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 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 →