The Power of Parent Support

 

Power. Parent. Support…

For those of you who have heard me speak or have watched the “hello” video on the Parent to Parent of PA website, you have heard me talk about the, Power of Parent Support. We believe that by matching you to a veteran parent (Peer Supporter) who has traveled this journey before you, they can provide a level of understanding that probably cannot come from any other source…that’s powerful!

When our children are born with special needs, we may lose part of the opportunity to relate to others whose children do not have special needs.

Where can you turn if you feel that no one understands, you feel isolated and have never had the opportunity to speak to another parent whose child has the same condition or concerns? At Parent to Parent of PA, our staff are all parents of children with special needs and are the first line of support before we connect you to one of 1,900 Peer Supporters across the state.

Let me share with you some of the comments we have received from parents that help explain in their words the power of parent support…

Every doctor he saw provided more diagnoses. The worry, the unknowns, and the endless hours of research took their toll on us. Nobody seemed to understand what we were experiencing. There was not a support system. We had fallen overboard. We felt alone in an ocean of emotions – love, happiness, joy – – despair, fret, and fear. I finally learned about Parent to Parent; I was tossed a life preserver.

“Mom stated that she and [Peer Supporter] had a wonderful conversation.[Mom] tells [Regional Coordinator] that a million dollars could not compare to the peace of mind that [Peer Supporter] provided to her. Everything she said or described was exactly how I felt.”

Mom stated that because [her child] has such a rare disease she had no one to connect to for support. “Thankfully parent to parent connected us to a family who is going through the exact same thing. We still talk every day. Thank you for helping us to connect!”

Mom shared that she strongly agreed that her expectations from the phone support were met by having someone who truly understood everything my family and I have been going through. I wanted someone to speak to who could relate to my experiences, and help me feel less isolated.

When my daughter was born 31 years ago (where has the time gone?) with Spina bifida, I did not think I needed support. My sister was born with Down syndrome and I watched my parents model inclusion (before the word was fortunately introduced into our vocabulary) advocacy and compassion. However, what was different was that my daughter has had over 20 surgeries. When I found support through a local Spina bifida support group, I learned that the parents were walking encyclopedias. I could now talk about the many surgeries that my daughter has had and they understood! I was hooked on parent support and how powerful that connection can be and I want the same for you!

All my best,

Fiona