Wednesday, August 2, 2017

Beach 2017

We had an awesome vacation this year at the Beach! We drove down a day early, to try to beat the weekend traffic. This means we had time to kill before we could get into the beach house, so we went mini-golfing.

In the past, this has been disastrous. Elena typically has a lot of trouble tripping over low obstacles, has had difficulty using a putter, and she wilts in the sweltering heat. This year, she rocked it! The only way we helped her was to carry/hand her a crutch as needed, or give her a hand for stability. She was patient and focused. All of us got a hole in one somewhere on the course!

We stayed in two different beach houses this year. One, on the beach, and the other two blocks away. The house with direct access is great for Elena, as she can get to the beach by herself. She has to be careful with her beach crutches going down stairs (typically I hold them, just to be safe, but she can do it without me) and needs to wear her water shoes so she doesn't burn her feet on the hot deep sand. She can go down to the beach without her crutches if the tide is high (or if she has a lot of energy to make it down to low tide). When we stayed in the house off the beach, we rented a golf cart. SO MUCH EASIER than trying to take the car, piggybacking, walking, or trying to use a wagon. If you are wondering if it's worth renting a golf cart, the answer is YES. I know it was only 1-2 blocks for us, but having the golf cart was the difference between a great vacation and one where transporting tired/wet/spastic/heavy kids (and equipment) would have made it much less enjoyable. Honestly, it made staying off the beach and on the beach basically equivalent.

Down the (public) beach access (when we stayed off the beach)

E and Viv playing in the surf. Most of the time she left her crutches just out of the surf or just walked from our chairs.

Vivian showing how small she is: "I can fit in a bucket"

We were joined by our friends the S family, who also have a 12-yr old girl. Elena and A had a lot to talk about, including "how mean our moms are". The winner of the "Meanest Mom in the World" award was me. Hmm.

Surfin' J!

Every day we spent a long time on the beach (except maybe one, for a sun break). We played with friends as we relaxed in the shade, or played in the sand, or swam in the water. Elena had a few firsts this year; she was able to walk past the surf, towing a boogie board, and ride in on a wave! Some days she had help, some days she did it on her own. Vivian has been pretty independent on the beach for a few years now--the only thing she has issues with are getting pinched by crabs and doesn't tolerate sea lice, which were around quite a bit this year.

Meanest Mom in the World towing kids upcurrent

Towing so they can "ride a wave at the same time". #tiredmom


Both kids love the "whoosh waves", where you just play in the deeper waves. If the mix of water depth (deep enough for Elena to be bouyant to stand), wave height (not too big), and current (not too strong) was just right, Elena could get out and play without help (with an adult close by in the water). Towing and throwing kids around in the waves is easier this year as my knee is almost recovered, but both Elena and Vivian are so much larger and heavier now, I'm not sure how much longer I can do it.

Jumpin' and whooshin'

Supervising (more hands-off this year!)

Strong Waves. Hands on.

Wave riding with Mom. This is my "hope we don't get rolled" face.

Beach Cousins! HOW CUTE!

Elena rode waves best on a raft, rather than a boogie board. She could carry a boogie board if the wind wasn't so hard, but she didn't like it when her legs would drag in shallow sand (and it took a long time to stand up as the waves hit). She couldn't carry the raft into the waves, but had a better time controlling it once she started riding.


Rafting, Grandpa edition

Viv loved the inner tube. E, not so much.

What a great time with family and friends! It's so great to see how much progress the kids have made at the beach--especially Elena. Activities on sand, in water, were much more independent this year. The kids tolerated sun, heat, and the occasional sting very well. Aunt Kate won the Sorry! tournament AGAIN, with 12-yr old A coming in as the runner-up. The Best Beach find was a pufferfish, and best Beach Beverage was probably Jason's Mai Tais. Most Successful Surfer was Jason, and Vivian caught the most fish. Both Vivian, Elena, and cousin G made friends on the beach.

Huge thanks to the S family for joining us, and to Grandma and Grandpa for bringing the beach gear!

Family playing "surprise wave"

Recap: Swim Team

The Swim Team Season just wrapped up, but it officially begun at the tail end of May.

Our swim team is fantastic (this is our second year). The Head Coach Eric stresses improvement and sportsmanship/team spirit over anything else. He has Assistant Coaches (five of them, either high school or college age) who are wonderful, and a few Junior Coaches who are middle school age (more like helpers; this is a little odd, b/c E is the same age, but it's fine.) Practices while school is in session are in the evenings (we typically don't start practicing until school is over, it's too hard to fit in for us) and once summer starts, it's 8 am every weekday except Thursdays.

Elena and Vivian practice at the same time (for now). Viv practices with her age/skill group (mid/fast 8 year olds), and Elena practices with the inexperienced 8-and-unders. E would like to practice with her own age group, but she would absolutely clog up the lane (and could possibly get hurt) because every other swimmer in the crowded pool (all lanes) is 4x faster than she swims, and has more endurance. Elena knows this, and has a pretty good attitude about it. She acknowledges that she is well-challenged practicing with the youngest swimmers, and she has the opportunity to get more individual instruction time. It's hard on me sometimes b/c E isn't as independent without her shoes and braces, but honestly, she's really improved on her poolside mobility. For practice, she wears her water shoes (I like this type) and she can walk well with crutches and can take steps (while wet or dry) without. She enters the pool by the steps (with rail) and takes off her water shoes (leaves them there) and gets in to swim. Reverse on the way out. If she's cold, she needs assistance--but that's typically only at the beginning of the swim season. And, while she doesn't do it at practice, she can now jump in the pool safely from the side edge (one hand on a rail or ladder)!

Elena used to swim only two events; freestyle and backstroke. Her backstroke is seriously slow, and she doesn't love it. Her freestyle has really improved! She is stronger now, and can kick (it's inefficient for propulsion, but can keep her from sinking) and can take breaths on either side during her stroke. She used to curl her head around while pulling hard and fast--imagine her making a ) or ( with her body at every stroke--which ended up wasting a lot of energy, but now she is much straighter in the water. Her goal was to get her 50 free under 2 minutes (her home pool is a yard pool, so that's our reference measurement). She also wanted to get a legal breaststroke, which I thought might be hard if her feet "flip in" (she doesn't have great ankle strength/awareness to remedy this) but her feet/spasticity happen to work with breaststroke--so this goal was in reach.

Meets are on Wednesday nights, and the kids swim 2-4 events (Vivian usually swims more events b/c she swims on a relay team). I am allowed by her lane with the timers, as Elena can't get out on the side of the pool without a ladder (it's hard, but I pull her up under her arms so she is sitting on the edge of the pool. She then swings her legs out, and I help her stand and walk away). Everyone is supportive, and cheering, and congratulating each other on their swims. It's wonderful.

We were gone for 2 weeks on summer vacation, but this year we were in town for Champs. It's where all the teams in the league (all 3 divisions, so there are 18 teams) compete. Vivian dove for the first time (off the block, which is pretty scary for her) and Elena reached both of her goals, with her 50-yd conversion time of 1:58 and the best 50m breaststroke of her life!! Vivian's freestyle relay won a fancy ribbon! Elena also won a special award for Perseverance, which is new this year. Amid all the 18 teams, she won for outstanding achievement. It was awesome!

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*.

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).


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!!

Tuesday, August 1, 2017

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.

Monday, July 31, 2017

Recap: Spring Break--Arizona!

I know it's been a while, but there has been so much (great) stuff going on that I haven't had the time or energy to write about it. So, here I am, trying to recap the important bits (4 months late!). Pretend it's April!

For Spring Break we headed with family out west--to Sedona, Arizona! The weather was beautiful, and both kids and adults enjoyed the natural beauty and fresh air. The kids love to travel, and they were pretty well behaved during the plane and long car trip.

The elevation change was noticeable in both temperature and vegetation.

We stopped on the way to Sedona from the airport to because of this incredible field of wildflowers!

Our big destination was the Grand Canyon. But before that, we took a few hikes! The sun was brutal; it's very easy to get a sunburn, even though the temperature can be cool. Elena's longest trek was 45 minutes--through a dry riverbed (read: ROCKS!), as we headed to the energy vortex at the end of the hike.

Great Attitude, Difficult Terrain

Sedona is truly beautiful. I wish we could have stayed longer, and that I could have gone longer on hikes. It was hard to do with a sore knee (still not fully recovered!) and kids who needed sun breaks--we'll have to go back!

Morning Hike with Viv and Grandpa

 We had a guided tour of the nearby scenery with Pink Jeep Tours. We headed out to a favorite watering hole for all sorts of animals. Although this area is heaven for hikers, we didn't do much walking--rocks and sun made short trips/motorized vehicles the best option for us.

I have to find sunglasses for Elena...

 On our drive to the Grand Canyon we stopped at a few overlooks. Truly breathtaking!

Family photo, grandparents edition!

Volcanic land looks like another planet

The Grand Canyon was spectacular! I had read that it was handicapped accessible, but I was pretty impressed with our experience. There was bus service all around the canyon, where you can get out and look. There are considerable crowds that wait for buses; handicapped people have priority access, but there may still be a wait. A lot of the viewing road is paved, with benches to sit and rest in the shade. There are air conditioned park centers along the canyon.

What a view!

Hermit's Rest

Canyon Girls

Once on a trail, we were on our own. Meaning, it's very possible to fall to one's death. I was nervous about my kids (Elena, especially) getting too close to an edge and tripping on a rock, so there was a lot of hand-holding and chastising for safety. Elena did hike part of the Bright Angel Trail (the most popular trail, the "easiest", and quite simply, terrifying for me as a parent). We went about 1/4 mile, down to the first arch. It was HARD--steep, rocky, without safety boundary, very crowded and sometimes only "two-people wide", and with people hiking with all their camping gear on their backs. (These people are near the end of a difficult 10-mile hike to the top, and still graciously giving us way as we try our best to navigate. THANK YOU SO MUCH HIKERS!)

E and Jason on the Bright Angel Trail

We have had a few experiences in National Parks, so much that we've been inspired to try to visit as many as we can. Thank you so much to the knowledgeable bus drivers, park staff, hikers, and especially our parents for helping make this trip so enjoyable!

Tuesday, May 16, 2017

The Bike Project: Beta prototype evaluation

There has been so much going on, it's hard to know where to start.

As I mentioned before, we've been traveling to JMU twice a week (an hour drive each way; Mondays and Saturdays, mostly) since September. Elena was invited to be the end user for a custom made bike, developed by the JMU second year engineering class. She took part in athletics (Overcoming Barriers programs, designed to keep underserved youth fit and active) in these two days per week (tennis and aquatics) and the engineers had access to her during this time to observe, measure, ask us questions and have E try things out. Each student team team was given a budget of $400. They had access to the bike lab, a welder, and a bike specialist for consultation and advice. They could purchase parts (or outsource work) as long as it was within their budget.

It is important for me to mention I've seen most of these groups present their ideas throughout the year--I've witnessed how their designs have evolved. I also saw one sample slide of the cost breakdown--if you factor in the time and labor cost, each human powered vehicle (HPV) cost around $30,000.

All of this work culminated into their final presentations on May 4th. 12 groups (approximately 8 students/group) presented their human powered vehicle models and Elena test rode them. The twelve models are shown below, in no particular order.

1. The A Team

Two wheeler with training wheels; pedal-forward; blunt saddle

This is a two-wheeled style with training wheels and a pedal-forward design (where the chain ring is situated more "in-front") to accommodate Elena's posture. In general, a pedal-forward design is not terribly efficient, but it is comfortable (think more of a beach-cruiser than a performance bicycle design). The top tube was lowered and reinforced; overall a purchased frame was bought and some joints changed and re-welded in the attempt to better fit her size and posture. They also changed the seat to give more room to maneuver while mounting and dismounting. This team's big idea was to incorporate a motor that would raise the training wheels off the ground once Elena reached a certain rpm. They did show a proof-of-concept idea, but never really got it to work on the bike in the given time frame.
Test Ride Result: Elena had a hard time balancing on this bike. She had to have people hold the bike while mounting. She thought the pedal-forward design felt weird (maybe it wasn't sized just right). She didn't seem to like the seat.

2. Team Joy Riders

Looks typical but isn't. Mounted bike without tipping

Riding well, confident when well-guarded

When I saw this bike during the alpha testing, my first reaction was "it looks like a normal bike...did they do anything?". The more I examined the bike, the more I saw how much work went into the design--one of this group's main goals was to make a special bike that looks like a typical one (really, these pictures don't give it justice). This has a completely custom frame, low step through reinforced with a second bar (small top tube added so E could step on it if needed), chain guard (E's heel often hits the chain), dual brakes (one lever that operates front and back brakes simultaneously), trigger shifter (like a pincher for changing gears up/down using the index finger and thumb), and well centered, large supportive training wheels. This bike fit Elena very well, looked just like a regular bike, and was lightweight and sturdy.
Test Ride Result: Elena test rode this bike better than I thought she would! She did not need help getting on the bike (but had close supervision). She looked great, and got some nice speed and braked well. Her feet did slide off the pedals a few times, but she got them back on. She enjoyed the ride, but was a bit out of her comfort zone with such a tall (more appropriately-sized) two-wheeler when turning. She was able to dismount by herself. I thought this bike was fantastic, if Elena was ready for a two-wheeled bike.

3. Team Cyclepaths

Not easy to get started; cumbersome and heavy.

When I saw this vehicle in the alpha phase I was not impressed. The team tried a different steering mechanism, adapted from a car. The brake is in an awkward position on the steering wheel.
It has a recumbent design that does not improve upon the current recumbent bike we own. It is too large to fit in our van, too heavy for me to lift, and too high for Elena to climb in easily. It was designed "for comfort" but the seat was too large for her and the steering wheel too close for her to get in and out of the seat. She did successfully ride it.

4. Team Making Waves

Side view; nice frame

Tipping early on in the test ride

This was a two-wheeled bike, similar to the Joy Rider model in that it had a custom low-step through frame and training wheels. This group tried to modify the pedal in a minimalist way to try to keep her feet on the pedal and in-line without caging her foot in; unfortunately, it just didn't work (Elena just put her foot on the outside of the pedal guard). The bike had a pressure twist gear shift and a rear brake lever, as well as a chain guard (the chain ring was the tallest part of the frame and Elena would step on the actual ring--not good). This team also tried to make a "parking brake" but I don't think it made it to the beta test.
Test Ride Result: The bike either wasn't well balanced on the training wheels (or they were too flimsy) or Elena leaned considerably during her test ride; she had to be caught several times by team members to keep her from falling. I liked their bike design but there wasn't enough support for Elena to be successful.

5. The Spokespeople

Starting off

Well balanced, smooth and fast

This HPV was fashioned from a youth beach cruiser bike (low-step through style, even if it wasn't super low E could still get her foot over the bar) and a trike adapter. I had never seen a trike adapter before this year; a typical trike adapter is quite wide, and can convert any bike to a trike for those who need extra balance. The Spokespeople fashioned their own trike adapter, making it smaller, lighter, with a narrower profile than those commercially available. They made a sort of "throttle brake" using a 3D printer where Elena could brake by cranking the throttle on her right (stronger) hand for more braking power (as a safety feature; has a thumb squeeze release) in addition to the coaster brakes. Elena rode this trike well in alpha testing, but had trouble with braking b/c if her feet slipped off the pedals she forgot how to brake (no coaster brake if your foot isn't on the pedal, and she wasn't used to the custom brake). With the beta model there was an angle issue with this bike frame and the custom trike adapter. This was b/c of the size of the actual bike; smaller bikes are missing another bolt-hole where the trike adapter typically attaches to larger bike frames (alpha testing they just tried with one bolt-hole; in order to pass safety inspection they had to use two, but had to alter the angle of attachment in order to fasten the trike adapter to the bike with two bolts).
Test Ride Result: Long story short, she rode the alpha model better than the beta b/c of this angle attachment problem. It could be fixed, but not in time for the beta presentation. This trike model overall was well done, but E didn't love the brakes. She felt very comfortable riding and operated everything independently.

6. Mumford and the Engineers

Note triangle frame in back for training wheels--strong, supportive...and heavy. Low step through frame was super easy for her to get on/off.

Going fast!

I'm not going to lie; before the alpha presentation I loved this bike. It was stable, with the heavy-duty training wheels (attached by custom framework). This team measured Elena everywhere, and really responded to almost everything I wanted--independent operation with the intention of Elena riding a two-wheeler someday (teachable design). The bike fit her well. In alpha testing it was the only bike she rode up a (tiny) hill and was able to change gears! The handlebars are a little small. The stepthrough is really low and the HPV is easy for her to mount. The training wheels are (supposed to be) easy to get off so it fits on a normal bike rack (we have a Yakima rack, where the bike sits on the bottom and secured over the two wheels). The main issues are it is HEAVY (between 60-70 lbs; I realized later that lifting a bike 40 lbs into the car was seriously difficult) and it seems like it won't grow with her well (fits her now, not sure how well it will in a year or two--but that's really an issue with any bike, right?).  Most of the weight is the frame (sure, you have an extra wheel you're not really using with the training wheels on--but it's the training wheel frame that's the super heavy part). Even if E could use a low gear, she still would have to move that weight as she pedaled...I was worried she would run out of energy.
Test Ride Result: Independent, smooth operation. Got some speed and braked well.  Clunky pedals.


Presentation photo

Successful mount (close guarding)

Taking off!

YOU GUYS this bike was super cool! It's very two-wheeler-looking, with the (very) narrow custom trike rear frame. The rear wheels are synched with their individual drive trains (that took a lot of problem-solving) so if the user happens to lean and if one wheel comes off the ground, the one ON the ground can still propel the bike. Hand brake operates on the front wheel (maybe there was a plan for back brakes?). I can't remember if the gear shifts were operational at beta testing (Elena never used any shifters at beta testing).  The step through wasn't super low, but E could mount it. The bike was longer than normal, but looked seriously sleek. They also spent a lot of time on a great idea for an adaptive pedal (it would try to keep her heel in line but had a spring swivel to accomodate her femoral/tibial anteversion), but didn't have a usable model by beta time.
Test Ride Result: I would have LOVED to keep this bike...but I wasn't sure it would be successful. During the short, flat, indoor test ride, E did well--I don't think they held the bike while she mounted it, but they were *really close*. She did tip and have to be caught during the straight ride--she was way down the hallway during the turn, and I couldn't really see if her guard team helped her (most likely). Her feet did fall off the pedals--this makes her very nervous, it changes her posture so she looks down and isn't focused on balancing and going forward. Once I assured her they wouldn't let her fall, she put some power into it and finished strong. My very strong opinion is this is a fabulous bike for someone who had previous success with a two wheeler and needs a little extra balance. She did have stabilization help dismounting.

8. Team 2 Chainz

Easy ride!

Nice speed and stoppage

This HPV is a trike model, with a small front wheel, custom mid frame, and rear bike converted to a tricycle. It's like a bike-to-trike conversion without the extra weight of the trike adapter, and a nice narrow profile. The team spent a lot of time trying to work out an adaptive pedal, but ended up scrapping it. The trike had a pedal-forward position, and in this case it worked really well. Trigger shifter and hand brake (rear). This trike is lightweight, fits her very well, but I didn't like the small front wheel and didn't think it would grow with her very long. The geometry of the trike is such that the neck and seat post aren't parallel, which can be problematic when extending them as E grows.
Test Ride Result: Elena rode the heck of out this one! She had no issues mounting/dismounting, her posture was great, and she had a lot of confidence, rode fast and braked well (it was her last bike, so she'd had the most practice).

9. Team Notorious ENG

Presentation photo


This team made a huge mistake in the beginning of the project...they ordered the wrong size steel pipe. They didn't have enough money left to afford changing their model, so they made their HPV with what they had. With a great attitude, they encouraged a smooth ride (b/c they had a huge comfy seat) and a very stable structure. Obviously this bike is too large and heavy, didn't size well for Elena, and the handlebars just didn't work well.
Test Ride Result: Elena needed serious padding behind her in order for her to reach the pedals. The seat was adjustable but not without a wrench. She couldn't reach the pedals well, her feet kept falling off, and ended up propelling the bike with one leg by half cranking around the large gear. Needed help getting on and off b/c of the height and size. Miss.

10. Team Systematic 8

Jogging to keep pace!

This bike was constructed from an adult trike (back end) and a custom mid/front frame. Low step-through, currently no gears, hand brake (front). Adjustable bar ends for hand placement options. Rear basket over the trike end, complete with crutch holsters. This was the only group that placed a high value on Elena biking somewhere to do something else (play at a friends' house?) and being able to independently ambulate. We rode this bike a lot during initial testing, she was very independent, even able to get her crutches in/out of the minimalist holders. She loved the bar ends; it took some effort, but we found a position that really worked for her; unfortunately the hand brake doesn't work well when situated on the bar end in that position (she can switch hand placement to brake, though). The beta model didn't include the bar ends.This was also the only HPV I tried to get in the van; I realized that without a cross bar (removed for low step-through) I didn't have any grasp point for the front end of the trike; this made it really hard to lift. This HPV weighs approximately 40 pounds.
Test Ride result: Elena rode this beautifully. No issues mounting/dismounting, nicely sized, very stable.

11. Team Wheelmen

Regular trike adapter in back

Going fast!

Despite not spending much face time with this team, this bike was sized very well. They took a regular bike, chopped in in half, made a custom mid-frame and used a standard trike adapter. E's posture looked great, the trike looked like it fit her and had room to grow. Low step through (reinforced with a second bar), dual hand brakes, trigger shifter. Gear ring is higher than the step through, so it would need a chain guard to protect it from being stepped on while E mounts/dismounts.
Test Ride Result: E had no trouble mounting or dismounting. Got some good speed, braked well. She looked confident and like she was having a lot of fun. I think her feet stayed on the pedals--quite frankly I'm not sure, b/c she rode away so quickly I don't remember seeing any issues.

12. Team MadE to Last

Easy ride

This trike has a reverse orientation; custom framing with two wheels in front, one in back. Very stable. Dual front brakes (operated by one hand), rear brake on opposite handle. Didn't try the gear shift (click shifter). Well sized. Two wheels in the front in general isn't preferred b/c of large turning radius (not noticeable during any testing, though). Wider handlebars, mimics a cruiser-style bike. Front looks boxy; frame is heavy.
Test Ride Result: Elena liked this bike. The two wheels in the front meant that she could really lean into the trike while mounting or dismounting (provided she is holding the hand brake so it doesn't roll). She was very stable and confident. I don't think her feet slipped (if they did, she was quick to get back on the pedals). She rode at a cruising pace, and braked well.


Then came the hard part...choosing one (or parts of one to make a FrankenHPV). Initially, Elena wasn't as interested in a trike model b/c she thought it looked too toddler-esque. After riding, there was no question she was more confident and more likely to ride a three-wheeler than a bicycle with small training wheels. E preferred a trike-style bike. We decided to pick features from the HPVs we liked to make our dream machine!

The instructors took E and I to the bike lab to discuss what we wanted in our final design. Elena was awestruck going in there; it was practically an Elena shrine, every group having a poster of Elena to motivate them, complete with pictures, slogans, issues, goals, sketches, etc. all over the walls. There were bike parts everywhere along with the 12 prototype models.

E's final HPV will be re/constructed and hopefully be ready by the end of the summer. We'll use the Team Wheelmen frame (slight modifications as needed), and the Spokespeople mini trike adapter (as E grows, she can find an off-the-shelf bike with a low step through and we can switch out the back wheel). We'll take the crank arms from team MadE to Last (they have the shortest arm, which means the pedal stroke is tiny and her feet are less likely to come off the pedals--sort of mimics the pedal forward model); they also have another attachment hole that so we can move the pedals as E grows), alter the basket with crutch holders from Team Systematic 8 to fit the smaller trike adapter and use the bar ends for hand placement options. It will have 3-5 gears (very low gear for hills) with a trigger shifter and front and back hand brakes. The bike will be painted in E's choice of color, likely pink and green.

Using this frame from Team Wheelmen

This custom trike adapter (smaller, lighter) from the Spokespeople

This is the "pedal-forward" alignment shown by Team 2 Chainz--we'll use the next picture's pedal to try to mimic some of the advantages of this shown style

This crank arm from MadE to Last has two bolt-holes to grow into (currently on the one that's the shortest, makes the pedal stroke small, which Elena likes)

Shrink up this basket from the Systematic 8 to fit onto the smaller trike adapter; keep the crutch holders (bar end is in the basket, we'll take those too)

This experience has been amazing in every way. The time and effort spent by these students is simply awe-inspiring! Being chosen for this project opens up new possibilities for Elena, and helped show us what goes into a huge effort like this. The students were so encouraging, energetic, motivated, inventive, and kind; I can't thank them enough. Special thank yous to the OCB staff and Dr. Tom Moran and Julia (our coordinator) for electing our family and helping things run smoothly. To Dr. Robert Nagel, thank you for inviting me to presentations/classes and relaying my thoughts to the students. Thank you to Drs. Kyle Gipson, Brent Cunningham, and Callie Miller for their engineering instruction and guidance this year. And thanks to Les Welch for his patience and consultation.

We are all so excited for the finished product! THANK YOU!