Your Child Can and Will Have Successes You Can Barely Imagine


A special contribution by guest blogger Dan Yashinsky

Dan shared his story via our Stories of Hope questionnaire.

your-child-can-and-will-have-successes-you-can-barely-imagine.jpgHow has your child exceeded your expectations?

Our son exceeds my expectations just about every day. After a very tumultuous period in his late teens and early twenties, he now works as a crossing guard for Toronto Police Service. He gets up at 6:30 every morning, walks the 1.2 kilometers to his intersection, and helps kids get to school safely. He has three shifts per day. He's even saved a toddler's life when he noticed him running out of an unlocked car. We didn't expect that such a job would ever be possible for him.

Who has helped you in your PWS journey?

We have received good help from Dr. Berall, Karen Balko, our friends in the PWS community (OPWSA, FPWR), friends and family. The PWS community has been hugely important in our lives.

What would you say to a parent whose child has recently been diagnosed with PWS?

The first thing to understand is that it is virtually impossible to predict your child's future based on their newborn capacities. This is true of all babies, and it's definitely true for babies born with PWS. Your child can and will have successes you can barely imagine after visiting the inevitable websites and hearing the dire predictions of medical staff.

What gives you hope for the future?

The joy that our two sons bring into our lives every day.

What are you thankful for?

Being able to grow with our two sons. I'm 66, our eldest son is 29, and our son with PWS is 25. Every day is a gift.

What positive life lessons have you learned from having a child with PWS?

"Never say 'whoa!' in a mudhole." I think of this Canadian proverb every day. There are lots of mudholes along the way.  If you say "whoa!," telling your horses to stop, you'll stay stuck. If you keep going, if you keep trying, you'll eventually move ahead.

What does this quote mean to you?:

“Until you have a kid with special needs, you have no idea of the depth of your strength, tenacity and resourcefulness.”

I'd say that every child, and every parent, and every family group is different. There are times of resilience and times of despair ... not much different from normal families, but intensified by the higher stakes that disability brings into the equation.

 

Do you have a story of hope to share with others about your experiences with PWS? Send it to us!

Understanding PWS - Slide Deck

Topics: Stories of Hope

Susan Hedstrom

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Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the natural history of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she hosted her first One SMALL Step walk in 2010 and began the development of the One SMALL Step walk program which now raises over $1.5 million a year for PWS research.

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