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Meet a young woman with Rett

Jocelyn's Journey

GEMSS would like to thank Jocelyn and her mother for their generosity in sharing this story with us. You have made the site come to life with the addition of your thoughts and feelings. Thank you so much!

JocelynJocelyn is a woman who is living independently and has supportive roommates, family and friends helping her live an active life as an adult in her community.

Jocelyn began her public school journey in the early 1980’s in her small city in New Hampshire. Until fourth grade, she was entirely in special education classes. After her mother attended the NH Leadership Series, she asked the school about including Jocelyn in more meaningful ways in typical classes. Her request was met with enthusiasm, and, in fact, one teacher requested that Jocelyn be in her class! As with many programs in the 1980’s the social component of school was valued quite highly, while academic expectations were not as high. That has changed!

Jocelyn’s social life was extremely successful. In fact, she and her friends were the subject of a movie on friendships called “Voices of Friendship” which is a great testament to the power of friendship! (See below for more information on the Video).

Jocelyn worked hard with her team to come up with a communication system that was effective but that didn’t happen for quite a few years. She had the services of an Inclusion Facilitator while in school to help her school experience be more inclusive in all aspects of education.

Jocelyn graduated at age 18 with her peers and began her post graduate experiences. She had the services of a Home Health person who helped her attend classes at the Tech school, enjoy swimming at the pool, and volunteer in her community. She met several people who helped her engage more fully in college classes, including educators who valued Jocelyn’s educational and life experiences and sought her as a co-teacher in Jocelyn and her familytheir university courses. With her mother’s support, she prepared content that went along with topics on thesyllabus and presented them to the class. To learn more details of how Jocelyn taught, click here.
Later, as service dollars increased and she became eligible for subsidized housing, she moved into her own home which she rents using her funding streams. She has friends and paid supports who help Jocelyn have a full and engaged life. She has been to a Singles Club, goes to movies, shops and hangs out with friends. Her family lives locally and provides support as needed to fill any gaps and Jocelyn goes to her parent‘s home every other weekend.

Her transition from pediatrician to adult family practitioner came at about age 21. Her parents have power of attorney over her medical and financial needs but Jocelyn is her own guardian. She makes many decisions using an eye gaze and yes/no system. She reads people very quickly and is very sensitive to fairness, justice, and wanting to make her own decisions.

Her mother’s advice for teachers is to:

  • “assume competence” - Learn more
  • challenge themselves to think of the big picture
  • make sure their student’s know that they believe in them
Her advice to families is to:
  • Don’t hold back
  • Let your kids make mistakes and don’t be afraid of something going wrong
  • Share responsibility with others
  • Get your child set up independently and work out the kinks
  • Appreciate that as her daughter gained independence, her life blossomed and became richer!
View Voices of Friendship on YouTube.

For information on purchasing the DVD, go to the IOD Bookstore at the University of New Hampshire.