some not-quite sadness.  My usual trust that I would get back to a busy daily round eventually was beginning to wane.  Perhaps the muddle was here to stay this time. Continue reading

thanksgiving gratitude

img_2359There is snow on the roof this morning.  Just the smallest of sprinklings which will disappear in the morning rain.  It is almost 8 a.m. and Julia is still asleep.  She loves the first snow and I puzzle whether to wake her.  But she so infrequently sleeps this long and we were out late last night.  I let her sleep.

Such a week this has been!

Julia has made it to school on time for the last 7 days.  On time! On one hand, such an mundane victory, but I feel like a Plantagenet claiming victory during the Hundred Years’ War.  There is back story of course.  While researching the reason that Julia was not getting picked up on time even according to Badger Bus’ schedule at 7:56, it was discovered that the student picked up before Julia hadn’t been to school since early September and that the driver was waiting for someone who is no longer going to school.  So, without that stop and without waiting for the phantom student, Julia is now picked up at 7:48.  My perfect world had her picked up at 7:45; I can concede those 3 minutes.  She is now dropped off at a different door and she does not have to wait for an SEA to escort her into the building.  She can run into the building, get to her locker and get to biology on time.  And she can do it without help although special ed is not willing to let her speed through the halls alone yet.  I expect she will be doing it alone soon. Continue reading

busting out of room 1112

After 6 hours of cheer practice.
Sitting in the very crowded West library during last period.  I have less than an hour before I need to get Julia when school is over.  Going home will give me about 20 minutes there and I’ve brought what I need to meet her. I’m picking her up today because she gets out at 2:40 and must be back for cheer practice at 4.

I haven’t published for a bit more than a month, I’ve started a few posts and abandoned them. Each had high emotions and descriptions of broken systems.  The landscape and emotions shift too quickly for me to either continue or revise.  It seems like a new story every few days. The promising meeting or email results in a step back instead of two steps forward as planned.

Some highlights of the past month from where I sit today, starting with the positive because I have not been keeping the positive in my head recently: Continue reading

“special” ed

Julia was supposed to go to the lunch time choir group yesterday, Monday. This year West High School lengthened their day by 20 minutes and many of the usual after-school groups meet during a lengthened lunch.  (As a new high school family, I don’t know how lunch time clubs and after-school clubs were run in the past.)

Three weeks ago, Julia wanted to go to the lunch time choir and we were told that there was not sufficient special ed staff.  The SEAs (“Special Education Assistant”) eat lunch during the students’ lunch, half at a time, leaving the non-eating half to help the students. There are a significant number of students who need help during lunch.  I got in touch with the choir director and her case manager and all agreed that an SEA could accompany Julia to lunch choir but not stay with her.  I thought this was a good compromise.  I think Julia could do the activity with only support from the teacher/moderator and club members, but she did need help getting to the choir room.

Last week, Julia didn’t get to the club because she needed to buy her lunch.  I suspect that other students who go to clubs also buy their lunches.  No matter, she needed lunch and by the time she got it, no SEA could be spared to walk her to the choir room for club.

Yesterday, Julia brought her lunch so she could be walked right after her class to the choir.  However, her case manager and two SEA were absent for the day and there were no special ed subs.  Julia was told to stay in Room 1112 (a special ed classroom) for lunch without much explanation.  From what I can gather, the lack of subs is business is usual in the special ed department.

Aside: During parent’s night at the high school when parents follow their students’ schedule for an evening, I was in the special ed classroom three times.  Each time, I was the only parent present.

Pondering: What can I do?

julia

IMG_1051
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. Continue reading