The bicycle challenge…

So what kid doesn’t want to ride bikes with their friends and family? They all do right? Well Ethan isn’t any different which is the proverbial double-edged sword….

When he was about 8 we purchased a bike for him with training wheels. He was super excited and when we got it home he had to get on and try it. So, after putting all the safety pads and helmet to keep our special kiddo protected when he inevitably fell, we got him mounted up and started to help him go just like any parent does a first time bike rider.

I can’t tell you how happy I was to see him start to understand how pedaling worked even if he didn’t quite do it consistently, I was sure that would come with time and practice.

What I hadn’t anticipated came next… when getting bold enough to venture out of the driveway and onto the sidewalk, as soon as we got close to the mailbox he had to stop so he could stim over the numbers. It took a minute or so to get him focused back on the bike and off we went down the sidewalk.

After a very short period of pushing while trying to help him figure out pedaling we got to the next mailbox… time to stim again… basically rinse and repeat every time we got near a mailbox… (sigh)

Each time he tried to ride the bike it was the same thing. He could focus on what he was doing as long as he wasn’t anywhere near a mailbox. However pedaling was always came in surges. As he grew it quickly became apparent that even with a larger bike he was going to require training wheels which tends to be a scary venture because they simply are not made to support a full size bike with a rider larger than your average 5-7 year old. His bike was already becoming a safety issue. The way he sat on the bike was also and issue, he tended to slide off the seat and had problems getting on and off safely. He especially had issues whenever he stopped to stim and always needed to have support to keep him safe each time he stopped to stim over anything with letters or numbers.

Fast forward a couple of years and a vacation to Florida where we stumbled across a store that sold “recumbent trikes”. These trikes are not the style that look like a giant kids trike, these have seats that are more like low slung lawn or beach chairs. The position is reclined and they can even have the two wheels in the front with one wheel in back and are called “tadpoles”. Recumbent trikes with two wheels in back are known as “deltas”.

Tadpole trikes are much more nimble with smaller turning radius’ so we tried him on one of those first and after briefly sitting he starting stimming a lot. We think it was because he could see both front wheels spinning since they were to the sides of his legs near his knees, meaning they were in full view. Something about this actually bothered him and he got up and we couldn’t get him to sit on another one at all.

Delta’s were next, and something just clicked. He quickly started moving around the crowded store as much as he could, which was very limited but you could tell that there was something about the look on his face that told us this was the solution.

The store owner was there and after chatting for a few minutes let us take it on a bike path that ran behind the store and once Ethan hit the path, he very quickly figured out pedaling and I couldn’t walk beside him anymore. With no need to hold him at all because of being 100% supported by the trike, he was off.

We just started trying to work on braking when we finally had to leave, but this was definitely the solution we have been looking for, unfortunately the delta at the store was almost $6,000 (shock). Fortunately Ethan has been a very flexible kid with very few meltdown issues, and after some initial crying and stimming when we left things we okay about 10 minutes later, phew!

Fast forward a year and we mentioned to his physical therapist that we were really hoping to figure out a way to get a recumbent trike for Ethan and had found one that looked like it would be good for him but was still $2,000. She told us about AMBUCS.org Amtrykes and their wish list program.

Turns out that AMBUCS.org makes a variety of adaptive trikes under the Amtrykes brand name, including… a recumbent trike! And they provide them at cost for people who qualify for their wish list program. She filled out all the paperwork for us and after including our portions we sent it in and about 10 days later got a letter notifying us that Ethan was granted a spot on the wish list for the recumbent trike, insert happy dance 😀

While reviewing the details with their wish coordinator I mentioned my own disabilities and she told me that if my doctor filled out the paperwork, I’d qualify for the wish list also!

So now the goal has been reduced to just under $1100 for a trike that is very similar to the one we found for $2000. If we are able to get 2 that doubles to $2200, and then we have to get some sort of rack to transport them which tacks on another $600, so in a perfect world we need to get about $2800. After chatting with some friends about it and how we still had to figure out how raise the money for it, several of them pushed me to start one of those community funding campaigns on sites like GoFundMe.

After researching the various options we decided to use YouCaring.com

With the support of my friends and parents, in just over 10 days, we have gathered 60% of the goal for Ethan’s trike and 25% of the goal to get the car carrier and a trike for me too!

I really hated to put something out to ask for help, but the fact is with the significant cut to my income after going on disability almost 3 years ago, we just can’t afford this kind of thing for him ourselves and didn’t really have any other choice. The generosity of my friends has really touched me and I can’t wait to start posting pictures and videos of Ethan having a blast on the trike and racing in Special Olympics in the Spring.

Hopefully the YouCaring.com campaign will get enough donations that we can get Ethan’s trike in time for his birthday on November 21st 🙂

~~ Bill

 

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