In the News
AND A CHILD SHALL LEAD...
Boy's autism compels mother to find way into his world, then help others
BY ANGELA PATTERSON
Imagine if you spoke to your child every morning, and he or she acted as if you weren't there.
Imagine if you placed a hand on your child's shoulder, and he or she began to scream and flail uncontrollably as if you'd hit the child.
Imagine waking up one morning, only to realize that your child has changed into a different person virtually overnight.
This is the reality of parents who have a child with autism , a developmental disability that often impairs social and communication skills. This was the reality of Sequoyah Hills resident Mary Donnet Johnson; her son Pace was diagnosed when he was 2 1/2. Determined not to let the disorder define the life of her son, husband Rick and daughter Mary Margaret, she began to seek answers. Through knowledgeable individuals, and a lot of trial and error, she was not only able to put Pace in a regular classroom, but help him to become a prized member of his school community.
Having had such success with her own son, Johnson is now sharing what she's learned with other parents of autistic children. A writer by trade, Johnson authored two books and has started a publishing company, Merry Pace Press, which has a Web site at www.merrypacepress.com. She and her "team of experts" are currently hosting workshops around the state, helping other parents and teachers learn how to effectively deal with an autistic child. Her next workshop is 9 a.m.-3 p.m. Nov. 5 at Bearden United Methodist Church.
Johnson feels confident now that she can help other parents cope with this disorder. But in 1997, she was the one who felt she wasn't up to the challenge. Little did she realize that in seeking answers for Pace, she'd learn some valuable lessons as well.
"It was like the child I knew died"
Pace was diagnosed in the summer of 1997, but Johnson said she remembers changes as early as 15 months.
"At about 15-18 months, he went into a complete social disconnect," Johnson said. "He withdrew into himself, appeared deaf, wooden. He suddenly would not respond to his name or interact with anyone, even with family members. All language ability he had up to that point disappeared. He became prone to violent tantrums over nothing."
Both Johnson and her husband felt they were unable to cope with the diagnosis.
"To be honest, we were both suicidal," Johnson said. "I knew I didn't do anything wrong during my pregnancy, and I'd had a healthy child. Fifteen months later, he was gone. It was like the child I knew died. Only he didn't -- he was still there, acting so strange and so uncomfortable. I thought I couldn't cope with it. My husband and I admitted how we felt to one another, and made a decision right then that leaving the children behind was not a choice. It was then that we started looking for answers."
Pace didn't begin receiving treatment until later that fall. Several doctors tried to test him, but Pace refused. It wasn't until Pace met and tested with school psychologist and autism expert Dr. William Allen that he began to make progress.
"What's key for the child is a team approach"
The time was nearing for Pace to start school, so Johnson worked with a then-University of Tennessee graduate student, Gina Burch, to create a program that would prepare him to enter a regular kindergarten classroom. What they formed was a series of activities that the child completes, and then he uses pictures to describe what he saw and learned during the activity. That program would become her first book: "1, 2, 3 Get Ready: A Fun Summer Program to Help the Special Child Prepare for Regular School."
When Pace started kindergarten at Rocky Hill Elementary School, both Johnson and Pace found a welcoming environment where everyone wanted him to succeed.
"When Pace got into school, the kids were very supportive," Johnson said. "We noticed that all the kids wanted him to succeed, too. What was surprising to me was how supportive the parents were. Many of them told me they were grateful for Pace's presence in the class because it gave their child the opportunity to learn that people are different, but they should be kind and patient because everyone has their place in this world. What's key for a child is the team approach, where everyone who deals with your child on a daily basis -- from teacher to custodian -- wants to see him succeed. With the team approach, you have to be fearless and creative, acknowledge challenge, not be afraid to make mistakes, forgive any missteps and celebrate every win."
"One little boy affected all these people"
After Pace completed kindergarten, Johnson and Sherry Corden co-wrote a second book: "Beyond Words: The Successful Inclusion of a Child with Autism ." The two shared experiences and practical suggestions on how to integrate an autistic child into a regular classroom. Allen wrote practical suggestions and classroom exercises to round out the book.
"We had a party when the book was done, and we invited everyone included in the book -- 120 people," Johnson said. "It was amazing to see that one little boy who didn't talk affected all these people."
Pace is now in the fourth grade at Rocky Hill, and is an important part of his school community. Although he still doesn't speak much, the children have gone out of their way to befriend him and help him when he needs it. After witnessing Pace's success, Johnson took the knowledge she'd gained and began to help others. She's appeared at several teacher training sessions and state autism conventions, sharing her practical solutions with others.
"I'm happy with promoting the message of integration on the elementary level," she said. "The next hurdle is middle school. I'm sure there will be another book in my future."
But what is most amazing to Johnson is not only her son's success, but also the effect he has on others. She believes there are some realizations she may never have come to had it not been for this diagnosis.
"A friend of mine once said, 'The world breeds what the world needs,'" Johnson said. "Is it possible that these children with autism , who have such a difficult time connecting to other people, are here to create an opportunity for the people around them to connect in a way that is more powerful than fax machines, cell phoneor even the Internet? In his own quiet way, Pace has empowered everyone around him to work together to make things better for every child the old-fashioned way -- by looking each other in the eye and joining hands."
Review by Pat Mervine, SLP
Beyond Words is a 173 page, soft cover gold
mine for parents and educational teams who are learning to deal with
inclusion. This unique book is a collaboration between the mother of
a non-verbal kindergarten child with autism and his kindergarten
teacher, with commentary and suggestions from William Allen, Ph.D.,
on all aspects of inclusion, including: The First Day, Getting to
Know You, Finding a Way to Work Beyond Words, The Social Maze, A
Break in Routines, Environmental Issues and Sensory Strategies, and
Making Friends and Moving On.
Rather than presenting a single point of view on inclusion, the experiences of the student, his mother, educational team, and classmates are very personally related through direct quotes under headings "what other parents thought," "what the school staff and professionals said," "parent/teacher dialogue," "the teacher's perspective," "what the other children felt," and "the parent's view." These quotes are most illuminating, and reflect diverse insights and perspectives that all add up to the complex little boy named Pace as he enters and moves through kindergarten with neurotypical peers. Interspersed with these perspectives are wonderfully descriptive, functional tips from Dr. Allen on how to handle many challenging aspects of autism, and illustrated suggestions from the parent and teacher on the use of visual supports for communication, routine, and behavior.
I highly recommend this book for all parents and special educators who are getting involved with inclusion for the first time, or who are looking to improve existing inclusion experiences.