Friday, November 30, 2018

6 month recap: Summer to now, school edition

To put it mildly, Elena has been struggling; with/because of her, the family has been struggling too.

The summer recap, in a few sentences: swim team was good, Elena and Vivian (!) both participated. Elena got a legal breaststroke this year! Vivian went to some fun camps, and Elena went to sleep-away camp at a small community college. (We sent her because she did not want to make progress on being self-sufficient; this came to a disastrous head during a chorus field trip to Toronto April 2017.)  She ended up having a great time--we figured she would, but it was a rough transition. We went to the beach (you can see some cute pictures in the Instagram feed in the sidebar). We went to NYC, and had a lot of fun. We had a lot of Vivian stuff going on--she has had 5 EEGs this year and tons of appointments. She has some "jerks"--not seizures, according to EEG, but situations were she is not conscious and sometimes hurts herself, only when she is *just* asleep or *just* awake. Jerks including falling off beds, resulting in hitting herself, or hitting her head (again--caught on EEG and NOT seizures). I was in protection mode when she was asleep, so I wasn't getting much rest. We bought a SAMi camera for night monitoring (it is a motion activated monitor that you can customize to record video footage because of sound or movement). Best Purchase Ever. She is doing well right now; for whatever reason, the "jerks" have stopped, and we are weaning her off one medicine while preparing to increase her Oxtellar medicine (because she's grown some).

School started--Vivian in 4th grade, Elena in 8th. Vivian still struggles with staying awake some days, but in general she is doing well. Elena had a rough start to 8th grade, to put it mildly.

Elena does not have an aide this year. This is a huge change, and she's very happy about it. I was adamant about the weight of her backpack this year, since she won't have anyone to help carry. That took some convincing (no aide, no extra weight, end of discussion) but it's going well. I am happy that E can handle herself on her own now--she is still very small, but can advocate for herself (needs to leave early/late to avoid a packed hallway, change for gym class, etc.). What I didn't realize, but suspected, were other things the aide did in terms of Elena's supposed-to-be-personal responsibilities. As in, keeping track of Elena's assignments, making sure her homework was organized and turned in, planning assignments for the week, reminding her to clean up, finding her a place to sit (be included) at lunch/assemblies/etc., reporting to me her feelings regarding school work, inclusion, relationships with peers and teachers. I get nearly no feedback from Elena or her teachers regarding her school day--maybe that's normal, but this year it is an abrupt change. She seemed happy without the constant presence of an adult, but has zero experience with being an independently responsible middle-schooler, and it shows.

Another issue was her math class. Elena took a "bridge" course over the summer to see if she was ready for Algebra; her 7th grade teacher (who we love) acknowledged that she thought Elena would have difficulty but she was capable. The bridge teacher thought the same and E was placed in Algebra this year. Because of scheduling restraints with her other advanced classes, Algebra was her last class of the day. I knew this would be a problem, b/c E frequently needs extra time to finish tests and quizzes (per her IEP) and she is worn out, mentally and physically, by the end of the day. Her education team insisted we try the schedule and see if we could make it work.

Elena tanked Algebra. It didn't help that her teacher was new to the school, new to teaching the subject, frequently unavailable for discussion with me, and very rigid regarding how she wanted information on a page and how she wanted tests and quizzes completed--regardless of what was in Elena's IEP. Elena would tell me horrible things that would happen every day, b/c she couldn't finish, or couldn't see the board (even though she asked to move her seat), or the teacher wrote fast and erased everything, etc. I decided to take all these stories with a grain of salt, just in case Elena took liberties with what happened on a given day.

Elena was failing. Her anxiety related to math completely consumed her; she literally spent all her free time doing math, made it very difficult for us to help her, spent so much time melting down over homework--there was no time for anything else, nor a refuge for the rest of us. I tried going through her case manager, but nothing really changed; I tried talking to the teacher, which went nowhere. The school psychologist didn't answer my emails. We found a tutor, who was wonderful, but Elena couldn't keep up with the pace, her math grades stayed low, while her other subjects dropped. She was begging to get out of the course. I went to the principal to find options, and he gave one; switch Algebra teachers, and lose the rest of he classes she loves (go to standard other classes instead of honors classes, and with all different teachers). I was angry and disappointed and unsatisfied with this one choice.

Elena agreed to ANY change, as long as it would get her out of her current situation. She was MISERABLE. She hated school, kept calling herself stupid, sobbed every day at pickup. I kept trying to get appointments with people who might be able to help us, but could never get a meeting to make actual change. I have NEVER had an issue like this with Elena and school, EVER--it was a new, horrible experience for me in the public school system. I finally got a meeting with the principal and demanded that she get out of the class, for her psychological well-being; I requested a lower math class, which was something no one else considered. She ended up changing her long standing F to a C with a major project, and then we switched her to the 8th grade pre-Algebra class.

I have never seen her so happy this year.

Her confidence is up. She is able to spend more time on her other subjects, and those grades have recovered. Sure, I think she needs more of a math challenge right now; we are keeping her tutor, who will "slow-roll" algebra concepts so they will be familiar to her next year, while addressing other issues she has (transcription errors, word problems, organizing work, and fractions). She is working on organizing her schoolwork daily, weekly, on her own; before she was essentially paralyzed by Algebra anxiety/workload. She has time to play, exercise, and stretch, which she didn't before.

It was absolutely the right choice--and one that Elena helped make a reality. I had her make the final decision, so she could own it. We finally had some literal and figurative breathing room.


Anonymous said...

Hi Amy,
I have spastic diplegia Cerebral Palsy like Elena and understand her math anxiety all too well. My math was so bad and my experience with my IEP and the entire school system was so bad I had to switch to home schooling for any type of relief. Once I homeschooled all of my scheduling and math stress went away because I had ample time to learn at my own speed with math and I finally was able to learn how to be independent academically. Like Elena's, my aids DID EVERYTHING so I couldn't even write a math assignment properly or write in basic MLA essay format. My family taught me these academic independence skills from scratch and it literally saved my college GPA years later. I was around 9th grade when I started homeschool and transited to college at age 18 in a community college after earning a GED. I had an honors level GPA when I graduated college.I'm so glad Elena went to a camp at a community college since I highly recommend community college to any disabled student now because its cheaper, there's a sense of students and professors looking out for each other, and the workload is lighter. Here is a film I like about a person with spastic diplegia in community college

Community Colleges tend to have good accessibility services where most importantly THE STUDENT has control so they would never end up in a pickle like you did with Elena's principal. Community colleges also have workshops on managing stress and planning school work in accessible formats. Once I entered college some of my testing anxiety came back with a vengeance(I also broke down crying, feeling like I let down professors I liked) so I had to do some remedial math but by doing the remedial my math brain finally kicked in and I fell in love with statistics and geometry. So please let Elena know I struggled the exact same way and she will do fine! I feel her pain! I'm assuming homeschooling is not an option for you but I still recommend it if these problems get worse.

In case you didn't know when I was in college my academic advisor made me aware of a study saying that people with Spastic Diplegia tend to have severe math difficulties as part of the condition-something about the parts of the motor area of the brain effected by CP effecting our sense of space, distance.direction, number values etc. This blogspot blogger "Tonia Says" mentions the math difficulty in CP here for further reading

Anonymous said...

Hi Amy
I had a lot of those issues with taking notes that you talked about and keeping up in general in elementary and high school and I found that the teachers didn’t care. Math has always been a weak subject and I have never really caught up because I never understood it.. I understand Elena’s frustration and anxiety as well as yours. In high school I went into an exam missing two chapters of notes.

Anonymous said...

Hi Amy,
I have CP and found these math videos helpful for learning Algebra if you think Elena can learn from videos

My friend who learned math in India says the way math is taught in Western countries tends to block people up regardless of disability because it is too abstract and not based in day to day reality. Can Elena possibly have a note taker WITHOUT having an aide? That is standard practice in colleges as an accommodation but I'm not sure about middle and high school. I would advise you listen to Elena if she says a teaching method does not work for her. I think Elena wants to be self sufficient but because of how the aides did things it sent her a message of "Why try to do it myself if this adult already did it without consulting me?" and it may have extended over to other areas like stretching and life skills at home. Its a form of learned helplessness by IEP and I had it too. Its good you are addressing it now since the IEP system holds back disabled students on many levels and dealing with it now will make a college or job transition much easier later. Glad Viv is doing better. Nice to get an update from you again.

TheCzarsOf45 said...


A major breakthrough happened with algebra class. You and E had to hash out a solution to her problem, you also made sure Elena had ownership of the solution and input on it. She will need to speak up and provide some input on her side of things, as this is key insight needed to help problem solve. And yes, a lot of math is too abstract to this CP diplegic, and engineer. He relies on sensible logic to solve and troubleshoot his life and work.