According to Autism Speaks, one in forty-five children in the U.S. have been diagnosed with Autism. When Sandy Weber's son Erik was diagnosed with Autism, information and services were limited. Yet Sandy championed and rallied for her son, making it through the darkest hours. Her son Erik went from being non-verbal autistic, to being a very articulate Attorney graduating from California Western School of Law, and passing the bar on the first try. His mom Sandy is a wealth of information and holds key information to unlocking some of the communication and education barriers that are traits of Autism Spectrum Disorder.
Ground Zero
Sandy, "The original diagnosis given to me by the Children’s Hospital Diagnostic Specialist was that Erik was retarded, autistic, and would never be cognitively older than 18 months. He arrived at that seemingly accurate diagnosis after several hours of physical testing. Erik could not do basic functions with toys, walk on a balance beam, toss or catch a ball. At three and a three and a half years old, he was not potty-trained, could not point at objects, make eye contact, or attend to anything presented to him. Erik has the“regressive” form of autism, which appears around two and two and a half years of age, unlike the “complex” form that is apparent from birth."
Erik received speech therapy at Children's Hospital, and some occupational therapy, but no other services were available at that time. So Sandy did something inventive. "I began videotaping him at school, at home, at family outings, and then playing them back to him, commenting on his behavior. I realized he was a visual learner! He had a positive reaction to music, so I made up little jingles to tell him what we were doing next. I had to prep everything ahead so that he would not be triggered by change. When I realized he was objecting to going anywhere in the car that was different, I started calling out “Star Flag, Bear Flag” on all the buildings along the route. It calmed him down because he would watch for them. Any place new usually had a flag! That was my “transition piece.” It even worked when he changed schools!
Sandy continued videotaping speech therapy sessions in the early 90's with her camcorder. Replaying those tapes made Erik see himself in the third person. Teachers at Erik's school put his schedule on the board so that he would be less anxious. He was behind in his handwriting so he was allowed to type on a computer instead. According to Sandy, "His language was not progressing very fast, and his handwriting was slow and difficult, I insisted he learn to type on the computer instead. At home, my refrigerator was full of magnetized PECs (Picture Exchange). There were labeled line drawings for places to go, things to eat, and several that illustrated emotions. If he wanted a food item, he handed me the picture. If we were going to the store, or to school, I would point to the picture and sing a little song to get his attention."
Sandy admits there were many tough days. "There were times when I would sit on the side of my bed facing the window crying, and asking God for guidance and to help me find “windows of opportunity” so that I could help him maximize whatever potential might be there. His screaming was so intense that I was home-bound most of the time. When Disney movies were playing on the TV, Erik would watch intently and could sing along with the songs on the tapes. That lifted my spirit."
Rock Bottom
At 5 years old, with seemingly very little progress being made, the therapist at Children’s Hospital advised me to start looking for an institution for him to live out his life ~ “He is not going to get any better.”
A breakthrough came from Erik's Pediatrician when Erik was just five-years-old. Sandy admits, "He told me to try giving credibility to Erik’s feelings in a way that he would realize that I understood what he was feeling. When we went home that day, I looked at the emotion PECs on the refrigerator and decided to try. The inevitable meltdown happened. Erik was screaming at me in the kitchen doorway next to the refrigerator. I looked into his eyes, pointed to the“angry face” in the picture and said, “Oh, you are so angry. I am sorry that you are angry.” He suddenly stopped crying and just looked at me for a few minutes. That was my “remarkable moment!” After that, the screaming lessened, his behavior changed, he began to try mutual communication, eye contact was better. I continued to use the emotion pictures so that he would realize I was trying to understand his needs."
Sandy also advises parents to let go of their image of "the perfect child," and embrace the one they have so that their child can reach their full potential. They also have to clear out their own childhood baggage so that they do not unwittingly project that onto the child with autism. Parents tend to feel shame or guilt, as if they have done something to cause the autism. They have to let go of that! Over the years, helping other parents, I have found that the child with autism reacts best to parents and caregivers who use a firm, yet nurturing, voice quality; speak slowly and calmly; this inspires compliance. Common technique includes, “First do this, then you’ll be allowed to do that.” She also recommends consistent interaction, relationship building, mirroring the child, acknowledging their feelings, and giving words to expressed emotions will unlock the door. Sandy adds, “basic trust” permits the child to respond to a wide range of emotions from which he/she will refine the capability of mastering reality. “When the child finds his/her bids for comfort are met with sensitivity, the child develops a sense of security and is more likely to open up and trust."
Sandy states, "Autism is never cured. However, Erik is a shining example of someone who is defying the odds and using his autism as a strength rather than a
weakness in his life."
