Parents of Children With Special Needs: We're Unstoppable!

parents-of-children-with-special-needs-were-unstoppable.jpgA special contribution by guest blogger Rosemarie Rouse

Rosemarie shared her story via our Stories of Hope questionnaire.

How has your child exceeded your expectations?

I was told that he would not reach the benchmarks of a typical child, yet he does it all: tells stories, sings songs, walks, runs, navigates all of the playground equipment, recognizes all of the letters of the alphabet and numbers through 10, writes his name, and more. He just entered the Kindergarten.

Who has helped you in your PWS journey?

Other families in the PWS community, FPWR, Dr. Angulo, Dr. Miller, all of Max's therapists from early intervention through the present, the staff at his pre-school and my personal family and friends.

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

I never thought I would run a 5K. I never thought I would be successful and raising funds for a cause.  

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

I would tell a parent that although things may seem grim and cruel at first, there is hope. Our kids can and will do the things everyone thought or said they won't. You just have to persevere and be patient.

What gives you hope for the future?

Research gives me hope. The support of the PWS families with my community and beyond give me hope and inspire me to press forward.

What are you thankful for?

I am thankful for the love of my son, for all those who support and help him, and for all those who have been there for me through the most difficult time as well as during the best times.

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

I can make a difference, even if I take one step.

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.”

We think that there are limits to how far we can stretch ourselves with everything in our lives. However, we learn that when we have a child with special needs, there are no limits. We will push past every boundary, uncover every stone, and challenge ourselves in ways we never thought possible to achieve our goals because we truly believe we can and NO ONE is going to stop us.

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.