I’m not implying any medical claims and I’m by no means claiming to be an expert in autism or deafness. But what I can say I know for sure are the experiences I have come to know over the years from being Julia’s mother and living in her world.
Julia was diagnosed with hearing loss at thirteen months old, I was devastated. I remember holding her in my arms in the doctor’s office waiting for him to come back into the room with the audiological results. He was a very compassionate and peaceful man. For him to tell me Julia had hearing loss was almost as difficult for him as it was for me to hear it. Even though he was as gentle as he could be with the news, I felt like someone had picked me up and thrown me against the wall. From that moment forward I knew our lives would never be the same.
The turmoil of the emotional rollercoaster was terrible. I was mad at myself, my friends, the doctors, the world, and even the Lord above. I couldn’t understand WHY my first and only born child had these challenges. Was it something I did, something I didn’t do? There were even days I didn’t care if I took another breath no matter the cost. But I knew I had to be strong for myself and for Julia. When Julia started in the educational system, I was still asking myself, Lord why her, why me I don’t understand. It’s not supposed to be like this. Little did I know this miracle of life blessed to me was as exactly as it should be.
When Julia was in Pre-K I went to a parent meeting with other parents who had children similar to Julia and who were also seeking answers. Her teacher at the time facilitated these each month and it was in this particular meeting I was able to tell my story for the first time without crying. Afterward, a mother came up to me and said, “thank you for sharing your story it has given me hope that there is light at the end of the tunnel.” As I left and walked to my car, I felt a peace come over me and a light bulb goes off in my head and an inner voice whispered, “ THIS IS WHAT YOU ARE SUPPOSED TO DO”!
As Julia went through the grades it came time for her to transition to Middle School. She was placed in a classroom with 16 students with varying exceptionalities. Her behavior was becoming difficult to handle. Her teacher at the time was the only person in the entire school who could communicate with her in her signed language, so you can imagine her frustrations. Although we used sign language to communicate with her at home her behavior was carrying over from the classroom. I couldn’t understand and I became frustrated in finding answers.
In January 2002 we packed up everything we owned, and came up the road with only our last paychecks in our pocket, we had no job, and we really didn’t know where we were going to stay but we knew we had a roof over our heads. Some friends and family thought we were crazy, but we knew we had to do this for her the school was waiting. We took a huge leap of faith and I don’t mind telling you I personally was scared to death. My husband tried to comfort me the best he could, but at the same time, we both felt a sense of calm as we stayed focused on the goal, which was Julia, getting to where we needed to be and getting her enrolled at The Georgia School for the Deaf.
Once Julia started attending school, her behavior escalated for a short period. Why? Because we have to keep in mind that this was the first time Julia had been exposed to a 100% signing environment so her mind was overwhelmed. The visual language her mind was starting and needed to process was everywhere. Once she started being taught in her language the behavior I just mentioned was going away, at least the part associated with not being taught in her language previously. Once this was eliminated that’s when we saw autism.
Autism is a lifelong communication disability that impacts language, social interaction, and access to life opportunities. Julia’s needs may not end and she will never stop learning. A better quality of life allows Julia to reach her own dreams and desires, afford her experiences outside of her own box and allow her to be engaged in meaningful activities to continually grow her mind and spirit. She can be more able to give back to others and be a contributing member of her community.
Julia graduated in May of 2011 from The Georgia School for the Deaf with a diploma, the Ray A. Kroc Award, and a Spirit Award. But, sadly, too often graduation doesn’t lead to the start of successful adulthood, rather it’s the end. The end of learning, the end of access to friends, the end of social and vocational opportunities, and the end of life-enriching activities. This will not be the case for Julia, she has a lifelong team component allowing her to overcome these obstacles by continuing to nurture, heal, ground, and focus her mind, to improve the growth of her abilities while diminishing her disabilities.
Everyone benefits from the opportunity to spend time in activities that bring joy. We nurture ourselves by balancing our lives; we find happiness and fulfillment with a steady diet of work, growth, and play. God is the light at the end of our tunnel. We no longer have to worry about Julia’s dreams and her having a job, we no longer have to worry about the support system for Julia going into the future, and we no longer have to worry about her quality of life. Through God, we now have balance, and peace, as he continues to answer so many prayers for our family. We are more positively charged going into the future regarding Julia’s future and quality of life than we ever thought we could be.
In closing, I’ll say this….. Each of us is given an angel, guided by His Love, Glory, and Grace. Accept His gift, listen to the whispers no matter how faint they may be, and may the journey of each day bring peace and strength to all we do in God’s name….. AMEN!
~Kimberly McGuiness, Julia’s mother