The opportunity to share our story is appreciated and we hope that it will inspire families and parents of children with the Trisomy 21 chromosome defect known as Down syndrome. After learning that Jared had Down syndrome, my questions were, “What will his quality of life as an adult be like? “and “Will he be able to contribute, in some way, to society?”
Your loved one is capable and expects you to help him or her achieve based on their abilities.
Jared, now 22 years old, continues to transition from school to daily living and community involvement, with assistance and a circle of supports. He participates in the Home and Community Based Services offered through the Department of Mental Health where he learns and practices pre-vocational tasks to acquire skills needed for future employment. In addition to the pre-vocational skills training and community services, Jared likes playing with his game system, YouTube and sports. He participated in the Special Olympics winter and summer state events, earning a gold medal in basketball skills and silver medal in bowling. Jared also participates in the Challenger League, a sports league for individuals with disabilities.
Jared is active. He has a busy schedule and loves to socialize, especially at dances, with his peers. He recently became a cell phone user and the touch screen cell phone has helped to improve his ability to communicate. Jared also serves as an usher at his church and looks forward to his responsibility.
So despite Jared’s many surgeries and medical conditions, heart disease and Hirschsprung’s disease, being the most critical, we manage to live life to his fullest. We encourage others to explore all opportunities, discover possibilities, and research issues and concerns thoroughly; focusing on medical concerns, needed occupation and speech therapy, education, and balancing daily living with socialization and peer related activities. Become active in organizations, support groups and advocate on behalf of your loved one and other individuals with disabilities.
Reading about Jared’s journey so far and at this point in his life, I hope, will inspire you and affirm to you that your loved one is capable and expects you to help him or her achieve based on their abilities. Even as an adult, when Jared leaves home each day, he still says “Love you Momma, Love you Daddy,” and we tell him we love him. We are grateful that he has a structured environment to learn and grow along with many supports that were once nonexistent for individuals with disabilities. As we grow as a family, we continue to feel God’s love and protection
over our lives.
Deborah and Robert Giles