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The Magical Volunteer Fairy Visited Us This Week
You’ve read half a dozen posts about bike camp over the past few months and have probably watched the video of James riding tandem with Jake-the-bike-technician. If I wasn’t so exhausted from hauling the kids back and forth to Hoboken every day I would’ve given you a blow by blow each night of how camp was going because there were definitely stories to tell. I actually started a couple of posts to vent a few times but am glad now that I waited until the end of the camp.
Because now I’m at the blissful part of the week – you know, the part where we have emerged at the other end unscathed (minus my sore back and James’s head-to-toe bruises) and it is the sheer relief that washes away any stress and anxiety I was feeling during the long adventure. Now I can look back on the week knowing that the things I was worried about worked themselves out and I can seem wise and introspective as I tell you of the lessons we learned at bike camp this week.
Basically, the bike camp is run by two people from the Lose The Training Wheels program, a coordinator and a bike technician. They show up with the special bikes and special skills to make it all happen, and apparently spend each week in a different city running a bike camp. “Running bike camp” involves tailoring roller bikes (special bikes created just for the camp) to each special needs child’s ability, deciding when each child is ready to try a real two-wheel bike, and directing the volunteers working with each child during the week. In the meantime, a parent or organization, in this case Teresa Howard and the Hoboken Family Alliance plans out the camp location and finds sponsors, volunteers, space, parking, hotels, funding, etc. – from what I understand it can take 6-9 months to organize the whole thing. A huge endeavor and one that is very appreciated by all.
I want to make sure I acknowledge how much work goes into the planning process because I am about to complain about something, fully realizing that many people put a lot of effort into making it all happen but also having a pretty big interest myself in having it all planned well (see Comment section for follow up here).
In my mind, James needed an energetic person working with him to help him find confidence, feel comfortable, focus on the task at hand while also distracting him enough to not freak out about riding the bike. Not asking too much, right? And as it goes every time I have high expectations…
Before wishing for the perfect volunteer, I guess I should’ve wished for a volunteer, period. My biggest single complaint about the whole week was the complete lack of volunteers for the first two days. Monday and Tuesday there were so few volunteers that they had to ask random parents and caretakers to step in and help out. This would’ve been okay, except for 1) I absolutely could not help out with 2 babies in tow and 2) because the parents had arrived unprepared to volunteer, many of them were dressed inappropriately to be jogging behind a bike for 2 hours (dress shoes, flip flops, skirts) and/or untrained to appropriately interact with the child’s particular special needs.
The volunteers on Monday and Tuesday were truly, sincerely, really great, nice people (most volunteers have to be nice to volunteer!). But the first two days involved parents walking quietly and pleasantly behind James as he fell off of the bike 10,000 times – no “Come on, James!” or “You can do it, buddy!” or “Looking good!” or even any tips on how to pedal faster or take turns better. That was all me and my mom, cheering supportively (“Ride like Voldemort is chasing you!” and “Pedal pedal pedal!” and “go James go” from my 2 yr old) from the sidelines while entertaining two toddlers in 10 square feet of free space.
James wore a very serious, almost pained expression on his face the entire time and clenched the handlebar as if his life depended on it. And it kind of did, because he must have wiped out a dozen times in the first half hour. Nobody else fell off of the roller bikes more than once or twice the entire week, but as you know by now James is a square peg in a round world. My new expectation/wish changed into a volunteer who was strong enough to catch James before he hit the ground (thankfully this was granted). I could tell that the bike camp coordinator was extremely surprised and disappointed by the lack of help, and she commented several times that she had never seen so few volunteers in all of the camps she had run. Boo!
Wednesday went a little better – there were a few more volunteers, and James scored a younger, more energetic guy who walked around the track with him chatting about Star Wars for the first five minutes, but by 15 minutes into the session James had another pleasant (very nice, friendly, good-natured, etc. etc.) volunteer walking him quietly around the track while he fumbled along trying to ride the bike. Wednesday several of the children started trying real two-wheel bikes (not James). James officially did not wipe out for the first day, so at least there were less injuries.
On Thursday, every single last special needs child went outside to ride real two-wheel bikes on the track. Everyone except for James, who now had the entire gym to himself. I felt so bad for him – we hadn’t realized that the roller bikes weren’t allowed outside and had told him he would be riding on the track with everyone else before we got there. I also didn’t realize that we had actually struck gold.
In my last post about bike camp you got to see James riding a tandem bike with Jake-the-bike-technician. Well here is Brian-the-super-amazing-volunteer, running after James on a roller bike this past Thursday. The fact that Brian is running and not casually walking behind James shows obvious progress, not to mention the fact that James is riding the roller bike alone! The not-so-obvious but equally amazing achievement is that James moved from a 3 roller to a 5 roller (there are 8 levels to the roller bikes, level 8 being a two wheel bike).
James and Brian
But let me back up from James’s progress and focus on Brian-the-super-amazing-volunteer (aka Brian Wagner) for a minute. Right off the bat, Brian’s energy was apparent. He introduced himself and told us about his involvement with Bike Hoboken, so we knew he was passionate about biking in general. He started around the track chatting enthusiastically with James and within minutes had James riding around the track faster than he had been all week. I could tell that James was not only more comfortable with Brian, but that Brian knew the secret to James’s success – to distract James from worrying about every move he made on the bike.
Brian encouraging James on the roller bike.
Brian ran behind James giving helpful tips about keeping his head up, which way to lean when turning, and lots and lots of compliments and encouragement for the smallest of victories. He also had no problem being silly and playful with James, something we had not yet seen but that had been sorely needed all week (sorely might be a bad word for it!) Brian had no trouble giving James a little push to get him back up to speed, and that was all it took sometimes. He acted interested in James’s running monologue and the random comments James likes to make. He was just the right amount of concerned but practical if James got nervous or started to fall.
Maybe James was just getting better on the bike by Thursday, you might be thinking. Maybe. But Brian took a break later in the session on Thursday and Jake-the-bike-technician stepped in for a few minutes. Jake is a very nice, very quiet guy. Without Brian, James’s pace slowed down considerably and without the constant conversation and encouragement he got a serious, concerned look on his face again. And then Brian came back, gave James a little push to get him up to speed and they were off!
Friday Brian was back, and without three more paragraphs about how awesome he still was I’ll skip to the part where he got James onto a real two-wheel bike!!!
James on two-wheel for the first time ever
With Brian’s help, James was able to successfully ride the bike around the gym and graduated to the outdoor track just in time for the end of bike camp!
James and Brian on outside track
I cannot emphasize how unlikely this feat seemed up until Thursday afternoon, or what a miracle it is that James got onto a regular bicycle. At the bike camp coordinator’s recommendation, I had been researching adult trikes earlier in the week because James was having so much more trouble than the other kids. But by the end of the week we all agreed that the two-wheel bike was the best route to go. Hooray for James (and hooray for less expensive bikes)!!
Brian was the obvious hero of the story, but I want to mention that there were many other volunteers who made the week even possible for our family. Two days before bike camp started my general plan was to just get through the week as best as I could, mostly on my own, trekking round trip to Hoboken every day. I mentally braced myself for the worst. Then my mom came down for the first two days to help me manage the babies at camp. On Wednesday my dear friend Jaime offered to watch my 2 yr old on so I wouldn’t have to take both babies alone. My sister came down on Thursday to help me again and on Friday my ex and his wife were incredibly helpful with all 3 kids.
See the comments section for the many other fantastic volunteers who worked with James and donated their time and effort to the bike camp as well.
Volunteers are small miracles. There is no obvious reason for them to do what they do but the effect they have and difference they make to others is enormous. What had the potential to be the most difficult week of the summer turned into a manageable time for me and a wild success for James, and it is all thanks to the wonderful volunteers who continue to pop into our life.
Thank you Volunteer Fairy, wherever you are!
World's Best Biker
Tonight’s Feature: Bike Camp Madness, Starring James, Brought To You By Jake-the-bike-technician
I just wanted to share a very special moment in an otherwise challenging week at bike camp.
Amy and Jake (the one sitting behind James) have been supportive and encouraging, and the camp has been good so far aside from a shortage of much-needed volunteers. But, it is hard not to feel disappointed and frustrated for James, who as usual, works ever-so-much-harder than everyone else (including other special needs kids in this case) to try to do something most of us take for granted. He continues to fall off of the adaptive bike (a roller bike) and he continues to get up, brush himself off and get back on. It’s painful and inspiring to watch at the same time.
My personal feeling is that James has paid for the privilege of riding the damned two-wheel bike in perseverance alone, not to mention the bruises. Will he ever get a break?
But the week’s not over yet and if he hasn’t given up, well neither have I.
Go James go!
All About Bikes (For Special Needs Kids, Of Course)
In the spirit of James starting Special Needs Bike Camp next week (in Hoboken – email me if you want more info!), I thought I would share an article my mom sent me about two amazing volunteers in the Chicago area who build adaptive bikes for special needs children and give them away:
pioneers featured in people magazine
Pioneers Gordon and Connie Hankins, leaders of the New Outlook Pioneers Therapy Oriented Tricycle (“TOT”) Trike Program in Naperville, Illinois, are featured in People Magazine’s “Heroes Among Us” in the July 4th edition of People which hit newsstands on June 23, 2011.
The New Outlook Pioneers Crossroads Chapter has been making and donating TOT Trikes since 1986 and Gordon and Connie have been leading the project for the past several years. The trikes are assembled by an all-volunteer project team and are provided free of charge. The Crossroads Chapter donates approximately 80 trikes per year, which translates into a $400,000 value since the beginning of the program, as it costs the chapter about $200 to build each trike.
Learn more about the TOT Trike Program and get information on how to order a trike.
Make a gift in support of this and other Pioneers projects and programs.
This is just one of many Pioneers stories being shared with international media as we celebrate our 100 years of grass-roots service to our communities.
For all the latest Pioneers information, check the website often, register your email to received the Centennial Times e-newsletter, follow the Centennial blog and the Pioneers page on Facebook.
If you have a great Pioneers project story to tell, we encourage you to share it. It may just be the next international media feature! Please send your stories to pioneersprojects@pioneersvolunteer.org. Be sure to include your name and complete contact information, including phone number and home and email address, along with a detailed summary of your program, including what makes it special or unique.
Therapy Oriented Tricycle (TOT Trikes) Make Mobility a Reality
The Pioneers TOT (Therapy Oriented Tricycle) Trike is a modified safe tricycle designed for children with special needs (ages 2½ to 7 years) to help improve their strength and enhance their physical therapies while allowing them the thrill of playing and interacting with other children. The TOT Trike is specially designed for children who have weak leg muscles, but are able to use the pedals.
The pedal-powered TOT Trike is available in 16”, 12” and 10” sizes.
Add-On Components:
• wider rear axel for stability and safety on the 16” trike
• metal back brace with Styrofoam back support and seatbelt
• foot holders on pedals with Velcro straps
• upright handle-bars (if regular horizontal ones are too restrictive – 12″ and 16″ trikes only)
A letter of recommendation from the child’s physical therapist is required before the TOT can be provided. Download the therapist’s recommendation form here.
The New Outlook Pioneers Crossroads Chapter has been making and donating the TOT Trikes since 1986. The trikes are assembled by an all-volunteer project team and are provided free of charge to the recipient. The Crossroads Chapter donates approximately 80 trikes per year which has resulted in a total contribution of over $400,000 since the inception of the program.
The TOT Trikes are donated to children mainly through local agencies associated with special needs children such as hospitals, schools, Easter Seals locations and other medical facilities. The trikes are delivered fully assembled and Pioneers make presentations upon request.
TOT Trikes can be ordered directly from the Crossroads Chapter. The Trikes are distributed locally and in the metropolitan Chicago area with no shipping charges. However, the chapter will ship anywhere in the world, with shipping charges being paid by the individual or group requesting the tricycle.
For additional information or to request a tricycle, please contact:
Gordon & Connie Hankins
Co-Chairmen, TOT Project
New Outlook Crossroads Chapter
Phone: 630-355-7211
Fax: 630-355-7211 (please call before faxing)
Cell: 630-841-4542
Email: ghankins99@aol.com
Just more proof that inspiration can be found even on the hottest of days!
Its as easy as riding a bike….. what?
Why is this a saying? It’s a particularly misleading one because it insinuates that anyone can do it. It made me buy James a red Power Rangers bicycle when he was 5 and add training wheels. And he could do it – surprise, I bet you didn’t think I would say that! He was slow-moving, but he rode that bike up and down the street in Columbus, OH, and even around the block when I was feeling extra patient. We had a Dairy Queen about 2 blocks away – ask James about riding his bike to Dairy Queen and he can tell you the whole tale including what he got off the menu, even though it was 5 years ago.
Then we moved to Virginia, and lived on a hill. Not a huge hill, but a hill big enough for a little bike to pick up speed. And James was not so little anymore, but the training wheels had not grown with him. When he got on his trusted steed, those training wheels got bent to hell, the bike tipped side to side, and it went somewhat faster than he expected. I’m sure you can see where this is headed. From that point on, Ryan and I fought the slow but inevitable slide into bike hell. I assure you our road was paved chock full of good intentions.
If anyone asked James if he could ride a bike, James would say, “Oh, yes, I can ride a bike. I have a red Power Rangers bike and I can ride all the way to Dairy Queen.” But at home, when it came time to ride the bike, James would get off at the first sign of a tilt, even if we were holding on. This evolved into full screaming wars on the bike while we shouted promises of “not dropping” James as he pedaled down the driveway. Then, he didn’t even want to get the bike out anymore. Then, we gave the bicycle away and moved to NYC.
Today, James seems very interested in learning how to ride a bike. We have healed enough from our past bike trauma and feel that we are ready to embark on this journey once again. These days James is 5 feet tall and 125 lb, so he will need an adult bike. I have been researching adult-sized training wheels to fit a standard bike and have had some success, though the training wheels for special needs people are $$$, running over $100 for the wheels alone. The ones that seem to be the “brand name” are Fat Wheels, is anyone familiar? I hate to start investing hundreds of dollars into something James might give up on in 5 minutes.
Then, as I was researching training wheels in the wee hours of the night, I stumbled across an organization call Lose the Training Wheels. Here is a snippet from their website, http://www.losethetrainingwheels.org:
The mission of Lose The Training Wheels™ is to teach individuals with disabilities to ride a conventional two wheel bicycle and become lifelong independent riders. This achievement, in turn, creates a gateway of opportunity, helping them gain assurance and self-reliance in many other aspects of their lives.
A Brief History of Lose The Training Wheels™
Our adapted bicycling program had its genesis in the more than 20 years of research of Dr. Richard E. Klein and his students at the University of Illinois at Urbana-Champaign. Richard retired from his academic career at the University of Illinois in 1998 and the first bike camp was held in 1999 in LaCrosse, WI. In the ensuring years, Dr. Klein and his wife, Marjorie, invested a significant portion of their lives in growing the program to three fleets of bikes and approximately 30 camps in 2006. Today Dr. Klein and Marjorie are principals in Rainbow Trainers, Inc.
In January 2007, a small group of parents, therapy professionals, and business leaders formed Lose The Training Wheels, Inc. as a not-for-profit organization which was recognized as a tax exempt public charity in June of 2008.
The Lose The Training Wheels™ bike program has grown from one camp and one fleet of bikes in 1999, to 50 camps across the U.S. and in Canada and five fleets of bikes in 2008. The impact of learning to ride a bicycle and our high level of success in helping individuals with disabilities accomplish this feat continues to drive demand for our camps and fuel our growth. We anticipate that over the next 5 years we will grow to more than 100 camps in at least 5 countries.
They do these workshops and camps all over the country, and the closest one to us is in Hoboken, NJ this July. I already emailed the contact from the camp and am anxiously awaiting her response, though I don’t supposed she is up at 3a.m. to answer my inquiry. I would also love to find an agency that would be interested in sponsoring a workshop here in the city. There is a whole bunch of info on sponsorship on their website, http://www.losethetrainingwheels.org.
Has anyone had any experience with this organization? They claim to have an 80% success rate. Does anyone have experience with the Fat Wheels or other tricks that worked when teaching your special needs child to ride a bike? Our main issues are low tone and high anxiety. I’d love to see a conversation about this in the comments section, and will also update this post once I hear back about the riding workshop this summer.
I would love to have some family bike rides this summer, even if they don’t stop at Dairy Queen.
The Foorce 
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