Wednesday, September 1, 2010

We Interrupt This Road Trip Diary For Some Very Exciting News!!

Sam has learned to ride his bike!!!!

This moment has been more than 4 years in the making. You have to know the whole story to really appreciate what you see in that video. We started with a tricycle like you do with most kids but Sam couldn't pedal, his feet just fell off the pedals and he had no strength to push on them. It was even one of the fancy ones with the push bar in the back. I remember thinking when I bought it that we probably wouldn't have to use that and he would just pedal off into the sunset. That was only a dream.

Someone suggested we try a Big Wheel because they are low to the ground and easier to pedal and Sam could start by pushing himself along with his feet. Sam sat on it but he never went anywhere. He only pushed off with his left side, his strong side and he wasn't strong enough to keep it straight or turn it. Another hope and dream dashed. Another item for the next rummage sale.

By this time Sam was getting bigger and we thought...or maybe dreamed...that what he needed was a two wheel bike with training wheels to better fit his frame. He was stronger and would surely be able to ride a bike now. But again we were wrong and Sam did not want to sit on the bike or even try to pedal. It seemed Sam's low tone and lack of balance became more pronounced with every new bike we tried. Sam quickly outgrew the bike without ever riding it on his own. We passed this bike on to a friend.

We tried the Buddy Bike which is a tandem bike that allows Sam to sit up front, we both pedal and I steer with the handle bars that wrap around to the back. This would help him feel more balanced, I could talk him through it. But...Sam seemed to only be able to pedal backwards and preferred to put his feet on the pegs and have you do all the work. I'm not sure if the heaviness I was feeling was from pedaling for two people or the thought that yet another idea/dream was for naught.

Grandma put Sam on her stationary bike thinking this would be the trick...and again Sam seemed to only pedal backwards. Bringing his right leg forward and up just didn't seem to be in the cards. Grandma worked harder and did hand over hand but without that input Sam still pedaled backwards.

I could have given up. I could have come to the realization that Sam was never going to ride a bike...this was way too much work and each disappointment hurt more and more. But...I couldn' heart wouldn't let me. If there is one thing I know about Sam it is that he is a fighter, he has had to be. He has had to fight to hear, to speak, to crawl, to walk, to run, to go up and down stairs, to swim and even to breathe. Those things we take for granted, those things that are not even a challenge to other children with Down syndrome have been a challenge for Sam. I was not going to give up...I will never give up on Sam...I just can't.

I bought an automatic pedaler, one you put your feet in stirrups on the pedals, turn it on and it turns your feet for you. I desperately hoped that this would help make the connection in the brain for him to learn to pedal forward.

I bought a set of fat wheel training wheels and had Jeff install them on now a 20" bike. The first time I put Sam on it, he fell off. I adjusted the seat height and pushed him on the bike so he could get comfortable, he didn't steer even after being verbally cued and drove off the driveway. I showed him how to use the hand brake, he pushed it but at the same time lost control of his steering and once again fell to the ground. I again begin to pray...and a renewed strength picked both he and I up to try again. I decide to take on the helmet issue. Since Sam is falling a lot I really feel he needs to wear his bike helmet and probably some elbow and knee pads but that might hamper his learning how to steer or pedal. The helmet is an issue because Sam has sensory issues regarding the touching of his face or head. He wears his baseball hat because he can hear but helmets along with winter hats, hair cuts and dental appointments are almost more than he can bear. At this point, I know I am doing battle and it is time to figure out who is the stronger opponent. After much yelling on Sam's part and gentle but firm insistence on my part, I get the helmet on his head and get him back on the bike. At this point it is 85 degrees out, for the next 1 1/2 hours I am running from one side of Sam's bike to the other pushing his foot up and over. I am drenched in sweat, my fingernails are broken off and my foot has been run over too many times to count. I'm now yelling "You can do this Sam...I know you can" "Come on push" "Sam push up and over" "COME ON, use your legs". Not knowing if child protection services have been called in by my neighbors or if I can continue this much longer I steer Sam back to our driveway. As he gets to the incline of the driveway and I get to my point of complete exhaustion and defeat Sam's bike begins to drift backwards. He suddenly presses down on the pedal to make it stop.

The "A HA" moment is upon us. He pushes on the pedal and goes forward on his own. He backslides a little again and then pushes harder this time making it over the top. The yelling of just a few moments ago becomes screams of "You got it, you're doing it, GO SAM GO" as tears of joy join the sweat dripping down my face. Sam pedals around the circle in our driveway, but not only does he pedal, he steers and uses the hand brake perfectly. I am sure I have just witnessed a miracle and I thank God for allowing me to be a part of it.

Sam continues to pedal his bike into the garage. His face is dripping with sweat...he takes his helmet off and with a smile from ear to ear he says "We did it Mom". I am again humbled by this very little boy who continues to teach me that "To accomplish great things we must not only act, but also dream; not only plan, but also believe." I am a believer.


  1. Awesome job Sam!!!! We just did our first "Lose the training wheels" camp this summer-it was great. I think my little one needs to get a little more strength behind her before she'll be completely independent. But she'll get there. :-)

    Great work Sam!

  2. I need to re- do my make-up now! What a wonderful story of perseverance and courage.

  3. Thank you for sharing this! I have tears in my eyes! I love that he wanted to ride through the puddle just like every other little boy! This encourages me with my little boy with DS. We are getting ready to start with a big wheel.

  4. Riding a bike - such a common thing for a kid to learn. My daughter is 12, has Downs and is deaf. It is a struggle to help her understand the whole idea of using the pedal, how you need to use your legs and feet together - ugh!! I am very happy for Sam. Great job to you both.

  5. You did it Sam!!! I cannot wait to show Meggie the video! Sue, we share in your excitement, keep dreaming!

  6. Sue, you work so hard! Yeah for both you and Sam.

    Jeanne S