Don't Worry About the Small Stuff and Be Patient

Dont Worry About the Small Stuff and Be Patient.jpgA special contribution by guest blogger Teri Douglas

Teri shared her story via our Stories of Hope questionnaire.

How has your child exceeded your expectations?

Jacob is 21 years old and just graduated from high school in May 2016. He is attending the Easterseals day program now and is currently interviewing for a job.

What gives you hope for the future?

Jacob is happy and healthy. He is 5'11" and weighs 155 pounds. He manages his 1,500-calories-a day-diet plan and his 45-minutes-a-day exercise plan. He knows all about nutrition and what foods are good for him. He wants to work and loves researching on his computer. I know Jacob will be his own advocate when I am not here to help him. When there are the right people out there to support Jacob, Jacob is happy.

What are you thankful for?

Jacob is 21 years old, and when he moved out two years ago, it was so hard to let him go because I want to take care of Jacob forever. But now when he comes home on the weekends, he shows me how independent he is.

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

Patience, Patience, Patience. Don't sweat the small stuff. His OCD quirky behaviors can drive me crazy, then I realize: Let it go!

Describe a time you surprised yourself with your ability to do the impossible.

Jacob moved to individualized supported living (ISL) at 19 years old because of some very challenging behaviors. It killed me at first, but I am 60 and won't be here forever, so I know it is preparing him to be able to survive on his own.

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 have fought the schools, the living arrangements in the ISL and the people who think they know PWS. It is a constant battle, but it is worth it when your kid gets what they need to be successful.

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

They will be fine. They will be happy. Don't worry about the small stuff AND be patient. Be calm. Be grateful.

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


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.