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!

Jocelyn 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 their university courses. With her mother’s support, she prepared content that went along with topics on the syllabus and presented them to the class.

From Jocelyn’s mother: I helped Joce prepare her presentations by sharing her experiences and asking her lots of questions (yes / no) to get to something she was happy with that shared her feelings and story.

The first year I wrote her story on a paper and it was read by a student. The next year I purchased a used laptop and wrote her presentation in a reader program (Read Please, as suggested by Karen Erickson), I would set up her computer to a LCD projector in the class and when she was ready to present, the computer read it aloud to the class while the projector showed the text.  Jocelyn would be able to interact with the students 1 to 1 or in small groups by responding to their specific questions (yes / no or when given clear choices).

This continued for several years, thru 2 professors (Susan Shapiro and then Cheryl Jorgenson) and a total of 4 different class topics (Best Practices In Elementary School; Best Practices In Secondary School; Contemporary Issues For Persons With Developmental Disabilities; and Facilitating Relationships). The last classes were even online classes.

I supported her through help writing her presentations but only supported her in class itself for the facilitating relationships classes.

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:

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.