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Published December 16, 2015

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  1. Kristy Schena April 13, 2015

    Stay Connected with Other Parents
    Connect with and support other parents who have children with special needs. That was a common theme during my conversation with Deena Trocino, a Kids on the Go parent and mother to Gracie a child with Down Syndrome. Deena emphasized the importance in connecting with and supporting other parents who are going through the same things.
    “It’s invaluable to know there are others who may have advice; or even words of encouragement that it’s going to be okay,” Deena said.
    Four years ago, Deena and her husband, Doug, were blessed with Gracie. They also have 4 other children: Gina (28), Tommy (24), Dougie (24), and Tony (14) as well as a 5-year-old grandson and a second grandson due in June. The family was not expecting to have another child; they were surprised and unprepared.
    “We (Doug and I) like to joke and say we have a child in each decade,” Deena said. “But, God has taken us on an amazing journey with Gracie; a child with special needs.
    “She has truly been our angel is disguise,” Deena said. “She has brought so much joy to our lives and has truly taught us what genuine love and compassion are.
    “There is not a day that goes by that someone doesn’t say how much they love our little Gracie,” she said. “So many express how much joy they get from seeing her pictures and videos we post.
    “We get stopped everywhere we go with people wanting to stop and say hi or receive a big hug from her,” Deena said. “At only 4 years old Gracie has captivated the hearts of so many. We believe that God will truly use her to make a positive impact in the world. She surely has done that in our lives.”
    During Summer 2014, Gracie attended the KOTG multi-disciplinary camp for the first time. At the time, Gracie was speaking few words and using mostly sign language to communicate. Since attending KOTG, Gracie’s vocabulary has increased to her being able to speak 2- to 3- to even 4-word sentences.
    “It’s important to understand that even though your child may have some challenges, they are every bit as capable as any other child,” Deena said. “They are every bit as capable of being successful in their lives.
    “They may take a little more time,” she said, “Or, need a bit more help. But, they will accomplish great things if you encourage them and show them that they can.
    “We don’t treat Gracie any different than any other child,” Deena said. “She is held to the same standards we have expected of our other four children. She doesn’t know she is any different or may not be able to do something.
    “We don’t treat her like she has a disability,” she said. “We encourage her to reach for the stars and she amazes us every day with her willingness to learn and to grow.”

    Doug is a web developer and computer programmer; Deena serves on the board of education for East Detroit Schools; and together they are executive directors of Eastside Teen Outreach, a non-profit they have owned for nearly 15 years to help marginalized or at-risk teens.

  2. Kristy Schena April 13, 2015

    Regan Wright Pays It Forward

    Recently, Kids on the Go recognized its Parent Advisor, Regan Wright, with its first John W. George Sr. Award of Excellence. Kristy Piana Schena, KOTG Executive Director, honored Regan with the award because of Regan’s ongoing active volunteerism, public advocacy and support of families who have children with special needs. Kristy presented the award at the KOTG Art and Soul Charity Gala in November 2014.

    Her involvement with KOTG began when she read an article in the newspaper about KOTG and its multi-disciplinary therapeutic camp. She earmarked the day to call and register her son, Griffin. When she called, Kristy informed her that camp was full, but Griffin was first on the wait list.

    “I called the very first day of registration,” Regan explained. “My initial reaction to camp being full was, WOW!

    This camp must really be good if there is a wait list on opening day of registration,” she said.

    Griffin was able to secure a spot right before the start of camp. He was age 5. He then attended the multi-disciplinary camp for two summers.

    Her oldest son, Austin, who is 2.5 years older and who is not a child with special needs, was jealous of all the fun Griffin was having at KOTG camp.

    “He (Austin) had no idea the camp was providing therapeutic help for Griffin,” Regan said. “All he could see was FUN!

    “Often Austin asked if he could be a helper when we dropped Griffin off for camp,” she said.

    Austin hopes to be an Eagle Scout in a few years. To be an Eagle Scout, you have to do community hours and Austin wants to do his hours for Kids on the Go. He also asked his middle school, Brownell to raise money for KOTG via their school store. The school store sells school spirit wear and snacks and they asked the students to donate any change to a worthy cause. During the months of December and January, KOTG was the featured charity. Brownell raised $200 in change for KOTG.

    “I am a firm believer in paying it forward,” Regan said. “I grew up with parents who volunteered all the time.

    “My parents always said not everyone has money, but everyone has time,” she said.

    Regan has lived in many different places in the U.S. and has found volunteerism helps her to feel connected to communities. Regan splits her volunteer efforts. She helps KOTG for Griffin; and Troop 96 Boy Scouts out of the War Memorial for Austin. She organizes the troop’s monthly camping weekends. While this position is mostly behind the scenes, it requires a tremendous amount of organization, communication and attention to detail.

    In her role as Parent Advisor, Regan serves on the KOTG board of directors. Wright helps the board better understand the daily struggles and long-term needs of families who have children with special needs. The range of needs varies so widely.

    “My lens on the world is very different from those who do not have children with special needs,” Regan said. “There is not a manual on how to navigate life when you receive your child’s diagnosis.

    “You need information,” she said. “But, a lot of time, you don’t have the energy at the end of each day to explore answers, research options and decide on your next-steps.”

    Regan collaborated with the board as well as with Kristy and two therapists to Parent Empowerment Workshops that were introduced as part of the KOTG summer 2014 camp program. Parent Empowerment Workshops provided parents with access to information on so many issues they confront. Topics included estate planning, toy shopping for children with special needs, and how to make play-time fun and therapeutic. Workshops will return for Summer 2015.

    The workshop on estate planning with Michele Fuller of Michigan Law Center went for 3.5 hours.

    “It is a topic no one likes to think about. But, it is so critical,” Regan said. “Those who attended were fully engaged. The question and answer period made us all think deeply and evaluate the future.

    “Word spread quickly about how informative the program was and many people wanted a second chance to clear their calendars for this topic,” she said.

    KOTG will repeat the estate planning discussion as well as shopping night at Whistle Stop in St. Clair Shores. Parents, grandparents and caregivers can learn to buy toys for their children to develop or help reinforce skills.

    See the complete schedule as well as topic descriptions for the Summer 2015 Parent Empowerment Workshop series at http://www.kidsonthegocamp.com/programs/parents-empowered-workshops/


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