The Traps and Gaps of Special Needs Parenting

Recently, my husband had surgery for prostate cancer. Not to worry. All is well and the procedure was a success. However, the process was grueling. It was a long s-l-o-w recovery filled with pain, exhaustion and pills – and that was just me – he had a hard time too!

During the long weeks of his recovery we watched a lot of TV.  One afternoon a commercial for a cancer drug came on.  It portrayed a woman with metastatic breast cancer going about her daily routine and she didn’t look sick.  The weather was beautiful and she was out at the local farmer’s market buying organic fruits and vegetables.  As she pedaled up to her lovely home with fresh cut flowers and produce in her wicker bike basket, a faithful golden retriever trotted up to greet her.  When the commercial ended, my husband and I looked at each other like, REALLY?  We were in the midst of dealing with a cancer diagnosis and our experience did not look anything like that! Although, in all fairness to the drug company, it did closely resemble the end of the commercial where they listed all of the horrible side effects…

Traps & Gaps Parenting Blog - Copy

THE COMPARISON TRAP

Have you ever felt this way in your experience as a special needs parent? Have you ever thought, ‘What a crock!’ I know I have. Let me set the scene. You are bone tired and emotionally exhausted from dealing with your child with <insert condition>.  You pour yourself a cup of coffee, grab your phone and plant yourself on the couch to catch your breath.  You login to social media and instead of feeling refreshed your heart sinks.  Your neighbor’s son, same age as yours, has just gotten an academic achievement award in middle school and you’re still trying to teach yours how to tie his shoes.  Your sister is off on a Disney vacation while your last attempt at a fun family outing resulted in your daughter melting down at McDonalds due to sensory overload.  You are genuinely happy for your friends and family.  They are good people. Supportive. Helpful. Loving. But all you want to do is unfollow their profiles because their ‘perfect’ life is painful to watch.  STOP!  Don’t fall into the comparison trap!

If I have learned anything on this special needs parenting journey it is this:

It is destructive and futile to compare our children to those of their typically developing peers.

That’s it. No other advice on the subject. No anecdotes. No inspirational quotes. Just a heartfelt plea for you to do yourself a favor and STOP! I cannot put it any clearer and I cannot stress it enough. If you can conquer this one temptation your special needs parenting journey will be 100 times easier. It will allow you to relax and enjoy your child for who he or she is.

THE UNHAPPINESS GAP

There is a theory that states that the space between our expectations and our experiences is called the unhappiness gap.  In other words, how we think things should be and how they really are = our level of unhappiness in any particular situation.

So forget the shoulds. Don’t worry about what other people’s children are doing and when. And don’t get fooled by the commercials for shiny happy lives that people broadcast. Like those unrealistic advertisements on TV, the reality of their situation usually doesn’t match the hype.

Life is messy. Parenting is hard. And parenting a child with special needs is even harder. Keep your expectations realistic, accept your reality and remember that NONE of us ever gets away without experiencing some of the nasty side effects of life.

Until next time,

Colleen

 

 

 

 

 

 

Adaptive Triathlons: A Win-Win-Win For All Involved

Here at FATWHEELS we are all about inclusion.  And that’s why I was so excited when Kelley Newman of Monroe Carell Jr. Children’s Hospital at Vanderbilt University in Nashville, TN., contacted me. Kelley organizes the hospital’s Tri My Best Triathlon. A swim, bike, run event for children of all abilities. This unique buddy program pairs children with and without disabilities to complete a race together as a team, using modifications if necessary.

Kelley said that children can complete the swim portion of the race by being pulled in a raft by their buddy or swimming with a noodle; whereas, the bike portion can be finished on an adaptive bike or by pedaling a standard bike alongside their buddy.  Finally, the run portion of the race can be completed on the athlete’s own two feet or by being pushed in a wheelchair or jogging stroller by their buddy.

The goal of the program is not just physical, but social as well.  Kelley said that she intends to match buddies and athletes of similar ages, in order to encourage peer interaction and help friendships grow.

Kelley is passionate and it’s infectious. “By working as a team, each child learns that winning is not just what happens at the end of the race, but during the journey of getting there together,” she said.

After that statement — I was sold. I loved the concept and was determined to get involved. I mobilized my team and we backed the event wholeheartedly.

The first  Tri My Best Triathlon was held eight years ago in Augusta, GA.  Since then, the concept has grown and this year adaptive triathlons are being organized nationwide. I encourage you to attend one. They are a fabulous way to spend a day as a volunteer, family member, athlete or simply a spectator.

Kelley said:

Everyone should experience a Tri My Best Triathlon.  Athletes, both with and without disabilities, are always proud of their accomplishment. Parents of children with disabilities are usually astounded at the ability of their child to complete a race, and parents of children who are helping as buddies are proud of their child’s efforts to help another child achieve success. Bystanders along the race course and finish line are very moved by the unity and efforts of each buddy team.

I couldn’t have said it any better.

Why not take it one step further and organize your own Tri My Best event? If you are a private therapy clinic enlist your staff and go for it! If you’re a parent, gather family members or special needs parents in your community and make it happen!  Ask a special education teacher or physical therapist if they or some of their colleagues might want to get involved.  Contacting your local children’s hospital or the physical therapy department at a university in your area may also be a good place to start.  To get in touch with others, who have already taken the plunge, here are some contacts:

Kelley Newman
Monroe Carrell Jr. Children’s Hospital (Nashville, TN)
kelley.newman@vanderbilt.edu

Mary Eckhard
St. Louis Children’s Hospital (St. Louis, MO)
mary.eckhard@bjc.org

Tender Touch Therapy (Kenosha, WI)
frontdesk@tendertouchtherapyllc.com

To discuss sponsorships or any equipment needs you may have for FATWHEELS adaptive training wheels, please contact me directly at: colleen@fatwheels.com

Let’s work together to help this movement continue to spread!

Until next time,

 

Colleen

 

 

 

 

 

 

 

 

Regain Your Balance with Adult FATWHEELS

Regain your Balance Pic

If you are a senior, you may be helping your grand kids learn how to ride a bike. You watch as they make the transition from training wheels to riding independently. Their journey is not without wobbling, falling, and scraped knees. You help them up with encouraging words, a kiss, and a Band-Aid. Eventually, you witness the pure joy on their face as they finally manage to pedal without training wheels!

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Meet Chris Kennard

Chris Kennard is a 13-year-old from De Pere, Wisconsin. He is a reader, a swimmer, and now with the help of FATWHEELS… a cyclist!

Christmas Morning

A new bike with a set of Large FATWHEELS was waiting for Chris beside the tree on Christmas morning.  His father, Jay Kennard, also purchased a bike stand trainer hoping it  would help Chris develop his pedaling skills.  Jay reports that he had trouble at first, but by adding foot cages to the pedals, Chris can keep his feet straight enough to pedal for 15 minutes at a time. A BIG accomplishment for Chris. Continue reading →

Meet Rachael Wrobel

Rachael Blog Pic

I first met Rachael at a bowling alley.  She is a support worker for people with disabilities and she was there with a client. At the time, I was looking for someone to work with my son and Rachael was highly recommended. Acquaintances told me she was a safe driver, filled out paperwork on time and was very engaged with her clients. She sounded perfect, so I walked over to meet her. I waited while she finished assisting a young man with his bowling shoes before I stuck out my hand to introduce myself.  She extended her hand towards me and that’s when I noticed that she has no fingers. Yes, you read that correctly—the girl who drove to the bowling alley, helped her client with his fine motor tasks and filled out service logs…Has. No. Fingers.

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