The Greatest Gift

Mike Barbour is an Assistant Professor of Nursing at Florida State University. He loves to travel, has a love for theatre and is the father of two. I met Mike in his role as Dad — I’m friends and colleagues with his daughter Amy. I had the pleasure of sharing time and space with Mike when he and Amy’s brother Ian came to visit her home in Hawaii. What a pleasure it was to see this family in action during their visit. Ian is celebrated by this family for the man that he is — funny, engaging, energetic and a person with autism. Mike shines in his role as Dad with both Ian and Amy.
— Patricia Wright

The Greatest Gift

My son Ian is 21 years old. With Father’s Day fast approaching, I reflect on how life with this wonderful boy has affected me. Ian lives with autism and Fragile X Syndrome. His IQ is extremely low, so his understanding of Father’s Day as a holiday is quite limited. In fact, excessive talk, planning, etc., about special days makes him extremely nervous. I choose to keep it “low key.”

When Ian came into my life, I was in denial about his condition. As a registered nurse, I was trying (pretending) to champion the way for meeting his needs. As a professional, I found myself to be totally inadequate in securing the resources he desperately needed. My wife proved her strength during this time as she opened doors for early intervention opportunities. In addition, Ian was blessed with a 7-year-old sister, Amy, who adored him just because he was her younger brother. Ian’s strong bond with Amy helped him to develop and achieve milestones as much as anything else we provided for him. The bond they had was truly amazing! Amy later chose to make special education her life’s work. She completed graduate school at Florida State University and now works in a school on the island of Oahu.

In the early years, I sought various sources to help me cope and learn. One of the best things I found was an essay written by Jim Sinclair. The essay, entitled, “Don’t Mourn for Us” was published in “Our Voice,” the newsletter of Autism Network International, in 1993. I just needed to accept Ian for who he was, and Jim’s poignant writing allowed me to view the world differently through Ian’s eyes. As Jim collectively described those living in the world of autism, “We are alive. We are real. And we’re here waiting for you.” Reading Jim’s essay, the works of Temple Grandin, and others, helped me rethink my life. This newly-discovered consciousness permitted me to really explore the world of such a remarkable, funny, loving, unique, and interesting young man who was a part of me. The journey has completely changed and enhanced my life.

Ian has given me the perspective to focus on what matters most — every day and every minute. Through him, I have been able to polish my relationships with other people, become quite a good cook, feel music with passion, raise beautiful plants, and relax. Through the years, we have done so many things together. During some of our excursions and travels, I discovered that in addition to his love for sports, he also enjoyed the opera. I remember watching a tear roll down his cheek when he heard a baritone sing his favorite piece, Nessun Dorma (the finale from the Puccini opera, Turandot). I’m sure he thought the piece was performed solely for him. Ian has shown me that, sometimes when the sky is gray, we can all feel better by eating a cheeseburger and just “chilling out.” He is filled with joy and it is highly contagious!

This year, Father’s Day is very special because Ian graduated from high school. He will still spend the upcoming year in the school system working on possible job placement. What will happen after that is uncertain, but he has developed and improved his skills tremendously in the past year, so I feel very positive about his potential. For the actual Father’s Day holiday, I will spend the weekend with him and just enjoy every minute. I’ve been able to achieve and exceed many goals in my life. But without question, being “Dadzo” to Ian is the greatest Father’s Day gift any man could ever receive.


 

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  1. Mike Barbour Says:

    Gail,
    I appreciate you sharing your son’s success story. I sincerely hope that more and more families will manage to be forward thinking with their children and stay positive. None of us could possibly predict the potential that may be locked inside these kids. Thank you so much for your comments. It is wonderful hearing from you!!
    Mike


  2. Gail Heyman Says:

    I love what Mike Barbour has to say about living with fragile X. As a family with fragile X, we, too, know both the joy and the of acceptance. Our son has graduated high school, has a job at Publix and lives independently. Who would have thought that his future would be so bright?


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