Parenting a child with special needs demands constant attention, flexibility, innovation, creativity and problem-solving skills. However, the rewards are amazing. Let me tell you about my son.
Devon Tyler Konyha is 22 years old. Devon has Autism Spectrum Disorder, a behavioral disorder that usually appears by the age of three years old and is a lifelong condition. Autism Spectrum Disorder is a developmental disability affecting about 1 percent (or 1 in 50) of all children born in the United States. Autism Spectrum Disorder affects the central nervous system of the brain and an individual’s verbal and non-verbal communication, understanding of language and socialization with peers. Also, sensory experiences are amplified (touch, hearing, smell, taste). So individuals may have specific reactions to certain types of clothing, perfume, food, etc., http://www.autism-spectrum-disorder.com/autismsymptomschecklist.html
His special abilities have equipped Devon with many natural gifts, mainly the gift of unconditional love, empathy and hope. He is a natural healer and can immediately spark love and empathy just by entering a room. He is genuinely kind and considerate, a remarkable example of what we all strive to become. Devon dreams of traveling abroad and his goal is to be an Anthropologist or to join the Peace Corps. He dreams of travel to explore other cultures to hear their stories, conversing, touching and speaking to our global communities, our brothers and sisters, aunties and uncles and elders we have yet to meet.
Our dear friend and professional colleague D.G. Mawn of CSII/Intuitive Synergies writes, “Devon is a deep thinker and supportive man who takes in the energy around him and respond to this energy in a manner that is thoughtful and truthful. He is comfortable with whom he is and welcoming of the change he is about.” Devon’s passion and understanding of natural science and physics, and mysticism (Cultural Anthropology) defines his spirituality. He understands the importance of language and sacred rites of passage, customs and unique expressions in different parts of our world and the importance of embracing and demanding diversity in our lives. Within this same soulful and wise being is a young and enchanted child that believes in magic, miracles, dragons and romance. One moment we are singing Disney tunes and the next moment watching the History Channel, Ancient Aliens, contemplating whether aliens influenced our human experience and culture.
While we have celebrated many milestones over the years, the biggest triumph to date was his graduation from Center Academy in May 2010. I worked three jobs to pay the tuition for Devon to receive the specialized educational and academic instruction that he needed. We invited family and friends from three states. Devon had 68 guests attend his graduation ceremony, the most reported in the school’s history. So many individuals wanted to be a part of the celebration and give Devon back a few of those loving and supporting moments that he so generously shared with them through the years.
While this was a very proud moment, Devon, as a whole unique and rare individual, makes me proud every day. I tease him at least once a week that he is not of this earth and to have patience with me, his mother, and “mere earthly mortal parent.” Devon is an advocate for animals and humanity, finding ways to alleviate suffering. He is a champion for those who are vulnerable, marginalized or oppressed. Once, I got a call from the Director of Montessori asking me to come to the office. Apparently Devon was involved in an incident on the playground that involved throwing rocks. I was stunned. Once everything was sorted out, Devon actually was shielding a young boy that was being bullied. That’s my Devon. He loves, accepts and protects all life forms. He naturally nurtures and heals those around him. Devon was not taught how to do this. He was born this way….I merely allowed him to be.
Parenting a special child has undoubtedly changed me for the better. Devon has taught me everything that I truly know (spiritual knowledge) about life. As his parent and guardian, I have been able to re-learn and question everything that I thought I knew. He has taught me how to effectively communicate. He has improved my ability to teach, to reach, to empower those without a voice. He has taught me how to empathetically listen. How to really hear someone when they are speaking. How to persevere and never give up. How to find hope when there is no immediate light present. How to find happiness and contentment in every day small wonderful things. He has taught me to advocate and educate our communities on social justice. He has sparked a willingness to serve others as a Servant Leader and bring forward hope and an awareness of how to live a “purposeful” and mindful life. He teaches me every single moment of every day how to love.
It has not been easy by any means, and we face challenges together every day. The greatest struggle that I face as Devon’s parent and mother is finding enough resources for Devon to have the highest quality of life possible. Without access to endless finances, it is difficult to locate adequate social and emotional support services that will assist Devon as he continues his transition into adulthood and independence. Devon is exceptionally capable, yet needs safe and supportive environments to role play and practice his social integration, executive functioning and independent life. The best resources that we have located range between $55,000 and $75,000 per year and have limited or no ability to seek financial aid.
For those parenting special children like Devon, I leave you with this advice. Parenting a child and young adult with special needs requires an active and everyday willingness to let go of what you think you know. To learn first and foremost from your child, their passions, their voice and their natural ability to express love and desire for harmonious safe and supportive environments. Never settle for mediocrity and average, demand excellence and never, never, never give up.
Jackie Griffin, MS, is the Vice President of Development for Operation PAR and serves as Executive Director for LiveFree! Substance Abuse Prevention Coalition of Pinellas County. She spends her career advocating for recovery-oriented systems nationally and contributes recovery peer leadership to Tampa Bay non-profits.