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.
Showing posts with label middle school. Show all posts
Showing posts with label middle school. Show all posts
Friday, November 30, 2018
Thursday, October 5, 2017
7th grade: observations and obstacles
Prepare yourselves for a long post! Honestly, I'm not sure how to organize this...here goes.
Elena started seventh grade this year. Fall is always a difficult time; there's the end-of-the-summer blues, the excitement of a new school year, the change in schedule, and the constant issue of time management--those issues are typical. On top of this, Elena has a slew of others: worsening crouch (happens every fall), time crunch, increased responsibilities (see time crunch), struggling independence (wants it, but has issues carrying, keeping up, etc.). I am trying to navigate technical resources (online school curriculum, social media for tweens, assistive technology), and give the right assistance when needed, teach her to be responsible, and give Elena the fun time she wants and deserves. It's challenging, to put it mildly.
Social/Fun time/Time Management
I let all Elena's educators know that social interaction was going to be a huge focus this year. I want her to enjoy her school, extra-curricular activities, and spending time with her classmates. Unfortunately, as a parent, it can be difficult to know what is available for kids around school groups--they are typically not posted online, or sent home as paper flyers. Normally they are advertised on school grounds or during the school announcements--this means I have to depend on Elena to not only pay attention, but also relay the message to me on time about what she is interested in doing. Sounds easy, but it never happened last year, in part, b/c of her leaving early to get to her next class or for school dismissal. We stressed at home for E to pay attention this year to what was being offered. She did, and wanted to do everything--a girl after my own heart. So we had to make a few choices.
Elena was in the Honor Choir last year and loved it. This year, she auditioned again for the elite choir (Honor Choir is a different group)--and she made the cut. They practice 3x/week before school, as well as performances out of school. It's a huge commitment, and has other difficulties (standing for long periods, dress uniform), but the director and I are in good communication and we're making it work. She has to keep up her grades and conduct in order to stay in the elite choir.
She also wanted to join two other groups--a gaming group (Tuesdays before school) and the radio/announcement (audio/visual) group. We asked her to pick one, and she chose the gaming group.
After school she has PT 1x/week, and she has Psych services about once every two weeks. We are looking to phase out psych, but honestly, I'm not sure if we are ready for that. We are still expected to do stretches every night, and the best way to help with her crouch is her TherEx regimen (takes about 20min/day), and we are failing miserably at fitting these in, and she's also supposed to be working on being more helpful around the house (but honestly there is no time for her to help with dinner, or learn to do her own laundry, etc.).
So. How to fit all this in with homework--that's the question, right?
She typically has a math worksheet daily (she was placed in an Advanced Math class this year, and it's tough for her), and two long-term projects (one for Language Arts and one for Science) that require planning and daily reading or writing. It's crucial that Elena not wait until the last minute; she cannot "hurry up" and she reaches an hour of the evening (earlier than her peers, I imagine) where she is no longer productive. She also has up to 9 online math modules to finish per week. She *has* to shower in the evenings, as her morning extracurriculars require her to rise early.
It sounds like a lot. It can be, but honestly, I think it's manageable if you work at a typical speed--which Elena does not. I help by having Elena report everything due for the week (typically assigned on a Monday) and put it on two calendars--one for the month, and one for the week. Her math is hard for her, so she gets a lot of supervision/instruction from us. She does well with her LA and Science homework. She does not triage homework well (executive function alert!) and I can't help her unless she tells me all of her expected assignments--and several slip through the cracks. She has a homework notebook to write down assignments, and only uses it part of the time. Not every teacher posts assignments online, so I must rely on Elena to tell me what is due.
Personal responsibility is key here. Her teachers know of Elena's work pace, and understand that we are doing what we can 1) without trying to make her miserable and 2) giving her some fun time (not much in the evenings, I confess) and I have no problem asking for extra time. Elena occasionally self-sabotages evenings (meltdowns concerning homework, wasting time--executive function again), resulting in a miserable night for everyone here (hence the psych services, which is also helping with executive function).
Assistive Technology/School Help
In order to try to help E increase her efficiency, I've asked her AT team to give us some tools and teach both Elena and myself how to use them. Her online math modules were extremely frustrating for her, in part b/c the type is hard to read (especially with a visual processing issue) so they taught her a shortcut for a magnifier that doesn't impede the use of the program. I think that really helps (when she uses it). The other one that we are using right now is Snap and Read, which creates an outline and references while doing online work. E is starting to use it (she needs to be in the right browser, and of course her digital material uses different ones) and I think it will serve her well.
Elena uses homeroom time to work on homework or to finish classwork that required extra time. (All kids use homeroom time for stuff like this, or reading). I have her pulled 2x/week to work with her math teacher, and 1x/week to work with her LA teacher (E approves this). There is also available math tutoring on most Thursdays before school--Elena has taken advantage of this already.
Independence/Carrying/Peers
Elena is very small for a middle schooler. She can carry her backpack, but in the morning, the pack is at its heaviest; water bottle (for chorus; only part-full), lunch, notebooks; her school computer is only carried in the beginning of the day (it's left at school; we have one for home use, one for school use). She wants to carry her things, b/c that's what other students do. She wants to be independent. BUT when the pack is heavy (and since she's only ~60 lbs, it's heavy for her) it saps her energy as the day continues (as does spasticity). Maintaining energy is a constant struggle--I can tell after a long day, with a heavy backpack, and a strenuous gym class--she looks terrible when I pick her up at the end of the day. (I drive her to and from school to save us about an hour a day of travel time). To save her energy, I ask her aide to carry her backpack--or sometimes, a student (getting to early morning chorus). I know E would rather do it on her own; she knows when she is out of energy, and sometimes it's a bad scene (bad crouch, falls). I don't know how to give her the independence she craves without making everything "ultralite" in her backpack--which will lose ruggedness, cost more, and be unsupported technologically by the school district. And that's just the backpack; carrying other future things (cell phone, keys, money, sunglasses, etc.) that should be accessible is another story. We've been working on Pockets for a while. That's for another post.
Elena and I have talked a lot about independence and school, and in general, she is ultimately in charge with the expectation of being safe and as capable as possible. This translates as help carrying in the morning/when backpack is heavy, and Elena carrying when it is light/end of the day. If she insists on doing it herself, everyone is to let her; the school team understands that ultimately it is E's decision.
Any advice out there, blogland? I'd love time management tips, carrying ideas (that's the next post!), ideas for streamlining homework, etc. If I could keep time in a bottle I'd be a bajillionaire!
Elena started seventh grade this year. Fall is always a difficult time; there's the end-of-the-summer blues, the excitement of a new school year, the change in schedule, and the constant issue of time management--those issues are typical. On top of this, Elena has a slew of others: worsening crouch (happens every fall), time crunch, increased responsibilities (see time crunch), struggling independence (wants it, but has issues carrying, keeping up, etc.). I am trying to navigate technical resources (online school curriculum, social media for tweens, assistive technology), and give the right assistance when needed, teach her to be responsible, and give Elena the fun time she wants and deserves. It's challenging, to put it mildly.
Social/Fun time/Time Management
I let all Elena's educators know that social interaction was going to be a huge focus this year. I want her to enjoy her school, extra-curricular activities, and spending time with her classmates. Unfortunately, as a parent, it can be difficult to know what is available for kids around school groups--they are typically not posted online, or sent home as paper flyers. Normally they are advertised on school grounds or during the school announcements--this means I have to depend on Elena to not only pay attention, but also relay the message to me on time about what she is interested in doing. Sounds easy, but it never happened last year, in part, b/c of her leaving early to get to her next class or for school dismissal. We stressed at home for E to pay attention this year to what was being offered. She did, and wanted to do everything--a girl after my own heart. So we had to make a few choices.
Elena was in the Honor Choir last year and loved it. This year, she auditioned again for the elite choir (Honor Choir is a different group)--and she made the cut. They practice 3x/week before school, as well as performances out of school. It's a huge commitment, and has other difficulties (standing for long periods, dress uniform), but the director and I are in good communication and we're making it work. She has to keep up her grades and conduct in order to stay in the elite choir.
She also wanted to join two other groups--a gaming group (Tuesdays before school) and the radio/announcement (audio/visual) group. We asked her to pick one, and she chose the gaming group.
After school she has PT 1x/week, and she has Psych services about once every two weeks. We are looking to phase out psych, but honestly, I'm not sure if we are ready for that. We are still expected to do stretches every night, and the best way to help with her crouch is her TherEx regimen (takes about 20min/day), and we are failing miserably at fitting these in, and she's also supposed to be working on being more helpful around the house (but honestly there is no time for her to help with dinner, or learn to do her own laundry, etc.).
So. How to fit all this in with homework--that's the question, right?
She typically has a math worksheet daily (she was placed in an Advanced Math class this year, and it's tough for her), and two long-term projects (one for Language Arts and one for Science) that require planning and daily reading or writing. It's crucial that Elena not wait until the last minute; she cannot "hurry up" and she reaches an hour of the evening (earlier than her peers, I imagine) where she is no longer productive. She also has up to 9 online math modules to finish per week. She *has* to shower in the evenings, as her morning extracurriculars require her to rise early.
It sounds like a lot. It can be, but honestly, I think it's manageable if you work at a typical speed--which Elena does not. I help by having Elena report everything due for the week (typically assigned on a Monday) and put it on two calendars--one for the month, and one for the week. Her math is hard for her, so she gets a lot of supervision/instruction from us. She does well with her LA and Science homework. She does not triage homework well (executive function alert!) and I can't help her unless she tells me all of her expected assignments--and several slip through the cracks. She has a homework notebook to write down assignments, and only uses it part of the time. Not every teacher posts assignments online, so I must rely on Elena to tell me what is due.
Personal responsibility is key here. Her teachers know of Elena's work pace, and understand that we are doing what we can 1) without trying to make her miserable and 2) giving her some fun time (not much in the evenings, I confess) and I have no problem asking for extra time. Elena occasionally self-sabotages evenings (meltdowns concerning homework, wasting time--executive function again), resulting in a miserable night for everyone here (hence the psych services, which is also helping with executive function).
Assistive Technology/School Help
In order to try to help E increase her efficiency, I've asked her AT team to give us some tools and teach both Elena and myself how to use them. Her online math modules were extremely frustrating for her, in part b/c the type is hard to read (especially with a visual processing issue) so they taught her a shortcut for a magnifier that doesn't impede the use of the program. I think that really helps (when she uses it). The other one that we are using right now is Snap and Read, which creates an outline and references while doing online work. E is starting to use it (she needs to be in the right browser, and of course her digital material uses different ones) and I think it will serve her well.
Elena uses homeroom time to work on homework or to finish classwork that required extra time. (All kids use homeroom time for stuff like this, or reading). I have her pulled 2x/week to work with her math teacher, and 1x/week to work with her LA teacher (E approves this). There is also available math tutoring on most Thursdays before school--Elena has taken advantage of this already.
Independence/Carrying/Peers
Elena is very small for a middle schooler. She can carry her backpack, but in the morning, the pack is at its heaviest; water bottle (for chorus; only part-full), lunch, notebooks; her school computer is only carried in the beginning of the day (it's left at school; we have one for home use, one for school use). She wants to carry her things, b/c that's what other students do. She wants to be independent. BUT when the pack is heavy (and since she's only ~60 lbs, it's heavy for her) it saps her energy as the day continues (as does spasticity). Maintaining energy is a constant struggle--I can tell after a long day, with a heavy backpack, and a strenuous gym class--she looks terrible when I pick her up at the end of the day. (I drive her to and from school to save us about an hour a day of travel time). To save her energy, I ask her aide to carry her backpack--or sometimes, a student (getting to early morning chorus). I know E would rather do it on her own; she knows when she is out of energy, and sometimes it's a bad scene (bad crouch, falls). I don't know how to give her the independence she craves without making everything "ultralite" in her backpack--which will lose ruggedness, cost more, and be unsupported technologically by the school district. And that's just the backpack; carrying other future things (cell phone, keys, money, sunglasses, etc.) that should be accessible is another story. We've been working on Pockets for a while. That's for another post.
Elena and I have talked a lot about independence and school, and in general, she is ultimately in charge with the expectation of being safe and as capable as possible. This translates as help carrying in the morning/when backpack is heavy, and Elena carrying when it is light/end of the day. If she insists on doing it herself, everyone is to let her; the school team understands that ultimately it is E's decision.
Any advice out there, blogland? I'd love time management tips, carrying ideas (that's the next post!), ideas for streamlining homework, etc. If I could keep time in a bottle I'd be a bajillionaire!
Wednesday, August 2, 2017
Recap: End of 6th grade and other stuff
Pretend it's April/May/June.
Right after Elena's Honor Choir field trip, she had a field trip to Shenandoah National Park (literally the next day). The weather was horrible (pouring rain), Elena got left behind on the hike (I was seriously pissed off, but things happen). She was with her aide and myself. Long story, lessons learned, etc. but in essence, just about everyone on that trip was pretty miserable. At any rate, it was *memorable*.
We went to a friend's beach house (so lovely!). We played games, played in the ocean, E and Viv even got to kayak and paddleboard! We had such a GREAT TIME. Super fun, and the kids were pretty independent. As a matter of fact, their first move on the beach was to paddleboard out of sight (quickly followed by parents).
Elena had her 12th birthday. TWELVE. Honestly, there's so much to say, but as I'm still playing catch-up, I'll leave it at this: Elena is rocking it right now. She has a good sense of her disability, is very real about it, but tries very hard to not let it get in her way. She is growing more responsible and mature (but not too quickly!) and makes us proud every day. We love you E!
May consisted of school SOLs (Standard of Learning) and Elena had goals to pass all of them, with an Advanced Pass in Language Arts (she has never had an advanced pass, and in the past these tests have been incredibly anxiety provoking and she has failed several). She only had two; she passed her Math SOL (solidly!) and was one point away from an Advanced Pass in LA. Wow!
June was the end of school wrap-up; concerts (Elena), performance (Vivian), sports (baseball for Viv), and a flurry of academic presentations to showcase the kids' achievements. Honestly, it felt like something was happening every evening for the first two weeks of June. I loved seeing what the kids (and their friends) had accomplished this year--impressive!
Vivian ended the school year with great grades (numbers, not letter grades or tests yet, much to her dismay) and Elena ended up with all As (including MATH!!!) with one high B (Language Arts). She worked HARD for those grades, I tell you. What a year. I can't believe I'm writing this, but 6th grade was a smash hit!!
Right after Elena's Honor Choir field trip, she had a field trip to Shenandoah National Park (literally the next day). The weather was horrible (pouring rain), Elena got left behind on the hike (I was seriously pissed off, but things happen). She was with her aide and myself. Long story, lessons learned, etc. but in essence, just about everyone on that trip was pretty miserable. At any rate, it was *memorable*.
 |
| Just...horrible. (This was a short break in the pouring rain.) |
We went to a friend's beach house (so lovely!). We played games, played in the ocean, E and Viv even got to kayak and paddleboard! We had such a GREAT TIME. Super fun, and the kids were pretty independent. As a matter of fact, their first move on the beach was to paddleboard out of sight (quickly followed by parents).
 |
| Paddleboarding! |
 |
| How I like to kayak. |
Elena had her 12th birthday. TWELVE. Honestly, there's so much to say, but as I'm still playing catch-up, I'll leave it at this: Elena is rocking it right now. She has a good sense of her disability, is very real about it, but tries very hard to not let it get in her way. She is growing more responsible and mature (but not too quickly!) and makes us proud every day. We love you E!
 |
| E at the school Track Meet. Her relay team was AWESOME. She is carrying her baton in her "pocket shirt". |
May consisted of school SOLs (Standard of Learning) and Elena had goals to pass all of them, with an Advanced Pass in Language Arts (she has never had an advanced pass, and in the past these tests have been incredibly anxiety provoking and she has failed several). She only had two; she passed her Math SOL (solidly!) and was one point away from an Advanced Pass in LA. Wow!
June was the end of school wrap-up; concerts (Elena), performance (Vivian), sports (baseball for Viv), and a flurry of academic presentations to showcase the kids' achievements. Honestly, it felt like something was happening every evening for the first two weeks of June. I loved seeing what the kids (and their friends) had accomplished this year--impressive!
Vivian ended the school year with great grades (numbers, not letter grades or tests yet, much to her dismay) and Elena ended up with all As (including MATH!!!) with one high B (Language Arts). She worked HARD for those grades, I tell you. What a year. I can't believe I'm writing this, but 6th grade was a smash hit!!
Friday, December 9, 2016
Middle School: Welcome to 6th grade
This post is behind schedule, but it's nice that I have more of an experience to write about now that it's been a few months since Elena started middle school.
I had a few meetings with her IEP transition team at the end of 5th grade; basically, I met with someone from special ed and her new case manager. We talked about where she was in 5th grade, and they gave some suggestions based on the largest differences between the environments--but they had never met Elena, and I had never toured the new school. The key theme was the difference in size (in the general sense); building, number of students in classes, distance between things, homework load, responsibility, etc. Basically I was being warned about the beast that was middle school--when previously I was worried more about E's self-esteem, making friends, self-advocating for herself, and trying to gain independence. They started brainstorming about all sorts of adaptations for school, without seeing if she would actually need them. Honestly, I was so overwhelmed with our discussion I decided I would just have to wing it as best I could, withe one exception: I was adamant that she have a full-time aide (Elena didn't have one in 5th grade, and she loved it; I figured she may think it was taking a step backward, but I could tell it was non-negotiable).
Here's the good part: overall, her experience is very positive. I organized a meeting prior to school with all her teachers to try to prime them about Elena, with the key undertone of working together to help her use her time wisely. I could feel the teachers rolling their eyes thinking "here's another mom freaking out about homework", but when I put her situation in different terms, they started to listen. I said "as a general rule, it takes Elena four times as long to do things as other people. To do ALL THINGS--get dressed, brush her teeth, eat, go down steps, get in a car, write, read, open a backpack--ALL THINGS". Time is a precious resource to us. This means that every minute wasted out of frustration, or being idle, or spent on a worthless adaptation affects her life in a huge way--because with Elena, there is no "hurrying up". In order to make this work, I needed homework given in advance in order for us to ensure it would be turned in on time; she has extra time for work prescribed in her IEP (but I expect her to be responsible for her work as close to on time as possible). I could tell that most of her team was listening with intent--which was pretty good, as she has a lot of teachers.
And speaking of time, the only way to carve out some extra time was for her to get a ride to school. The county refused my request for private transport; I'm still working on this, but for now I am happy to drive her. It takes 8 minutes instead of 30+ each way and I get to recap her day with her aide. This is only really an issue 2 out of 5 days of the week; E has appointments right after school 3 days a week (special exercise program for biking, psychology, PT). School starts late here, and they get out late (4pm); this means there isn't that much time to do something fun/have appointments, eat, and do homework before bedtime (~830 pm--E needs a lot of rest).
Her aide is very helpful. She helps her organize her homework (there is so much issued and turned in online, it's mind-boggling), and carries her backpack/lunch when she is tired or her posture is too poor to manage extra weight. Elena typically has an extreme crouch situation in the fall because of the demands of school (lots of sitting, etc.) and this year is no exception. Her crouch is pretty bad, but objectively I think I've seen worse. Her backpack is heavy (I'm working with the Assistive Technology team to try to help this) but her classes are close to each other, and she only needs it in the first three periods of the day, when her energy is good. She wants to carry her own things and be self-sufficient--but she speaks up when she needs help because she feels unsafe or she is tired. In general, her teachers know I want her space to be accessible but also within the working group (socialization is a key element I stress with her educators). Her aide is close by, but tries to stay "invisible" so Elena can fit in as best she can. She leaves her classes a little early so she can navigate the hallways before they fill with students. The hardest times to manage are lunch (the lunchroom is loud, lots of people, and lots of fall hazards and a short time to eat)(she has designated snacktimes so she has enough opportunity to eat) and gym (outside fields are FAR away, inside gym is packed, needs Adaptive P.E. or other help).
Aside from all that, I wanted Elena to find something to enjoy, with peers, and make friends. I let her team know that I would make this a priority and try to help manage everything else. Because school gets out late, a lot of activities take place before the starting bell. Elena joined the art club, which she likes, and auditioned for a special choral group. Honor Choir meets twice a week before school; she loves it.
Managing the kids at school and ensuring downtime is very time consuming for me. Much more than I expected...it's a full-time job. It's much more difficult than elementary school. Time crunches/conflicts frequently end up in full-blown meltdowns, bringing the home to a standstill (hence our return to the psychologist--which is going very well, not to mention I think it would be a good thing for Elena to have a relationship with one through middle school). Rest is incredibly important, and we stress reasonable bedtimes and downtime. But it's a lot to fit in.
As for adaptations, that's still a work in progress. I have a few in mind that we haven't really tried yet; we'll have some experience with these by the end of the year, and I'll report about that. I'm not particularly tech savvy, but I hope Elena becomes so.
And the best news? Elena is getting great grades, she's very responsible with her schoolwork (if only that could spill over to things at home!), and overall she seems happy. Her favorite subjects are Chorus and her Advanced Language Arts class. She is doing well and we are so very proud of her.
I had a few meetings with her IEP transition team at the end of 5th grade; basically, I met with someone from special ed and her new case manager. We talked about where she was in 5th grade, and they gave some suggestions based on the largest differences between the environments--but they had never met Elena, and I had never toured the new school. The key theme was the difference in size (in the general sense); building, number of students in classes, distance between things, homework load, responsibility, etc. Basically I was being warned about the beast that was middle school--when previously I was worried more about E's self-esteem, making friends, self-advocating for herself, and trying to gain independence. They started brainstorming about all sorts of adaptations for school, without seeing if she would actually need them. Honestly, I was so overwhelmed with our discussion I decided I would just have to wing it as best I could, withe one exception: I was adamant that she have a full-time aide (Elena didn't have one in 5th grade, and she loved it; I figured she may think it was taking a step backward, but I could tell it was non-negotiable).
Here's the good part: overall, her experience is very positive. I organized a meeting prior to school with all her teachers to try to prime them about Elena, with the key undertone of working together to help her use her time wisely. I could feel the teachers rolling their eyes thinking "here's another mom freaking out about homework", but when I put her situation in different terms, they started to listen. I said "as a general rule, it takes Elena four times as long to do things as other people. To do ALL THINGS--get dressed, brush her teeth, eat, go down steps, get in a car, write, read, open a backpack--ALL THINGS". Time is a precious resource to us. This means that every minute wasted out of frustration, or being idle, or spent on a worthless adaptation affects her life in a huge way--because with Elena, there is no "hurrying up". In order to make this work, I needed homework given in advance in order for us to ensure it would be turned in on time; she has extra time for work prescribed in her IEP (but I expect her to be responsible for her work as close to on time as possible). I could tell that most of her team was listening with intent--which was pretty good, as she has a lot of teachers.
And speaking of time, the only way to carve out some extra time was for her to get a ride to school. The county refused my request for private transport; I'm still working on this, but for now I am happy to drive her. It takes 8 minutes instead of 30+ each way and I get to recap her day with her aide. This is only really an issue 2 out of 5 days of the week; E has appointments right after school 3 days a week (special exercise program for biking, psychology, PT). School starts late here, and they get out late (4pm); this means there isn't that much time to do something fun/have appointments, eat, and do homework before bedtime (~830 pm--E needs a lot of rest).
Her aide is very helpful. She helps her organize her homework (there is so much issued and turned in online, it's mind-boggling), and carries her backpack/lunch when she is tired or her posture is too poor to manage extra weight. Elena typically has an extreme crouch situation in the fall because of the demands of school (lots of sitting, etc.) and this year is no exception. Her crouch is pretty bad, but objectively I think I've seen worse. Her backpack is heavy (I'm working with the Assistive Technology team to try to help this) but her classes are close to each other, and she only needs it in the first three periods of the day, when her energy is good. She wants to carry her own things and be self-sufficient--but she speaks up when she needs help because she feels unsafe or she is tired. In general, her teachers know I want her space to be accessible but also within the working group (socialization is a key element I stress with her educators). Her aide is close by, but tries to stay "invisible" so Elena can fit in as best she can. She leaves her classes a little early so she can navigate the hallways before they fill with students. The hardest times to manage are lunch (the lunchroom is loud, lots of people, and lots of fall hazards and a short time to eat)(she has designated snacktimes so she has enough opportunity to eat) and gym (outside fields are FAR away, inside gym is packed, needs Adaptive P.E. or other help).
Aside from all that, I wanted Elena to find something to enjoy, with peers, and make friends. I let her team know that I would make this a priority and try to help manage everything else. Because school gets out late, a lot of activities take place before the starting bell. Elena joined the art club, which she likes, and auditioned for a special choral group. Honor Choir meets twice a week before school; she loves it.
Managing the kids at school and ensuring downtime is very time consuming for me. Much more than I expected...it's a full-time job. It's much more difficult than elementary school. Time crunches/conflicts frequently end up in full-blown meltdowns, bringing the home to a standstill (hence our return to the psychologist--which is going very well, not to mention I think it would be a good thing for Elena to have a relationship with one through middle school). Rest is incredibly important, and we stress reasonable bedtimes and downtime. But it's a lot to fit in.
As for adaptations, that's still a work in progress. I have a few in mind that we haven't really tried yet; we'll have some experience with these by the end of the year, and I'll report about that. I'm not particularly tech savvy, but I hope Elena becomes so.
And the best news? Elena is getting great grades, she's very responsible with her schoolwork (if only that could spill over to things at home!), and overall she seems happy. Her favorite subjects are Chorus and her Advanced Language Arts class. She is doing well and we are so very proud of her.
Thursday, April 14, 2016
IEP and Assessment Overload (recap)
I'm happy to report that I'm past the "assessment fog" that persisted for the past, what, two months?
Assessments are good. I mean, it's important to know 1) where one (Elena) is regarding her physical/academic/social progression, 2) what are the next logical areas for improvement, and 3) realistic preparations for the future. Better to know than get, in Elena's words, "the bad surprise".
But they can really be a downer. Assessments can show you how far behind the curve your child is, if/when they will need intervention, and shove it in your face how hard it is to integrate them into normal life.
In our case, it was just…a lot of information. I guess I've been doing this long enough that the setbacks/differences aren't upsetting as much as this whole process (preparing for middle school from elementary school) is overwhelming. So. Much. Information.
I'm going to break down this recap into private assessments vs. school (public) IEP notes.
Private Assessment.
This isn't necessarily to prepare Elena for middle school, but our PT stressed to me on multiple occasions that Elena should be evaluated for Occupational Therapy. I did this through the school earlier this year; E didn't qualify for services. Basically, she was in the lower to normal range of fine motor skills (finish the picture, trace a certain line, identify shapes in an array, pick up small items, etc.). It took her longer to do the tasks, but she still scored within "normal" range. There was a definite deficiency in visual (FIND SPECIFIC WORD) processing--where the question involved moving a shape in your mind to find the answer. Basically, if Elena had to involve a motor process--pen to paper, for instance--she was going to perform better than if she had to do it in her head. In itself, this is not highly unusual; lots of people perform better when using hand-eye-mind coordination than just one at a time.
I chewed on that for a while. Our PT strongly suggested I do a private evaluation--where they would look at things that would impact her life in general, not just her academic performance. Jason and I were definitely looking for some help in this area, mostly related to time management and self-care. We had an OT assessment performed last month. Elena qualified for services. Her greatest deficiency is called "executive function", which as far as I can tell, means "figure out what you need to do in a space efficiently, in order, so you can leave that space and do the next thing". As in, get dressed in your room, and do other things in your room (deodorant, brush hair, put hair up) before coming downstairs (instead of going up the stairs because you didn't put on socks, or shoes, or leave the only hairbrush you'll use up there etc.) . Use the bathroom before sitting down to eat, etc. Our OT gave us this homework (which she has never done before, for various reasons): When Elena wakes up (not on a school day), tell her to make her own breakfast. (I told her there was a smaller container of milk in the fridge; there is plasticware in a lower cabinet). She had to figure out what to do, what to move, how she would carry, etc., and problem-solve through the task. (It took a long time--but she did it, very well. No disasters yet, but when they happen, it'll be a learning situation).
Other things to work on involve her arms not at her sides (washing her hair in the shower, for instance--she's doing well, but it's a work in progress), ordering, organizing (regarding homework, diligence in cleaning up (otherwise she'll lose work, or trip over her things, or forget them, etc.).
The OT assessment and IEP were basically done around the same time; I didn't talk to E about them because I didn't want her to feel like there were all these things "to fix". Really, these are things that a lot of kids work on--but for Elena, they pile up and up and up--I don't want her to be overwhelmed with therapy or improvement tasks. It's a new idea for me. AND all this was going on during the school play production--so, a lot was already going on, so I figured any OT work was going to have to wait until after Spring Break.
School IEP.
This was a huge one. We met FOR THREE HOURS. I wasn't apprehensive of this meeting--Elena's educational team is truly fantastic, and want the best for her. There was one rep from the middle school (Special Ed; the PT was not available), and some of her current educators. Overall, the meeting was positive--very eye-opening for me.
My only experience with middle school was mine. The short version is it was fine, mostly positive; technologically lacking and no one had ever heard of an IEP. Times have changed, and I feel like new parents of middle-schoolers feel like they must be going to some alien nation where the only familiar thing is their child.
The Cliff Notes: Elena will have a full-time aide. This will probably feel like a setback for her, b/c for the first time she doesn't have one this year--and she's doing well. The school is just so much bigger, the classes much further apart, the necessity to carry and be on time--she'll need one. She will get her homework in advance (apparently most kids get the week's work on Monday anyway), and will have extra time to complete tests and large projects. She will have two sets of books (one at school, one at home) so she does not need to carry them at school. The kids get laptops--I asked how heavy they were. They said "pretty light"--that doesn't mean she can carry them, though. We'll have to test whether or not she can manipulate it and put/carry it in her backpack and plan accordingly. They have stairs and an elevator (only on one side of the school), they'll need to figure how what's fast/safe/appropriate. She'll have adaptive PE (pull-out), on a schedule she wants; they will also let her work on skills that they don't necessarily work on at school (her choice! she could bring in her bike, for instance, or do trampoline work, or try to work on tennis). We're not sure about lunchroom yet. She will have a special chair for each class (they made one last year, looks just like everyone else's chair but has a clear footrest so she has her best posture). Since there are multiple classrooms, she will have to have multiple chairs (that will have to be moved when the classes exchange). The logistics are complicated. They have a science lab, where kids sit, or typically stand. They use flames, for instance (what will E do? She can't use her hands without leaning on a surface, not great for heating elements or knives, and she can't sit down or be in a stander--what if she spills something caustic or catches fire? Things to think about!).
If that wasn't enough, the biggest issue I see for Elena is time. Things take her longer--walking, writing (they want us to use talk-to-text, I have mixed thoughts), self-care, moving things, eating. I tried to find something that could be done to save her some time…she needs more rest than her peers, so staying up late isn't a source of more time. Here middle school starts later than elementary--which means they get home later, and have more homework, making the after school-before bedtime squeeze even worse. After school they have cool activities (non-sport) that I think E would love; I don't want her to feel like she can't participate, or has to spend all her time with tutors. My best quick fix is to drive her to/from school. I figure that saves 20-30 minutes on each side of the day. I've been trying that lately, and it makes a huge difference (more on that in another post) in terms of fitting in fun, homework, and good rest.
There's more, but it's a jumble in my brain and I've put all the paperwork to rest for a while because I don't want to look at it right now.
Overall--I think we are in good hands. Her team want what is best for her, they want to work with me, and more importantly--they want Elena to have control over what she thinks is important. Elena is nervous about middle school; a lot of kids are. Jason thinks it'll be great (eternal optimist!). Elena tends to pleasantly surprise me in situations like this, so I'm crossing my fingers.
Assessments are good. I mean, it's important to know 1) where one (Elena) is regarding her physical/academic/social progression, 2) what are the next logical areas for improvement, and 3) realistic preparations for the future. Better to know than get, in Elena's words, "the bad surprise".
But they can really be a downer. Assessments can show you how far behind the curve your child is, if/when they will need intervention, and shove it in your face how hard it is to integrate them into normal life.
In our case, it was just…a lot of information. I guess I've been doing this long enough that the setbacks/differences aren't upsetting as much as this whole process (preparing for middle school from elementary school) is overwhelming. So. Much. Information.
I'm going to break down this recap into private assessments vs. school (public) IEP notes.
Private Assessment.
This isn't necessarily to prepare Elena for middle school, but our PT stressed to me on multiple occasions that Elena should be evaluated for Occupational Therapy. I did this through the school earlier this year; E didn't qualify for services. Basically, she was in the lower to normal range of fine motor skills (finish the picture, trace a certain line, identify shapes in an array, pick up small items, etc.). It took her longer to do the tasks, but she still scored within "normal" range. There was a definite deficiency in visual (FIND SPECIFIC WORD) processing--where the question involved moving a shape in your mind to find the answer. Basically, if Elena had to involve a motor process--pen to paper, for instance--she was going to perform better than if she had to do it in her head. In itself, this is not highly unusual; lots of people perform better when using hand-eye-mind coordination than just one at a time.
I chewed on that for a while. Our PT strongly suggested I do a private evaluation--where they would look at things that would impact her life in general, not just her academic performance. Jason and I were definitely looking for some help in this area, mostly related to time management and self-care. We had an OT assessment performed last month. Elena qualified for services. Her greatest deficiency is called "executive function", which as far as I can tell, means "figure out what you need to do in a space efficiently, in order, so you can leave that space and do the next thing". As in, get dressed in your room, and do other things in your room (deodorant, brush hair, put hair up) before coming downstairs (instead of going up the stairs because you didn't put on socks, or shoes, or leave the only hairbrush you'll use up there etc.) . Use the bathroom before sitting down to eat, etc. Our OT gave us this homework (which she has never done before, for various reasons): When Elena wakes up (not on a school day), tell her to make her own breakfast. (I told her there was a smaller container of milk in the fridge; there is plasticware in a lower cabinet). She had to figure out what to do, what to move, how she would carry, etc., and problem-solve through the task. (It took a long time--but she did it, very well. No disasters yet, but when they happen, it'll be a learning situation).
Other things to work on involve her arms not at her sides (washing her hair in the shower, for instance--she's doing well, but it's a work in progress), ordering, organizing (regarding homework, diligence in cleaning up (otherwise she'll lose work, or trip over her things, or forget them, etc.).
The OT assessment and IEP were basically done around the same time; I didn't talk to E about them because I didn't want her to feel like there were all these things "to fix". Really, these are things that a lot of kids work on--but for Elena, they pile up and up and up--I don't want her to be overwhelmed with therapy or improvement tasks. It's a new idea for me. AND all this was going on during the school play production--so, a lot was already going on, so I figured any OT work was going to have to wait until after Spring Break.
School IEP.
This was a huge one. We met FOR THREE HOURS. I wasn't apprehensive of this meeting--Elena's educational team is truly fantastic, and want the best for her. There was one rep from the middle school (Special Ed; the PT was not available), and some of her current educators. Overall, the meeting was positive--very eye-opening for me.
My only experience with middle school was mine. The short version is it was fine, mostly positive; technologically lacking and no one had ever heard of an IEP. Times have changed, and I feel like new parents of middle-schoolers feel like they must be going to some alien nation where the only familiar thing is their child.
The Cliff Notes: Elena will have a full-time aide. This will probably feel like a setback for her, b/c for the first time she doesn't have one this year--and she's doing well. The school is just so much bigger, the classes much further apart, the necessity to carry and be on time--she'll need one. She will get her homework in advance (apparently most kids get the week's work on Monday anyway), and will have extra time to complete tests and large projects. She will have two sets of books (one at school, one at home) so she does not need to carry them at school. The kids get laptops--I asked how heavy they were. They said "pretty light"--that doesn't mean she can carry them, though. We'll have to test whether or not she can manipulate it and put/carry it in her backpack and plan accordingly. They have stairs and an elevator (only on one side of the school), they'll need to figure how what's fast/safe/appropriate. She'll have adaptive PE (pull-out), on a schedule she wants; they will also let her work on skills that they don't necessarily work on at school (her choice! she could bring in her bike, for instance, or do trampoline work, or try to work on tennis). We're not sure about lunchroom yet. She will have a special chair for each class (they made one last year, looks just like everyone else's chair but has a clear footrest so she has her best posture). Since there are multiple classrooms, she will have to have multiple chairs (that will have to be moved when the classes exchange). The logistics are complicated. They have a science lab, where kids sit, or typically stand. They use flames, for instance (what will E do? She can't use her hands without leaning on a surface, not great for heating elements or knives, and she can't sit down or be in a stander--what if she spills something caustic or catches fire? Things to think about!).
If that wasn't enough, the biggest issue I see for Elena is time. Things take her longer--walking, writing (they want us to use talk-to-text, I have mixed thoughts), self-care, moving things, eating. I tried to find something that could be done to save her some time…she needs more rest than her peers, so staying up late isn't a source of more time. Here middle school starts later than elementary--which means they get home later, and have more homework, making the after school-before bedtime squeeze even worse. After school they have cool activities (non-sport) that I think E would love; I don't want her to feel like she can't participate, or has to spend all her time with tutors. My best quick fix is to drive her to/from school. I figure that saves 20-30 minutes on each side of the day. I've been trying that lately, and it makes a huge difference (more on that in another post) in terms of fitting in fun, homework, and good rest.
There's more, but it's a jumble in my brain and I've put all the paperwork to rest for a while because I don't want to look at it right now.
Overall--I think we are in good hands. Her team want what is best for her, they want to work with me, and more importantly--they want Elena to have control over what she thinks is important. Elena is nervous about middle school; a lot of kids are. Jason thinks it'll be great (eternal optimist!). Elena tends to pleasantly surprise me in situations like this, so I'm crossing my fingers.
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