BY MICHELLE BOUDREAU
On September 1, 2016 Grace will walk into James Memorial High School in Madison, WI with her best friends, Luke and Nicole, and enjoy all the perks that come along with being a senior in high school.”
~ Grace’s mother Shannon
As the summer is coming to a close and we move into fall, one thing that is certain and comes every year at this time is kids going back to school. Parents and students prepare for the coming year in different ways — shopping, class preparation, teacher meetings, after school activities and much more. I have noticed one trait teenagers tend to have in common, and that is they want to fit in. Adolescents want to feel accepted by their peers. They want to feel as they are part of the big picture with groups and the school community.
Some may recall an article a few months ago in Exceptional Parent magazine titled, “Grace Defied the Odds.” The article detailed Grace Kenitz going to her senior prom. Grace was the belle of the ball on May 7, 2016, when she attended James Madison Memorial Public School’s Junior Prom, which had a masquerade motif.
This is an exceptional accomplishment as Grace was born with a rare mitochondrial disorder. For most typical children, going to public school, making new friends and attending school dances are common events. However, for special needs children, these types of activities are sometimes not within their reach. It was a difficult decision for Grace’s mother, Shannon Kenitz, to make when she decided to enroll Grace back into public school for her freshman year. Now, looking back, Shannon feels it’s one of the best decisions she has made.
Shannon noted, “It is still amazing to me that Grace is attending high school, considering we were told she would never live past the age of two. In retrospect, Grace attending school was not at the top of my priority list, as I just wanted her to live to reach her second birthday.”
Shannon continued, “Now I am sitting here in awe of her walking through department stores and her picking out the clothes that catch her eye, with an intrinsic wonder as to whether this is ‘what’s in.’ Yes, Grace will soon begin her senior year of high school and I can’t even catch my breath without crying. On September 1, 2016 Grace will walk into James Memorial High School in Madison, WI with her best friends, Luke and Nicole, and enjoy all the perks that come along with being a senior in high school. I will make sure she enjoys all those special privileges that seniors eagerly wait to have. And yes, I will even let her participate in senior skip day.”
EXPECTATIONS DEFIED: It was a difficult decision for Grace’s mother Shannon to make when she decided to enroll her into public school for her freshman year. Now, looking back, Shannon feels it’s one of the best decisions she has made.
“I know that for many parents with special needs kids, we tend to be afraid of the unknown and the possibility that our child will be teased or left out. Conversely, one thing I learned is that if I chose to keep Grace out of school because of those fears, she would never know that true friendship is possible between typical kids and kids like her. I can’t allow my fears to stop her from having her chance in life and all the experiences that follow. Of course, her normal is not like her sister Lily’s normal; however, it’s her normal to experience and I can’t wait to follow her through this milestone.”
“This is all amazing, considering Grace was a child who was given zero chance to live, and whose momma, I, was told that her daughter would never understand love or compassion, let alone to have friends or even laugh. My cup runneth over Miss Gracie! Way to go Gracie, Senior year is going to be amazing!” Shannon is confident in the education and care that James Madison Memorial High School provides for special needs children. I had the pleasure of interviewing a select group of extraordinary people that work closely with Grace at her high school.
Jay Affeldt, a James Madison Memorial High School alumnus, has been principal for past three years. He started working 17 years ago with a teaching position and has since held several roles including school improvement coordinator. Principal Affeldt told me about a wonderful program that was created mostly by students called the Peer Partner Program. This is a community-based endeavor that includes typical students who are passionate about equality and unity within the student body. They started with a grassroots venture by informally reaching out to special needs peers and through formal peer partner efforts. Peer Partners started as a volunteer, extra-curricular program, which takes place during lunch or after school. Typical students would spend time with special needs students, to talk and build the community.
Approximately three years ago, the Peer Partner Program transitioned to a new level as a select group of upperclassmen, with great passion, took the initiative to meet with the school staff. The students had requested that they not only work outside the boundaries of the school day, they also asked if they could work with the special needs students within the classrooms as well. The upperclassmen questioned, “Why couldn’t we be the ones helping provide services to the special needs students when they are in the physical fitness or art class?”
With careful consideration and scheduling, they were able to create a series of Peer Partner classes where typical students that are scheduled in as peer mentors, pair up with special needs students and attend classes together. As courses continue to develop, Principal Affeldt remarked, “We have a school that is quite inclusive by comparison to many. It creates a wonderful experience for all involved and the feedback that we have received from the students and families, both typical and special needs, has been extremely positive and powerful.” He continued, “It is hard to believe it was only about three years ago when Peer Partners was just an idea.”
Principal Affeldt recalls one of the most powerful moments in his career, when a group of students took the initiative and reached out to Shannon to say, “We think Grace needs to go to prom and we’d like to be the ones to help her get there.” The students included Grace in every part of the process, from making sure she had a dress, to walking her in and dancing with her. Principal Affeldt said, “It’s a very powerful message sent from the student body. They have become an example of exactly what we desire for them to be as adults. And the positive impact it had on Grace and her family has resulted in a memory of a lifetime.”
The peer partner program is available to special needs students through age 21. Principal Affeldt explained that they try to have a very comprehensive program so special needs students can transition smoothly into their life beyond 21. This includes making sure they carefully develop skills through high school, and gradually layering in skills that will help them become increasingly independent in their vocational and pre-vocational training.
They start with basic tasks, including following instructions and working with others, which can have a direct effect in their future when applying for community employment or volunteer positions. They have staff that spend their days in the community, engaging in employment-related activities that set them up for success after they transition out of the program. The prominent international retail chain “Forever 21” is a proud supporter of the special needs community and has employed special needs students from the James Madison Memorial peer partner program in the recent past.
COULD’VE DANCED ALL NIGHT: This past May, Grace attended prom with her friends, which had a Masquerade Ball theme. The dance had a positive effect on Grace for the entire evening and long after the evening ended.
Affeldt mentioned how he is very proud to be the principal at a school that has developed a culture of reaching out to each and every student. He is proud of the school staff, as they remain compassionate and want every student to have a positive experience as a larger school community. They have a bit of history now with the Peer Partners Program stating, “I’m doing everything I can to make sure that every student has great experience.”
June Patterson, a Special Education Aide at James Madison Memorial High School, recalls two years ago when she first started working with Grace. Grace would frequently stop and sit on the way to class, and now, she walks quite a bit of distance all the way to class. June also noticed her personality blossoming as she used to be a bit shy. Grace now greets other students she knows, recognizes them with a high-five and calls them out by name. Also, she has the confidence to walk up to other students she does not know and greet them hello. June noticed that the other students are very receptive to Grace where some have commented on how cute her outfit is—which parallels the desire for high school girls to enjoy expressing themselves with their own style and appreciating the compliments on their look and style.
June also shared that Grace has a specific time she goes into the hyperbaric chamber for treatment. Grace seems to know what time that is, instinctively, and will start walking to the chamber. This is great news as Grace’s mother is a special needs advocate and speaks both nationally and internationally on the subject. Shannon remains passionate and feels that the hyperbaric oxygen therapy (HBOT) saved Grace’s life.
Brandi Whitlock is Special Education Assistant at the high school who recalled meeting Grace three years ago and feels she has progressed tremendously. Brandi said, “Grace is a typical teenager who loves to dance, laugh and, yes, flirt with boys in the hall at school!” At the top of Brandi’s list when spending time with Grace, is to play her favorite song, as Grace will start dancing. Her favorite song this past year was by Jennifer Lopez, called “Ain’t Your Mama,” Brandi said it delights her to see Grace so happy dancing to her favorite song! She stated that Grace has a strong opinion when it comes to what and who she likes. She will often ask for people by name and will ask for what she wants. She has a great sense of humor and enjoys a good laugh. Grace, like typical teenagers, loves to visit the mall where she indulges in gluten-free ice cream and French fries.
Nicole Pham is a typical student and participant in the Peer Partner Program at James Madison Memorial High School, and now considers herself a close friend to Grace. Nicole first met Grace when she became her partner in gym class and, for two weeks, spent one-on-one time with Grace. Nicole had the opportunity to focus on Grace and felt they had a special connection. She is very proud of Grace, as her vocabulary is increasing and they are communicating more than ever before.
Nicole considers the Peer Partner Program to be one of the best programs in school, as it allows her to become friends with people she wouldn’t necessarily have the chance to become friends with. Nicole sees Grace every day during the school year and even made an effort to see her over the past summer. Nicole said that Grace looked absolutely beautiful for her prom, she had such a great time and she danced the whole time! Nicole stated the prom had a positive effect on Grace for the entire evening and long after the evening ended. When I asked Nicole what she expects this next year will be like with Grace, she said she doesn’t really have expectations. She feels they are just normal friends who like to hang out in Grace’s house or watch movies, like they recently did. They also go bowling, swimming, listen to music and share jokes. Nicole loves watching Grace flirt with the boys.
Luke Vander Meer is also a typical student at James Madison Memorial high school who first met Grace last year during the Peer Partner’s gym class. He said the program allows typical students going to high school to bond with special needs students and form relationships. The program also increases the students’ understanding of their differences and helps them form a community with common ground. Luke shares, “Knowing Grace and spending time with her is such a small investment, such as going over to her house for an hour or two, walk her into the prom dance. They make a big difference in her life.” Luke describes Grace as talkative; one who laughs loud, and smiles a lot. He enjoys when her favorite song comes on and she dances.
In closing, this has been a special interview for me as I know Grace very well. To hear all of the wonderful compliments and distinct personality traits her friends and teachers have shared about Grace is heartwarming. In writing this story, my goal is to encourage other schools to follow suit and incorporate the similar Peer Partner Programs into their education and curriculum structure. •
ABOUT THE AUTHOR:
Michelle Boudreau is a national bestselling author who was once considered for a Pulitzer Prize nomination. She is a UCLA alumni, and media journalist, authoring numerous publications. Boudreau has 16 years’ experience as a consumer product specialist, focusing on health product awareness.