Jacob’s Story

Jacob’s Story, as told by his mom, Teri:

“Jacob is my 25 year old son with UPD PWS.

Thankfully PWSA has been there for us since Jacob was born. We have definitely had challenges over the years.

Those teenage years were filled with behaviors so we tried an ISL (independent supported living) in Kansas City, MO but it didn’t work out. After 5 years in Kansas City, Jacob moved back home. He’s been home for 2 years now and is much better.

The toughest time was his psychosis 3 years ago with 2 weeks in the hospital. We are still adjusting meds after 3 years. That will always be our biggest fear.

During those years, PWSA | USA was always there for us. From crisis calls during the behaviors to get Jacob out of the house, to taking calls to help the staff at the ISL try to understand PWS to help get him back home. Now, PWSA | USA is helping us  prepare for retirement and trying to see where Jacob will be when I am not able to take care of him any longer. It is a challenge, but to know PWSA | USA is still there, has helped us the most over the years. The Facebook community for parents has been great help as well.

Jacob is so happy now. There are still issues with behaviors but they are much better now with meds and support. Jacob goes to his day program and loves being out in the community. We now have an ABA behavior therapist that helps and the staff at Jacob’s new day program are trying to get familiar with PWS. We also finally have a great support coordinator through the state that helps us get support. Advocating for Jacob through the years has been tireless and is endless. I don’t know how I would have known even where to begin without PWSA | USA always being there for us. Thank you so much!”

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