Zane couldn’t tell his parents, Zach and Jennifer, what hurt when he was sick. If he wanted something special for a snack, he didn’t have the verbal skills to let them know. They had never heard him say the words “I love you.” Although Zane had what his mom calls “Zane language” utilizing gestures and signs, he was not verbally sharing words or phrases with the world. For a while Zach and Jennifer were not overly concerned with Zane’s lack of speaking, in fact, Zach did not begin to communicate verbally until he was three years old. “We had justification for denial,” said Jennifer. “We weren’t surprised by it.”
By the time Zane turned three, his parents began to question if there was something wrong. He had lots of words according to Jennifer, but he did not use them to form sentences or to communicate. Other red flags included his aversions to certain clothing textures, a short attention span and an extreme dislike of crowds. Again, Zach and Jennifer were not too worried as they share some of the same characteristics.
Scared of attaching a label to Zane, Zach and Jennifer waited to have him checked for developmental delays. They were apprehensive, afraid that if Zane was diagnosed with autism, people wouldn’t be able to see beyond the label to find out what a special child he is. Jennifer’s perception of institutions that provided diagnoses included specialists who aimed to categorize individuals. “The problem is, humans are not that neat and tidy,” she posted on her website blog*. “If you have ever experienced the negative aspects of labels, you are going to be more sensitive to how it can steamroll over your life and therefore, much more resistant to allowing that in your life.” Zach adds, “We were concerned that a label would put limits on him. We didn’t want to change who he was, we just wanted him to be able to navigate his world outside of home.”
In addition to his lack of verbal communication, Zane’s behavior in public was erratic. He wasn’t coping well in Sunday school or at YMCA classes. A trip to the grocery store could easily turn into an entire afternoon or evening event, complete with tantrum and tears.
In April 2006 when Zane was four years old, after much contemplation and the encouragement of family, Zach and Jennifer decided to have Zane evaluated. Following a visit to a local screening program they were referred to Heartspring for further evaluation.
Despite their hesitation, Jennifer and Zach agreed that Zane should begin speech-language therapy services at Heartspring Pediatric Services in May 2006. They were pleasantly surprised to find caring staff members at Heartspring who were not judgmental and treated Zane with respect. “Everyone treated us like people,” said Jennifer. “They approached us like ‘this is ok.’ They didn’t take offense to his actions or behavior; they looked past the social inappropriateness. Heartspring is a place where we were finding a sense of normalcy.” Subsequently Zane began occupational therapy in July.
In December, Heartspring’s developmental pediatrician diagnosed Zane with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS). PDD-NOS is a diagnosis under the Autism Spectrum Disorder umbrella. A classification of PDD-NOS is based on deficits in social interaction, imaginative activity, verbal and nonverbal communication skills, as well as a limited number of interests that tend to
Children with PDD-NOS often tend to zone out while participating in various activities. Occupational therapist Elise Malmberg works with Zane to wake up his senses by placing weighted blankets on him while he swings in the physical therapy gym. “This often helps kids to calm their bodies which in turn helps them to better interpret incoming information from their environment,” said Malmberg. “(This also) allows him to display higher levels of focus to his tasks and also increases participation.”
In addition to keeping Zane more focused, much of Malmberg’s time is centered on assisting Zane with a variety of motor skills. Activities that come naturally to many children must be taught step by step to Zane, including writing, dressing, brushing his teeth and doing jumping jacks. “Although Zane has deficits in several areas, he also has many, many strengths,” said Malmberg. “He has strong visual perception skills, which has been a helpful tool in learning new things. He’s always surprising me with his abilities and thinking patterns.”
Speech-language pathologist Carrie Cherney saw great potential in Zane during her initial evaluation last year, but she had not anticipated the drastic improvements that have come as a result of therapy at Heartspring and at home with his family.
Cherney is excited about Zane’s increased communication skills. “In a short amount of time, Zane went from a little boy who showed little interest in interaction with others to a little boy who chose to play a game with me first before choosing any other toy or activity in my therapy room,” she said. “Zane was beginning to understand what communication is and how he could use it to enhance his life.”
Since beginning therapy at Heartspring, Malmberg and Cherney have been extremely supportive of Jennifer and Zach as well. “Zane and his family have been a pleasure to work with and I not only consider them clients, but friends,” said Cherney. “They are intuitive, insightful, have the best interest of Zane in mind and always work very hard to give Zane everything he needs to be successful.” Malmberg said, “Zane has a wonderful family who is always eager to try new and different things to help Zane perform at his highest level.”
His one year old sister Zora also accompanies Zane to his weekly therapies.
Looking back over the past year, Jennifer and Zach can hardly believe the difference in their son. “Seeing his growth gives me hope for the future,” said Jennifer. “His improvement is exponential,” said Zach. “He’s grown by leaps.”
On October 20, 2006, as Jennifer was placing Zane in his car seat after therapy, she completed her routine of kissing him on the forehead and saying “I love you.” On this day, for the first time ever, he echoed back, “I love you.” For Jennifer, “The moment will forever be seared into my memory.”
* A blog (short for web log) is an online journal where entries are made and displayed in a reverse chronological order.