Posted in Autism, Down syndrome

Blog #65~Tour De Nick

Blog #65~ Tour De Nick

Here’s how the scene sets up……Enter Nick into the Fox Valley Park District Recreation Center with bike helmet in hand walking appropriately down the corridor. He gives the queen wave (his signature hello to patrons passing by). Great start, yes! 🙂 We got there early, and waited in the viewing area.  Without warning, Nick suddenly hurled his helmet at the receptionist.  I threw my hand up trying to deflect it, but missed.  His helmet narrowly skims the side of her face.  This is shaping up to be a long week…. I Can Shine- Lose the Training Wheels Bike Camp… Hmmm, what the hell was I thinking?

I was thinking that after the success of his scuba experience that maybe I should try to expand his horizons.  Check the May 2013 archives to read about this in Blog #53~Scuba Diving, Really?   Click here and check it out:  https://nickspecialneeds.wordpress.com/2013/05/06/blog-53scuba-diving

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Had I been limiting my son’s potential due to his dual diagnosis of Down syndrome and autism?  It was time to try something new and bike camp seemed like a good plan to move him forward.

At the parent meeting the staff went explained of how the week would go. Approximately 80% of the individuals who participate in our iCan Bike programs ride a two-wheel bicycle independently by the end of our five-day programs. The remaining 20% of these individuals make tremendous progress towards this goal and leave our programs accompanied by parents and/or siblings trained as ‘spotters’ to pick up where we leave off!  The bikes used are lower so that the child’s feet can easily touch the ground upon stopping.  Roller wheels are put on the back to better aid in balance.  As the week progresses the wheels are changed out to wean the rider off and get them on two wheels.  For more information visit, http://icanshine.org.

Armed with a task strip of images we proceeded…..

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Day 1:

Nick entered the venue along with 7 other kids who have special needs.  Some were hesitant to get on the bike right away.  The volunteers managed to get the helmet on him, then Nick proceeded to do a stop, drop and plop on the ground.  After some coaxing he finally got up and sat  on his designated bike with roller wheels on the back.  Getting started pedaling was tough and he is unable to balance.  He couldn’t steer at all.  The bike began to shift back and forth across the tennis court like a metal ball bouncing off the bumpers inside a pin ball machine in slow motion.   I cringed… A turtle could have beaten him easily down the court.  He stopped often and I could see him pinching his cheeks (a sign that he is frustrated.) Through the glass I could tell he was cursing too.  I took off to buy him a Sprite to use as a reward each time he made a lap around the courts.  75 minutes each day for 5 days, I wasn’t sure this was going to work out.

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Day 2:

I pulled into the parking lot and Nick began to clap.  Whew that’s a good sign. 🙂 Nick accepted the helmet much better.  He was able to handle more laps around the tennis court going a bit faster and seemed to pinch his cheeks less. It was great to see him ride the tandem bike and stay in sync with the staff member behind him. Reward for the day, Taco Bell!  I am going to put 5 pounds on easily this week, ugghhh

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Day 3:

The staff announced that this is the most exciting day of the week.  “Today is launch day.”  🙂  “Many of the kids will be taking off on two wheels!”  Parents were encouraged to come in and cheer, take pictures and celebrate.  I got a lump in my throat seeing these kids take off with success. Pride was written across the smiles on their faces.  Nick was making improvements but still had trouble pushing the pedals.  He worked on the trainer with a goal to pedal ten times in a row.  The staff reported that he was able to balance better and was starting to steer and turn more on his own.  However, he would be a failure to launch.

Day 4:

This was move in day for his older brother, Hank who attends Northern Illinois University.

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Nick’s respite worker, Lara said he was up on two wheels with the spotters close at hand.  He had a good day and enjoyed lunch at McDonalds afterwards.

Day 5:

Nick started out on the trainer to work on pedaling technique.  He road the roller wheel bike, tandem bike and the 2 wheeler bike with a handle on the back.  I took a video of him on the 2 wheeler bike. He was so slow that the footage looked like a still frame picture.  Nick was the last remaining cyclist to head outside and the only one who didn’t launch on two wheels. The iCan Ride staff recommended we put him on a 24 inch cruiser bike with a handle attached to the back.  She felt he made progress balancing and turning and encouraged him to come back next year. The  Fox Valley Special Recreation Association coordinator  gathered the kids together for a group picture.  Each child was rewarded a special license to ride.

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I am glad that Nick had this experience.  My goals for the week:

  1. Give him something to do that was structured and physical.
  2. See if he could pedal so we could possibly look into getting a tandem bike.
  3. Wear him out so he wouldn’t drive me bonkers while he is out of school. 🙂

Nick made improvements and endured more each day, plus he didn’t have any meltdowns. Did he enjoy it as much as the scuba experience? No, but at least he tried something new and it was not an epic fail.  Will we do it again?  That depends on whether he pulls those bike camp icons out of his picture communication book and requests it.  You never know until you try…That’s what is in my noggin this week.

~Teresa

Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs

Blog #53~Scuba Diving, Really?

Blog #53~Scuba Diving, Really?

About a month ago I clicked the inbox to purge emails.  I spotted one from Nick’s Adapted Physical Education (APE) teacher. Subject:  Scuba diving…What the? I laughed picturing Nick strapped down with all that equipment on his back and around his face.  I can’t even get him to leave a hat on for more than thirty seconds.  I started to hit delete but something made me pause.  I skimmed the information and hit reply.  “I am not sure this is something that Nick could tolerate.  What do you think?”

His APE teacher, Meredith Jordan wrote back.  “I think we should give it a try! He really enjoys swimming and has no problem putting his head under water. He has also done an awesome job responding to directions given to him during class. It can’t hurt to try!”

Good point, what did we have to lose?  After all, he does love to swim….See Blog #17~Life’s a Beach @https://wordpress.com/post/nickspecialneeds.com/459 for more about Nick’s swimming experiences.

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I read through the information, watched an ABC news piece and checked out the website (www.diveheart.org.)

Scuba diving is the only activity in the world that has zero gravity. And the enjoyment of that zero gravity gives people with various physical disabilities a special freedom.  Jim Elliot started the organization called Diveheart and has been working with divers with disabilities since 1997.  Elliot states that, “There’s a very, very short learning curve in scuba diving with for people with disabilities and without disabilities.”  “Diveheart is a nonprofit whose mission is to build confidence and independence in children, adults and veterans with disabilities through the activity of scuba diving,” said Elliot. “We serve all disabilities. Kids with autism and Down syndrome, the vets coming back with traumatic brain injuries, amputations it doesn’t matter. The only thing that keeps you from diving is pressure related illnesses, open wounds and people with seizures can’t go deep.”

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Fast forward to last week….  I opened up my laptop and found this in my inbox from Mrs. Jordan.  I was stunned!

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Here’s what Mrs. Jordan wrote about Nick’s scuba experience…..”It’s pretty cool; I was getting emotional watching him. He did such an awesome job and I was so impressed with how relaxed he was during the entire process. He followed their instructions without any hesitation. I would definitely recommend trying this again possibly with the same organization. The Diveheart instructors used verbal instructions for Nick. They did show him how to open his mouth wide to get the breathing piece all the way in. They thoroughly explained to him everything they were doing. They did not use visual pictures at all. I had a peer partner in the water with him assisting the instructor. The instructor did have to hold the breathing piece in his mouth for a while until Nick realized he had to hold it. Once he got the hang of it he did not want to come up! He was SO relaxed the entire time. They had pretend fish/water toys in the water and Nick LOVED diving for them! Needless to say, he did not want to get out of the water. He was in for about an hour!”

Look at my frogman go :)….

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Diving for toys…..

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Sometimes I have to remind myself not to set limits on Nick.  Mrs. Jordan was right, it can’t hurt to try. Thank you Mrs. Jordan and Diveheart! 🙂 I am very grateful for Nick to be given this opportunity.  I would never have thought to try something like this.  Lesson learned, sometimes you have to *Think outside the box.

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That’s what is in my noggin this week.  🙂

~Teresa

*Thinking Outside the Box according to The Phrase Finder means to think creatively, unimpeded by orthodox or conventional constraints.  It originated in the USA in the late 1960s/early 1970s. It has become something of a cliché, especially in the business world, where ‘thinking outside the box’ has become so hackneyed as to be rather meaningless. The ‘box’, with its implication of rigidity and squareness, symbolizes constrained and unimaginative thinking.