TIP of the WEEK: What I Know

April 18, 2014

For the past 16 years I have worked almost exclusively with people diagnosed with PWS. It has been the joy of my professional life and I would not want to be doing anything else. I have learned a thing or two over the years. Here are the top ten things that I would like parents to know.

1. The very best ideas come when we are about to give up. I can’t tell you how creative and innovative a person can become when the only alternative is to fail. I have seen this countless times and it never fails to astound me how many ideas come from the drive not to give up on someone.

2. People with PWS can and do make the best of everything. Faced with innumerable odds they thrive and force everyone around them to step up and notice their contagious love of life despite so very many challenges.

3. It only takes one person to believe in your child. Keep that person in your life.

4. If you can’t throw it in the washing machine on hot, it’s never going to get clean so don’t buy it. Keep it simple. Don’t try to impress anyone. Any extra time that you have should be spent on yourself not on your laundry/house/car/nosey neighbors or in-laws. Do the minimum on unimportant tasks; you’ll need all the energy you can get.

5. When you’re in the car alone listen to the music that you loved in high school; Loudly. This may be your only chance that day to unwind. Use the time wisely.

6. Invest in a really good carpet cleaner. Just trust me on this one.

7. You can do this. There will be days that knock you down and you will not want to get up. But you will and it will be worth it.

8. The paid people in your child’s life care. They do. They will make mistakes and will never love your child the way that you do but they will love your child. Give them the benefit of the doubt and allow second chances. The vast majority of caregivers and health professionals are in their jobs because they are compassionate and giving people. Understand that they come from a place of healing and caring when you interact with them. Success is measured by your child’s happiness so know that they want the exact same thing that you do but may approach it differently.

9. Experts can be wrong. Trust your gut. I have learned just as much from a 10 minute conversation with a child with PWS as I have from professionals who have spent a lifetime working with them. Both experiences are just as valuable. Be an open minded and flexible advocate. Listen to everything and use only what works for you.

10. Love your child for who they are, not what you want them or wish for them to be. Will they meet all of the typical milestones? Probably. Will they graduate from school and hold down a job? Most likely. Will they ever stop picking/yelling/being aggressive/being rigid? Maybe and maybe not. Will they have a happy and fulfilled life? Yes. They will. They will find what brings them joy and they will have relationships and interests that are uniquely theirs. I don’t profess to know everything but I do know that their life will be worth celebrating and you will survive the journey and in the end will have given the world a person who made everyone around them better just for knowing them.

Submitted by:
Patrice Carroll
Manager of PWS Services

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