Adults with PWS: Living a Happy, Healthy Life

Submitted by Emma Niedermeyer, 44, living with PWS

Emma is a 44-year-old individual living with PWS in Oregon. She lives in a group home but “is independent with some supports.” Below are the responses she submitted for our PWS in Adulthood blog series.

What steps were taken to prepare for life as an adult?

My parents helped me find a group home. And they became my guardians. I have ISP (Independent Support Plan) meetings once a year.

What does independence look like?

I live in a group home but independent with supports.

What supports are in place?

The kitchen and staff offices are kept locked when they don’t have an eye on them. And when I’m in the community there where they can supervise me.

Do you have romantic relationships? If so, how are those managed?

I did have a romantic relationship for 9 years He learned my supports so I was safe and lived in separate houses.

Do you work/volunteer in the community? If so, what does that look like?

I volunteer with Early Head Start of Lane County and foster kids. My home staff is in the room with me in a Corner supervising and I told them I can’t have or help with anything that is food and money related.

Do you have advice for parents on how and when to prepare for adulthood?

To have them in a group home with people that know what supports PWSA needs to keep them happy and healthy. Treat them as an adult otherwise they won’t be happy.

Is there anything else you would like to share about PWS?

We can still have happy healthy lives and be independent with supports.

Thank you, Emma, for sharing your story with us!

Share your story by filling out the form below.

Please note that not all questions are required. We invite you to share what you are inspired to share.

Email*
Name of person submitting*
Relationship to individual with PWS*
Name and Age of Loved one with PWS*
State where individual with PWS lives*
What steps did you take to prepare for their life as an adult?
What does independence look like for them?
What supports do they have in place?
Do they have romantic relationships? If so, how are those managed?
Do they work/volunteer in the community? If so, what does that look like?
Do you have advice for parents on how and when to prepare for adulthood?
Is there anything else you would like to share about your loved one with PWS?
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