Jamie with Connor "Redefine Success"
PHOTOGRAPHY BY RANDY BACON
We started down the parenthood road February 20 1993, the day Connor was born. Connor was a typical developing baby until a series of events took place. When he was 12-months-old we began to notice regression and had major concerns. He lost all his language and his motor skills slowly began to go away.
After trips to four major hospitals and universities, in1996, Kansas University had a developmental team that finally put a name to it, autism. With our only reference for this word being the movie “Rainman”, we set out on a journey to find help for Connor. By then our daughter, Austen, had joined the family, and together they would find a new way of life. Connor adored Ausy from day one and we believe she was the best (and most expensive therapy we could have purchased!)
After a diagnosis of profound hearing loss in 1999, Connor’s world changed again. Now we began to learn to communicate in sign language and visual mediums. This became a daily adventure. Try helping your child with his homework, but first you have to learn all the words for what he is studying in sign language.
The team of doctors and therapists we saw during those early years never really gave us hope for a great quality of life for Connor. He has autism and he’s deaf. Two worlds that can be isolating were rooted inside one little boy. We were afraid that people wouldn’t want to be around him and he wouldn’t want to be with them or even us. His life events have led us down an amazing, frustrating, joyful and at times heartbreaking path.
Today Connor is age 24. He has had an amazing educational journey at Logan-Rogersville school, filled with friends, great teachers and a lot of growth. Now, he lives at home with us. He stays connected with all the people from his school years with social media which has been amazing for Connor. It allows him to communicate with others with no interpreter and he stays connected with school friends, family and actually the entire world. You would never know but Connor knows more about pop culture and civil rights issues than most. He loves to learn!
We gave Connor a magna doodle as a child so he could write down his name and phone number if we ever got separated (remember this was before iPads or tablets). As parents it was a huge fear for us for him to not be able to communicate. But no one knew we put into Connor’s hands something that would change his life. Connor began drawing on the magna doodle. For enjoyment and to interact with others. Connor can draw anything and this ability has allowed him to connect with the outside world. Today he attends class at Art Inspired Academy and recently began to volunteer teaching young children sign language and all about autism. Sometimes we wish we could show those professionals who gave us no hope, Connor drawing to a large group of little kids and telling them about superheroes. In many ways he is just like every 24-year-old, collecting comics, checking out YouTube, playing basketball, golfing and bowling. He has chased his sister the last four years to events around the University of Missouri and loves her unconditionally. Daily, through communication issues, OCD behaviors and challenging interactions, we are reminded that our world is different. But, it’s our world! Ausy never has had a big brother like her friends did, but instead she has a big brother that has taught her about loving people and fighting for the underdog. Connor’s grandparents have been a vital part of his life and help our family in any way they can. Many times we needed this support but it was always embarrassing to ask. No one really knew/knows the challenges in our home but that’s ok. We want others to know the really great parts of who Connor is.
Connor cares about the small stuff! Even so much as caring for a dropped piece of candy in front of Cinderella’s Castle in Disneyworld. At the age of four, he would not leave the castle until he cleaned up the candy. His attention to task and compulsion to complete a task was often a challenge. When the task was completed he smiled and returned to the fun of the park.
Connor has taught us to care about small things, even things or people that are broken and others have forgot about. Sounds just like something Jesus would do. Connor has a caring and compassionate heart, something the professionals told us he would never understand. He is the first to go to someone when they are hurt, he is the first to say sorry when someone dies, he is the first to congratulate someone when they do something great. Connor is always concerned about the entire family and feels a lifelong connection to family members. Connor wants everyone to succeed and do well.
Now Connor is an adult and our world has changed again. It is different when you are working with a child with a disability, but it’s a whole different role as an adult. While other families are becoming empty nesters we are learning to deal with adult medical issues and what kind of life will Connor have as we all age and someday as parents, we will be gone. Over the years two phrases came out of our daily lives that might be helpful to others. Clay has always said Connor changed our definition of success, and actually we like our definition better now. So, we say “sometimes you have to redefine success”. The adventure of life teaches you what is important to your family and what is merely just stuff. We also say “sometimes you have to be totally willing to fail”. This may seem like an unlikely statement to use as a guiding principle. However, we found that with Connor we had to try things and be willing to fail, to see how the event impacted Connor or if it would help him. Who takes a deaf child to a music concert? Or to a whole list of other events that we had to try to help Connor experience the world? We would often leave something, Connor crying, us upset, other people annoyed or angry at us, silently judging what they thought were our parenting and say “we are the dumbest people ever”. Yet, the next week we would try and promote typical experiences for Connor to be a part of. As we continue to create and expand the world for Connor we again set out on an unknown journey to what the future will hold. Together we will all face the new road ahead, redefining success and being willing.
Story Update
Conner received the The Mental Health Champions’ Award for the state of Missouri on August 12, 2019. This award is presented to three individuals annually – an individual living with mental illness, an individual living with developmental disabilities and an individual in recovery for substance use disorders. The award recipients make positive contributions to their community, exemplify commitment and vision, and their actions have increased the potential for independence in others with similar mental health conditions.
Conner received the award in recognition of his volunteer work with Abilities First and his dedication to growing the message of inclusion.
Conner and his family participate in Art Inspired Academy, a program of Abilities First, that provides an inclusive experience for people with and without developmental disabilities to participate in creative arts like theater, music, movement, and art, as well as pre-employment classes. Art Inspired Academy uses the arts to teach self-expression and help people gain life skills and build relationships. Abilities First promotes inclusive opportunities for people with developmental disabilities. By ensuring that people have opportunities to use their abilities, we can make our community better for everyone. Abilities First uses public and private funds to support the choices of individuals with developmental disabilities in Greene County to live, work, play, be active, and productive in meaningful ways for our community. For more information about Abilities First and its programs, go to www.abilitiesfirst.net or call 417-886-0404.
Abilities First operates five programs to support and create community opportunities. We offer support coordination for people with developmental disabilities of all ages through First Steps (birth – 3 years) and The Next Step (3 years – over). Art Inspired Academy, to provide an inclusive experience for people with and without disabilities to participate in creative arts like theater, music, dance, and art. We use the arts to teach self-expression and help people gain life skills and build relationships. Abilities First has two retail businesses. Inspired Boutique is an upscale resale shop with women’s clothing, accessories, furniture, and antiques. Art Inspired is a retail store and gallery highlighting furniture and home décor items created from recycled paper and artwork from visiting artists and Academy students. Both stores offer competitive job opportunities in inclusive work environments