This is a post by Denise Hines, Corporate Finanace and Human Resource Officer of the Washington State PTA and mother of Ian, a young man with autism. Denise shares the story of life with her son and how My Job Chart, a new partner of Autism Speaks, has helped improve his independence and life skills.
From the moment our little guy was born, it was obvious that his road was not to be an easy one. With a beginning Apgar score of 1, our precious boy started his fight for survival from the moment the doctor pulled him from my womb. The years to come would be filled with numerous surgeries, medical tests and pain for our sweet Ian.
I remember the day vividly. The words seemed so cold and so clinical…”I’m sorry Mrs. Hines. I believe your son has autism.” In that one moment, I felt our world being turned upside down. I didn’t know much about this new diagnosis, except to know that it felt so much different, so much more permanent and life changing than all the other multitude of labels that had been assigned to my little Ian over the last year.
That night, after we tucked Ian in to bed for the night, Mike and I sat together and worked at wrapping our heads around what was happening to Ian. We had been taught how to biblically raise a child without struggles, felt fairly confident that we could, with God’s help, raise a child with severe medical needs, but felt helpless to know how to care for a child who was slipping away from us mentally and emotionally. We believed strongly, however, that it was God that had created Ian exactly as he was and it was God that would help us face this new challenge and raise Ian in a way that brought Him glory and praise.
After studying God’s word, we decided that all we could do was raise Ian as if he had no challenges, but in a creative way to help him overcome and to address his challenges. Life from that point forward became an experiment on how to reach our little boy and draw him back to us. Our lives became a beautiful mix of failures and precious small victories!
Our little “aha” moment came one day when I was literally at the end of my ability to be creative and continue on. In my desperation, I gently held onto Ian’s face and tried to get him to look at my eyes. After what seemed an eternity, for just a second, his eyes met mine, and I could see once more the little boy that used to be. My heart melted as I realized what I had stumbled upon. If I could get Ian’s eyes, even for a moment, then I could get his attention.
I can assure you, this is where the work began! Hours were spent by both Mike and I, working at training Ian to “give us his eyes.” The reward was eternally worth the effort that it required! The changes were not overnight, nor were they consistent or long lasting, but it allowed us to communicate with Ian where before there had been no communication. In the precious moments where we were able to get his eyes, we were able to train our little one how to live in this life, with all its difficulties and pain knowing that God and God alone would sustain him.
Throughout the years, we were able to discover and develop tools that helped us not only reach Ian but allow him to reach out to a world that seemed huge, painful and frustrating to him. One of the tools we found to help was My Job Chart. It was so awesome to watch Ian begin to make the connection, to begin to understand, on a limited basis the concept of cause and effect. With this tool, we were able to give Ian what he viewed as most comfortable and safe, routine and order, while at the same time teaching him concepts that would help him be able to achieve the independence he so desired.
Looking back over the last 19 years, I can see that God has taught Mike and I so much through our work and time with Ian! Neither one of us could imagine life without him! I would trade a million lifetimes with a healthy child with no issues for even one moment with our precious Ian!