Friday, March 29, 2013

TIP of the WEEK: PWS? A "To Do List" for New Parents


We regularly receive calls and emails from parents asking for advice. Advice about behavioral issues, medical needs or guidance for placement funding. There is no formula or checklist to guide parents through this overwhelming maze but there are basic things to know and do at each stage. Although some children are diagnosed later in life, nowadays the vast majority of children are diagnosed within days of birth. Here is our “to do list” for those new parents who are brand new to the PWS world:

  • Allow yourself to have your feelings but know that you have been given a gift, not a burden. Your life will be different but good, really good. Turn to your family for support but only if they are helping. Negative comments and pity are not helpful and serves no purpose for you. Don't let that in. Ask for help and accept it every chance you get.
  • Reach out to parents of toddlers. Parents of infants are just as overwhelmed as you are and parents of older children may not remember the details of those first few months. Parents of toddlers have just been where you are now.
  • Stay off the Internet! Most of the information is outdated or sensationalized. Stick with publications or websites of trusted programs and groups. Ask families or ask us, there is good info and support out there for you.
  • Find an endocrinologist, OT, GI doctor and PT that either are experienced with PWS or are very willing to learn.
  • Take time for yourself. You are no use to anyone else unless you are rested and healthy.
  • And most importantly, enjoy your baby. He or she may not hit their milestones at the same time as the books predict but they will reach them. They will make you laugh and bring you as much or more pride than any other child would. Show them off, brag about them and have fun. Ask questions, call for help and keep calling until you get the answers that you need and relax.
Remember one of my very favorite quotes:
"Everything will be ok in the end. If it's not ok, it's not the end". - Paolo Coelho

We are always here for help or just to listen. Don't hesitate to reach out!

Patrice Carroll
Manager of PWS Services

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