Christopher came into our family at a time of crisis in his own. Chris had been born with Autism and labeled as profoundly developmental delayed.
Christopher came into our family at a time of crisis in his own. Chris had been born with Autism and labeled as profoundly developmental delayed. He would spend the majority of his time isolated, frequently staying in a gated area to protect him from self-harm. He had no means of communicating with the outside world. He had received none of the early interventions now found so effective for individuals with Autistic Spectrum Disorders. If too many people were in a room he could not tolerate it and would leave the room. From reviewing his Individual Education Plans it was clear that Chris had not been given any structured education. At age ten, Chris’ younger brother developed cancer in both his lungs and his brain. His father and mother could not care for both boys while the brother was receiving chemotherapy. It was for this reason that my sister Rebecca and her partner Lisa chose to offer to have Chris come live with them. Both women were young executives on the rise but both were firmly committed to family coming first. Rebecca had studied special education at the University of Maine Farmington so she was the most likely candidate to leave her job and stay home with Chris.
This time frame coincided with my leaving the restaurant industry and going to work at a small not for profit agency in Maine that provides residential supports to individuals with Autism and Developmental Delays. I liked their strengths based approach and their firm belief in the possibility for change in the lives of those they served. Even with my training in person centered approach and the belief that limits are things we put on people based on our own fears, I was more that a little skeptical when Rebecca told me she was going help Chris connect to the world. It was with a touch of head patting that I said “sure sis”. I mean Chris couldn’t even maintain eye contact. How could he connect to the world outside? His own pediatrician stated that toilet training should not be attempted because it would be too frustrating for both she and Chris. Rebecca’s response “I don’t believe anyone has ever died from frustrations” to which both she and the pediatrician chuckled. What the pediatrician and I did not realize was exactly how indomitable both Sis’ and Chris’ spirits were. It took them eighteen months but Chris rose to the challenge thereby removing a major barrier to his potential.
My sister had read the book Son Rise by Barry Neil Kaufman whereby a mother helped her son with autism to reconnect with the world using a limited stimuli environment. She went to his world in order to build a bridge to her own. Rebecca would go into a small room with Chris each morning and would mimic his behaviors. Eventually Chris realized he could have an impact on what she did and started doing things to have Rebecca mimic him. She then worked with him to mimic her, thereby building their own bridge. It was then that she helped him to give name to the world around him. Names he could share.
Chris’ world began to expand. Rebecca realized that Chris knew his alphabet. He then started using flash cards to communicate. Four months after going to live with Rebecca and Lisa he joined a special needs team in Little League. There were ten total teams within the league, nine of which were for non-developmentally delayed children. On opening day one member from each of the other teams plays the team for special needs children. Many of the boys were interested in communicating with Chris and asked, “Why doesn’t he talk”. Rebecca and Lisa explained that he used flash cards to which one little boy responded, “Why don’t you teach him how to sign”. With repetition and hand over hand manipulation Chris began to get his wants and needs met through signing. I remember when Chris learned his first sign his second third sign and so on. I remember hearing of his first created word. Sis asked Lisa “Why is Chris asking for a Tree Bear” and Chris assisting them by going to the fridge and getting out a “Root Beer”. Chris is from the south. I also remember when Chris saw his father for the first time after learning sign. Chris’ brother’s medical needs had kept his Mom and Dad away for eight months. Chris was standing at that same fridge with his dad signing. His father asked Rebecca what he was saying and with tears in her eyes she translated “Daddy I’m smart.” They all had tears of joy as they realized exactly how amazing Chris was. Twelve years later he continues to amazes me. (His younger brother had a full recovery by the way.) He is one of the most “cool” people I have met to date. This spring my partner Eric and I went down to see them. I must admit that my signing is rusty at best but I try to keep up having been labeled “smart Uncle Lonnie” by Chris. I responded a couple of times as though I understood but I wasn’t following what Chris was signing to me. Upon more closely paying attention I realized he was testing me. He wasn’t signing anything in particular at all. He was busting on me. When I realized this and told him he burst out laughing. He and I both knew at that point who the smart one was. I pray I can continue to learn from him.
Lonnie Leeman, LCSW 03/01/05