Tuesday, April 18, 2017

The Bike Project

I've had a few references in past posts about time management, how some our days E can't do homework, and that our weekends are packed. Here's why.

Every year (for the past...7 years or so) the engineering department at JMU develops a human powered vehicle (HPV) for one individual. The entire class (one year, second year maybe?) divides into groups (of ~8 people) and create a prototype HPV for one end user. Depending on the year's class, there are 6+ prototypes. At the end of the project, the end user is provided a custom made HPV selected from the prototype models.

Contingent on the end user's agreement is participation in Overcoming Barriers (OCB), a program developed by JMU Kinesiology professor Dr. Tom Moran to provide athletic conditioning for underserved youth (typically youth with various disabilities). Each participant is paired with a JMU student mentor and there are several classes to choose from; the HPV end user has to pick two of these to demonstrate a commitment to physical fitness.

I met Tom several years ago while he was getting his doctorate at UVA; he has been considering Elena as a possible HPV end user for some time, but wanted her to be bigger, stronger, and ready to commit. We were asked if we would like to participate at the end of summer 2016; we agreed.

This agreement means we have committed to driving an hour (each way) to JMU to participate in adapted sports programs, as well as visiting the engineering department separately (as needed) since September. In general we selected one weeknight (usually Mondays, as Elena receives her homework for the week on that day and can select which assignments she can do in the car during the drive) and one weekend (Saturdays mornings). Vivian, while typically developing, also takes part in Monday activities (and has her own mentor) since we leave for JMU right after E gets picked up from school. The kids chose Tennis on Mondays, and Aquatics on Saturdays. As you can imagine, this puts a lot of pressure on E to get her schoolwork done on time. E's educators know our commitment and were willing to work with our constraints. The kids enjoy the classes (E has made some serious improvement with tennis using one crutch--including a bounce serve!) and the environment is constantly encouraging and inclusive. Aquatics guarantees E will be ready for summer swim team, which she wants to continue (hopefully with a legal breaststroke sometime this season!). We were given one point-of-contact-person to field questions, work to coordinate between the Kinesiology and Engineering department, and serve as E's mentor. Thank you Julia!

Elena currently has her Triton X-100 pink recumbent bike and a 16" two-wheeler with training wheels. Last September, her ability to use these HPVs was limited to a completely flat surface, she needed help getting in/on the bike, and her feet had to be strapped in so they would stay on the pedals. The recumbent bike had a huge turning radius and if she got stuck, a grown up would have to back her up b/c her feet were strapped in. She also has tipped it twice b/c she had a slow reaction time and needed more strength to use the hand brake. With the two-wheeler (with training wheels), she worked on turning (through doorways) and used coaster and hand brakes. E's main PT took the training wheels off last fall, trying to teach Elena that she needed to put her foot on the floor to prevent falling--some progress was made. Elena is way too tall for that two-wheeler now; any larger, readily available bike is too high for her to step over, too large for her to manage, and too large for any typical training wheel. We started to use the recumbent again, this time with her feet not strapped to the pedals, but they occasionally fall off (E still isn't sure how to "push" her feet against the pedals all the time to keep constant contact). She typically drives the pedal with her heel/end of foot, and due to the femoral/tibial anteversion of her bones, in order for her knees not to knock she angles her toes outward, heels inward on the pedals. Frequently her heels end up on the crank arm of the pedals and it annoys her.

In the beginning of the Bike Project, E would go to her class and I would answer questions from the engineering students press-room style and they would take notes. After OCB class E would do the same. The students got to know what Elena likes, what she wanted in a bike, what I wanted in a bike, what we had that didn't work, and what would ensure her safety. Here's what I can remember of our original wish list:

Elena's perfect bike:
independent operation
able to go up hills
able to go fast and stop fast
look attractive (like a two wheeler)
colored pink and green
have a basket and water bottle

My perfect bike:
independent operation, including mounting and dismounting
not look like a baby tricycle or "tank" (huge adaptive bike)
able to fit on a standard bike rack (ideal), but fitting in the back of the van is acceptable as long as the family can go biking using one vehicle (E, Viv bikes in back of car, while adult bikes on external hitch rack)
"teachable"--meaning E could use this to graduate to a two-wheeled bike
have gears so she can go up (reasonable-sized) hills; our neighborhood hills are probably too steep but it would be GREAT if she could ride to a friend's house

So the engineering students set to work.

This whole process is fascinating.

I went to the prototype presentations last week; 12 groups presented their alpha models.

E rode prototypes yesterday.  Stay tuned!

Thursday, March 23, 2017

Science Fair

When Elena started 6th grade, we talked about the Science Fair. When I was young, it was mandatory--and I knew that if Elena was to do a quality project, we'd have to start early. So, we started discussing ideas in September 2016,  and the project began shortly after. We found out in January 2017 that the Science Fair was optional. She wanted to do a project that "might help people like me with CP". I suggested she incorporate 3D printing. We have access to a 3D printer through our local library (and they have some at school, but not in any of Elena's classes at that time).

Elena decided to try to make handed grips for her crutches. As we were researching this idea, we noticed that there weren't options for kids that were readily available. They are common for adults, especially those that use canes. Handed crutches (anatomical grips) are supposed to be more comfortable and reduce fatigue.

Our orthotist let us use his 3D scanner to create 3D images. We had to make hand impressions on molds on her crutch handles--we planned on using play-doh, but when the time came we couldn't find any--so I quickly made some pasta dough and we used that. It was a bit rushed, but the strong dough was probably a better substrate than soft play-doh.

Elena took the images and manipulated them using the program 3D Builder. I helped with this--E knows the program better than I do, but I can visualize things in a 3D space better than she can. Together we made a decent team. We printed out some grips, made some changes, tried again, etc. Elena ended up with a pair of handed grips, with memory foam on the bottom (adhesive backing), and attached them with a velcro strap to her crutch handles.

We brought them to her therapy center to see if other crutch users liked them. There were only two other kids there who were able to try them; we'd like a bigger sample size. Both users were much bigger than Elena. They both really liked the feeling of the grip between the thumb and forefinger, but didn't like the rest of the mold b/c it was too small (E's mold edges around her palm, and this was uncomfortable for the bigger kids). We compared the 3D printed grip to different grips that were commercially available (both at the therapy center and at the Science Fair). The grips tested were Elena's own: gel wraps (a cushy, large handle cover that E doesn't like b/c they slip and they get sweaty) and neoprene sleeves (thin, slight cushion; slippery when sweaty). E prefers her plain handles over both of these.

(As an aside, this entire project--making molds, manipulating files, putting together the poster and scrapbook was no joke. It's like...executive function on steroids. If your kid has issues with this, I cannot stress enough....START EARLY!)

Presenting: E's Science Fair Debut!

Customize Your Gait

I like Elena's project name. Her hand placement and comfort does affect how she walks, so I think it's a fitting title.

Presenting at her first Science Fair

On the table is a scrapbook that details how the grips were made/scanned, and how the files were manipulated. There are also different versions of the printed grips (in blue plastic).

Here are a few page excerpts:

Notes from 3D Builder

Final Files and the prototype printed models

We brought old crutches and put different grips on each handle, allowing visitors to try out the grips and vote.

Which handgrip is your favorite?

Plain Handle
Gel Wrap
Neoprene Sleeve
3D printed

Elena's project was entered in the Demonstration Category. She did a great job explaining her work to the judges and the public. One judge gave her future access to a 3D scanner, and a 3D printer (with different filaments), and said she should enter the regional fair next year! We plan on trying this.

Want to help us?

We will be uploading these 3D files to Thingiverse, a database that has 3D files for use to modify and print. If you have access to a 3D printer, you can use our file (or our future files) and try it yourself! We'd love to hear about your experiences.

She did not win, but got an honorable mention in her category. We are very proud of her!

FYI: Elena prefers these grips to her plain handles, and has been wearing them since the week before the Science Fair. She's making a list of things to tweak for next time.

**this post will be updated once our files are uploaded to Thingiverse. Check for future posts under the keyword "crutch grips"

Wednesday, March 22, 2017

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).

Wednesday, February 22, 2017

Long Overdue Post: GERMANY!

So, in September of 2016 we went to Germany (and Austria).

We traveled overseas because my sister was running the Berlin Marathon. We decided we would make a family trip out of it. We had some practice traveling with the kids during 2016 (it was a HUGE travel year--by car, train, plane, and ship) so we had an idea of how we would plan it (key note is always bring the wheelchair!).

I'm working from memory here, so I'll do my best. We took the overseas flight from DC to Frankfurt; the kids had a half day at school (trying to tire them out) and we hoped they would sleep on the plane. Vivian got a little rest; Elena got sick (after a significant amount of turbulence). I think that overnight flights are just hard if the kids are not great travel sleepers, which ours are not (nor am I). The flight staff and the other passengers were very nice.

Berlin Cafe View

Bike Pretzel Vendor!

We hopped on the train to Berlin and walked to our lodging (we picked a small apartment that had an elevator). I love the bike lanes, public transport (buses, underground, etc.) and the people were friendly. We walked and used the subway to see my sister on the marathon course. The weather was lovely, and we enjoyed seeing the city, even if it was only for a short while.

Such a beautiful day

Elena and Vivian both shared the chair--with E riding as often as she liked (which was often, as she was saving her energy to get out and run, or dance in the square, or try to walk along fountains, or look over the canal, etc.).


Boat Parade!

The marathon cheering section was loud, boisterous, entertaining, and supportive. It was wonderful to be a part of it. The kids enjoyed the runners, the costumes, the music, the monuments, the parks in the city (we found a few to check out) and did their share of cheering and searching for Kate as she ran.


We were only in Berlin for two days; after the race, my parents and sister parted ways with us. They headed on a guided European tour, and we headed to our next destination: Munich.

We took the train from Berlin to Munich where Oktoberfest was in full swing. We decided to just see how far it was with a walk from our hotel...

A bit far of a walk for someone.

The next day, we headed out in our Oktoberfest best. Jason took the kids to the Flea Circus (I opted out: YUCK) and then we headed to the tents. This was "Family Day", which, I found out later, was pretty tame compared to any other time, including what I refer to as Family Day: Nights.

Flea Circus


I don't even like beer. But this was pretty good.

Just for show.

The only reason I know anything at all about not Family Day hours is because I managed to lose my phone at Oktoberfest. Needless to say, this is such a common occurrence that there is a specific protocol to recover one's phone, and it takes a minimum of 24 hours. We were leaving the country before that time allotment, but I tried. So I managed to bring down an otherwise fantastic day. (My parents and sister were traveling through Munich a few days later, and actually RETRIEVED my phone, with the amazing help of their guide! I could not believe it. SAINTS! I got it back two weeks later, after my parents returned from their trip!)

Beautiful Day in the Garden

Strolling through the park? Is this normal over there?

There is someone playing a white baby grand piano in the dome.

We left Munich the next day and headed to Austria. Along the way we stopped at Zugspitz. We took the cable car (scary and exciting) all the way to the top. It was great!

Just a little nervous


Tandem Sledging (that's me and E)

Girls with a View

We also stopped in a lovely town (I forgot the name) b/c it looked cute and interesting. Cobblestone is really not comfortable in a wheelchair, though.

Such a cute place to stop

Our stay in Austria was the longest at three days. The weather could NOT have been better! I even went on bike ride (on loan from our AMAZING hotel).

Lock Bridge

We loved exploring the city. There was music everywhere, street vendors, parades, and so much to see. We went to Saltzburg Castle, and stayed up late for a Mozart dinner (where we eat and are entertained by live music and singers--what a treat!).


Some sort of parade




Cannon view

The castle was expansive and we had a little difficulty navigating. Well, not so much navigating as much as doing it without holding up traffic. It's not exactly wheelchair accessible (we brought it but left it at the cog train).

Happened on a fashion show in the street. I APPROVE.

Our last day we were sad to leave, but missed home. Everything was so beautiful and fun (except losing the phone part--but like I said, it worked out). I really wish I spoke German; by the time we left I had just started figuring out how words are put together. I should have prepared better for that--next time!

Our trip back was long but uneventful. The kids were great travelers! They love exploring, and we love exploring with them. The lessons from this one: bring the chair, bring the crutches, make sure everyone uses the bathroom, and keep valuables in a bag/satchel/backpack/purse, secured (everyone knows that, but I made some changes for our next trip), always bring water.

Danke Schön, Germany and Austria!