Recap: Honor Choir Field Trip

Again, pretend it's April.

Elena practiced two mornings a week before school with the Honor Choir. She loved it. I can't say enough about the director, Craig--he is such a wonderful teacher for these young men and women. Anyway, near the end of the school year, the group travels for Chorus competition. This was new for our family; I figured, with any new exposure for a field trip, I'd go as chaperone. Craig and I had met privately about what this field trip would entail, so I could try to plan ahead. It was a four day trip, to Myrtle Beach (by tour bus). Competition, outings, pool, beach, fun museums, shows. I started getting nervous, b/c all those things entail a different set of parameters in terms of E's movement and the amount of supervision she needs. Originally, there were 12 chaperones for 120 kids. I told Craig that in the past, I had 2 other students while chaperoning E in a museum and I couldn't pay attention to the other 2--let alone 9--so I could only really be counted on as a chaperone for Elena, and I'd help when I could. He agreed.

Equipment we brought: wheelchair, leg braces and crutches (obviously), footstool for the bus ride, magnetic pocket (so she could carry her ID), Chorus barre (PVC pipe "barre" handle for when standing on bleachers),  water shoes for beach/pool, beach crutches.

I'm not sure where to begin here...this trip was great in so many ways, but really exhausting. My biggest concerns were the hotel stay; I wanted Elena to stay in a hotel room with her peers, and have fun--but she can't use the hotel room shower. (Don't bother asking about a handicapped room--the hotel managed to fit us in as best they could during spring break week, and I wanted E to be in a room with other students instead of in a handicap room with me). Elena can shower herself without issue when she has a stool to sit on, and a detachable showerhead (which was not available). She and I talked about a plan, and I brought it to Craig--I'd try to quickly wash her in either her room or my room before the students got off the bus (we'd get off early; there's always a chaperone meeting before students leave the bus. This would give us ~10 minutes to quickly get this done--not a lot of time, but enough to make it not super awkward).

The trip was a serious whirlwind of activity--preventing idle time for a large group of teenagers is the only way to keep drama to a minimum, so we were on the go (or getting to/from something) constantly. Typically the structure of the day was breakfast at hotel, outing, lunch at outing, hotel, possible outing, dinner outing, back to hotel. The outings varied by day; if they were at the hotel, it was typically a walk on the beach, or beach or pool time. If they were out, it was Chorus competition, a dinner show (Pirate's Voyage), a singing engagement before a show (Alabama Theater), or a museum/adventure place (Battleship North Carolina, WonderWorks, Aquarium).

Meals were also a challenge. Breakfast was with our chaperone group at the hotel in shifts (my chaperone partner was largely responsible for the rest of our group, bless her). Lunch was typically catered box-lunch style, and we sit where we could. Dinners out for our party of 133 requires a buffet, and that means that it's too hard for Elena to navigate and carry anything; I would ferry food back and forth to her while she sat and ate with other students.

The students were fabulous at their competition! They sounded lovely and had great stage presence. I went backstage with E's "chorus barre", and brought it to the bleachers before/after the show. I thought it was more stable than E's crutches when she had to stand for a long time; if she moves the crutch tip a bit, I'm always afraid she'll place it off the bleacher edge and fall. So she used one crutch and the barre. I think it worked well, but it's a bit awkward to set up and take down b/c it requires another person. E can walk with one crutch pretty well, but if she has to do stairs (if they don't have a banister) she needs a hand. I love watching and listening to Elena sing--one thing she does is stand super tall and straight to project her voice (they all do, but this is more difficult for her) and I'm just so proud of her!

Zoom in pre-performance to show the Chorus Barre (E is very tiny...)

As for the beach or pool, well, those are tough places for E to be--especially the beach. It was a far walk on the sand to our spot (had to find a place where we could watch all the kids) and the water was COLD and the waves were rough. Elena just enjoyed the sun while the majority of her classmates braved the freezing ocean (her choice; I told her I would take her out there if she wanted). She enjoyed swimming in the pool and was able to play with peers there. After the pool there was a big rush to get ready, which was an issue b/c everyone left en masse. Elena was cold and wet and in her water shoes, and it was slippery and very crowded so I had to carry her to ensure her safety, something both of us didn't want.

The group sang for the Alabama Theater (warming up the crowd) and it went well, but it was standing near the edge of the stage with a large group of people, at the end of the day. I was really nervous b/c E looked super crouchy, and partially unstable, especially if she was laughing with classmates. She assured me she was fine. I got looks from two of the gentlemen in our choral ensemble that told me "Lady--don't worry. She's got this. We'll make sure of it." It was kind, sweet, and reassuring...I could have cried.

Wonder Works was crazy. So many fun things to do! E went off with some other students for a while. I would come and go, or stay behind and watch her in case she needed me. The only time she really did was during the indoor ropes course, which she really wanted to do, and was SUPER difficult. We did an out-and-back portion of the course (we veered to the small loop, instead of the larger more crowded one, but it turns out the small loop was more challenging. We never made the loop but we're calling it a success!). I am happy to report that the staff there was not phased by E's disability or that she would need intense close supervision (by me) on the course (climbers are supposed to be going one at a time). 

The other outings I won't mention, because Elena either didn't need much supervision at all (Aquarium) or it was largely sitting and being entertained (Pirate's Voyage, Alabama Theater). The Battleship North Carolina was a lot of steps, but after the long bus ride E needed to get up and move. It was a lot of guarding, but she did as well as possible.

So...lessons from this trip.

1) Always bring the wheelchair. We didn't need it that much, but Elena used it almost every time we brought it out of the bus (I'm guessing...5 times?). 2) I need to start making sure Elena has pockets so she can carry things. Her magnetic pocket is a great idea, but it wiped her room card every time she put it in the pocket. (A backpack is harder for her to manage with crutches...we're working on this). 3) Getting a head start when going anywhere is a must. The only time this was really bad was after the beach/pool day. It was chaos. 4) Elena should work on being able to wash herself quickly in a bathtub (including hair, probably using a cup).

Other lessons...Elena is more like her peers than not. I know this, but honestly this was one of the first times that I could observe her with her classmates out of school. In general, she was included (when fast enough to stay with a group), and as far as I can tell she liked being in a hotel room without a parent. The other students (and chaperones) were kind. There was a good dose of what I call "middle school drama" that was new to me, and it didn't seem to affect Elena very much. Overall it was a great trip, and fantastic to see how capable Elena is and how wonderful and talented these young people are. I am thankful I got to chaperone. It was a great experience.

Update on 6th grade!

Time for a 6th grade update! I'm breaking this up into main discussion points: 1) time management, 2) IEP business, 3) Assistive Technology.

In general, things are going well. We are two grade periods into the school year--Elena is mostly an A student and works hard for it (she got an A in Math first semester, B the second--just for all you wondering about Math. And she even likes Math now! Fist Pump!).

1) Time waits for no one

Her days are very full. Too full, probably. She enjoys school, but finds she has very little free time. This is true because she is busy AND she does not use her time efficiently.

I struggled to NOT have after school appointments every day of the week for Elena. Certain opportunities were impossible to pass up (we travel to JMU twice a week--that's an hour drive each way for a special program, which I'll explain later) and then she has her therapies. She chose Art Club (meets before school on Wednesdays) and she has Honor Choir (which she loves) Tuesdays and Thursdays before school. She has weekly PT (Thursday evening) and we have returned to psych (meltdowns have largely been contained, now it's more social awareness and time management issues) weekly on Wednesday after school.

To recap: Elena has something every day after school except Tuesdays and Fridays. Tuesdays are always homework days, b/c her teachers know she cannot do homework on Mondays (unless it's a worksheet she can do in the car) because of our JMU travel.

She chose to enter the Science Fair (it's optional; she did a GREAT job!) but it was a huge time sink.

So, as you can imagine, time management is a pretty big deal around here. She does not do it well. (One hour to shower and get dressed is typical. Her best time is 20 minutes.) I understand that many middle schoolers struggle with this--but most of those probably have the ability to "hurry up", or don't require as much adult supervision/assistance. We are looking for tools to help Elena manage her time better. She is open to this, but also craves free time. She doesn't want to miss her activities, either because she loves them (Chorus) or knows they are important (PT). She has serious issues with Executive Function (sequencing, ordering, problem solving) and if we could make some progress on these things I think she would have more choice time. She also requires a lot of sleep (typically 10-11 hours).

So, I'm going to try The Checklist: a list of things she has to accomplish in order, and once she finishes a portion (or all) of said list in a certain time she gets a reward. (I HATE THIS because it means she gets a cool reward for something she should already be doing, and something that Vivian already does. I've prepared Vivian for this and we have worked out a deal.) If you've tried this, how did it work out for you?

2. IEP Stuff

I've had a crazy amount of meetings regarding Elena. Briefly, they regard a slew of things related to her IEP, her aide (who is great but E doesn't need all the time), the school psychologist (all good there, just getting our professionals to know each other), Assistive Technology, and her upcoming field trip for her chorus competition (which is totally stressing me out).

In general, our school is great and they want Elena to succeed and be as independent as possible. One hindrance is Elena has a "pathological need for validation" and seeks attention from teachers constantly. We see this at home during homework time; she's made great progress working alone and waiting on questions (I've reorganized the office so she has a great independent workspace, and make myself unavailable until a certain time after E starts her homework). Her teacher tackles this by outlining their work "once you get to THIS point in your work, you can ask questions" or something like that.

Elena's aide has really helped her get organized. She taught Elena how to keep her notebook, how to keep track of assignments and homework for each day (really, they don't have that much; but it takes E longer than your average student). As the year has progressed, her aide helps her less and less with the intent that E will do it herself. There's been a lot of "teachable moments" here...but Elena isn't quite learning that she needs to 1) write down her responsibilities and 2) check what she wrote down in order to make sure she is ready for the next day. Meltdowns ensue. So we return to psych, which is another after school appointment. (Even Elena will admit they are worthwhile.)

There is also the issue that her aide is really only needed for class transitions (to carry her backpack, help her in the elevator, or get to PE or outside time). This means that during class (90 minutes) Elena doesn't need her aide--and understandably, the system doesn't want to pay an aide to be there if they aren't needed. 6th grade is largely in one portion of the school, so there isn't much distance between her first three classes. So, the big push is for Elena to be independent for the first half of the school day--where she is her strongest and most energetic, and best equipped to handle carrying her things before the day tires her out. I've also requested one-crutch walking as much as possible (she uses more leg power, better gait, and less hand support when only using one crutch, but she is slower) during this part of the school day. Sometimes it's hard to fit in, but we're trying.

Our private PT also said that b/c there is so much sitting during the school day, E should get up and stand as much as possible to prevent tightness. I bought her a 12-alarm watch (I think these are largely used for incontinence) where I've set a vibration alarm to buzz twice during each 90-minute class. Elena stands up, looks at the analog clock, and tries to stand tall/stretch until the minute hand makes it to the next number (trying to stand for 5 minutes). I've cleared all this with her teachers, and they are supportive. I think it does help with E's tightness and her alertness in class.

3. AT

Elena has an Assistive Technology team at school. This group of (great) people try to think of ways that technology can make Elena more productive at school. I first met with them last year, needed a way to lighten E's backpack b/c her computer was too heavy. With the charger, it's ~4 lbs. (This doesn't count anything else in her backpack.) The recommended backpack weight for kids is no more than 10% their body weight. (This isn't a well-adopted guideline, I know. But for kids like E who are more prone to scoliosis, this demands attention.) Elena weighs 57 lbs! Her backpack (before any lightening) was almost 12 lbs.

Well, I didn't get a lighter computer (they don't have lighter ones, if I bought my own they wouldn't  have to support it, ultralight ones break easily, etc.) but changes were made. We lightened her load by dropping off her lunch at the first part of the day to her classroom right before lunch; we made her notebook smaller and keep transferring notes every few weeks to a home binder; typically, she leaves her computer at school after her 3rd class (the rest of the day is PE/art/music/creative design) and we have another school computer for home use (she saves all her work onto Google Drive, so it's browser-based and accessible from home). This system isn't perfect, but it's definitely an improvement.

AT also added some really awesome features to her computer--things you can try also. We haven't really put a lot of effort into a lot of technology features yet. Mostly b/c it takes a decent amount of time to learn one, and it might not be helpful--so we've just started to ease into a few.

Learning Ally is an app that can go on a computer or phone. When Elena has a book she needs to read (typically for language arts--some of the books are pretty heavy to tote around) we load an audio version onto Learning Ally. She can read/listen to it on her computer, I can load it onto my phone and she can use it there also. There was a little difficulty going from the paper version to the electronic version (b/c page numbers are not the same) but E worked it out. It was really helpful.

BeeLine Reader is a browser tool that subtly changes the color of your font. It helps by tinting each line a little differently, and helps the reader's eyes stay focused on the line or find their place when going to the next line of text or when taking their eyes off the screen for a moment. It also helps with reading speed and retention.

Dyslexic font is another tool that "weighs" down the text and helps focus on the line being read.

(FYI, I haven't seen any issues with Elena returning to regular paper reading after using these tools.)

Snap & Read is another browser tool that we are starting to use. It is very helpful for creating outlines and makes citing references EASY AS PIE. Elena doesn't use it much, but I can see this making a big impact in the future.

Elena has also tried some talk-to-text options, but so far, they've caused more frustration than help. Our favorite (I guess?) is the talk-to-text feature when using the Google Chrome browser (using a headphone microphone).