When Mary Ann Puckett's son, Stephen, was diagnosed with early childhood autism, also known as Kammer's syndrome, his family's life was altered when they began their journey of autism.
Later, a secondary diagnosis for Stephen was a severe seizure disorder called Lennox-Gastaut Syndrome. LGS is a progressive form of epilepsy.
"I have autism: Who will be my voice?" It is the story of a mother's search for answers to the problems that arise when she lives and raises a child who works at the lower end of the autism scale When Stephen arrives at each obstacle, Mary Ann tells how he and how he those around him are affected. He also shares tools he has found that help him to the next stop on this journey called life.
"The uncertainties of this life are a fact, but when you have a disabled child, the intensity of this uncertainty is infinite." Puckett said.
Stephen exhibited the 17 characteristics of autistic behavior, but at that time autism was not quickly diagnosed by physicians. Puckett shares with readers that, to this day, Stephen's functioning is still very limited and his cognitive level is still around five or six years.
A WORLD OF ITS OWN
Stephen made little eye contact from a very young age and seemed happy to be alone in his own world. Her mother discovered that she acted positively with music, and when he was one she started playing all kinds of music for him, from classical to popular and country western.
"I started playing a series of records for him from a phonetic program called Play & # 39; n Talk," said Mary Ann. "When the music started, Stephen would stop what he was doing and listen carefully."
At age six, Stephen started talking. His conversation was repetitive in nature and to this day has not changed.
Watch all the court programs that are on television every day, and Judge Judy is your favorite television show.
His favorite musician is George Strait and he has attended two of his concerts.
Stephen, like many children with autism, literally interprets what is said to him. He received special education services that include occupational, physical, and speech therapy, but to this day Stephen can not tie his shoes, shave, comb his hair, and bathe without help. Your limited dexterity and motor coordination assure you that you will depend on others for the rest of your life.
AUTISM & # 39; S UPHILL BATTLE
Puckett's son is now 35 years old and not only shares the difficulties that parents have in obtaining help from doctors and hospitals for their children, but also of school systems, therapists, dentists and other professionals.
She asks: "Why do families like ours have to keep fighting to get what our loved ones need?"
In her book, she talks about what she believes are her parents and advocates for autistic people need to win some of these battles.
Urge readers to consult with their doctors before following any of the advice they give on supplements and food options. Puckett uses the book to raise awareness about vaccinations and better training for the police and the first responders when they are called to help.
She and her husband, Tom, have discovered that the journey of autism is very expensive, and emphasizes one must confront it with humor while telling stories of how humor has helped them along their journey.
NEED FOR ADVOCACY
"I assume that the reason for such limited resources on autism in the early 1980s was the smaller population of children on the spectrum, perhaps because it was they diagnosed fewer children, "said Puckett. She shares how children with autism have constant stimulation of the five senses.
Before the movie "Rain Man" in 1988, most people had never heard of autism, Puckett said.
"Stephen was about seven years old before I finally met another mother who had a son, like my son, with autism on the severe end of the spectrum," he said
. From this moment, Puckett learned about the early intervention, existing therapies including applied behavior analysis (ABA) and social histories, as well as resources that the family could have access to for Stephen. He talks about vaccines in the 1980s and the resulting effects on Stephen.
Puckett shares that not only does autism consume physical force, but it also affects one's mental stamina, which makes it difficult to think clearly.
Share how doctors' well-intentioned but inaccurate advice led to sleepless nights, and how their second child, born two and a half years later, suffers from post-traumatic stress syndrome as he is awakened each night by his brother's nightly tantrums . "
AUTISM: A FAMILY DISABILITY
Autism is a family disability that involves psychological pain and financial stress, Puckett shares. Parents and caregivers must learn to adapt and face the challenges of autism.
One of the biggest challenges was when Stephen was incarcerated due to the lack of knowledge of medical personnel about the care of an autistic patient with seizures. The drawback was that he was taken to jail from the hospital. Other times he was taken to a psychiatric hospital when his aggression, which was always related to his convulsive activity, could not be controlled.
"People with autism are valuable," shares Puckett, "even with his challenges, Stephen shows great depth and concern for others."
She said Stephen has a sense of humor and shows consideration for others.
Puckett emphasizes that funding is the main obstacle to getting adequate care for someone like Stephen. She adds that maybe someone outside the autism community should present funds, ideas and resources.
"Fortunately, the continued advocacy of raising awareness for autistic children will make that happen," Puckett said. "As a parent, you are the best advocate and voice for your child."
Puckett is a certified teacher of regular education and special education. A graduate of Central State College, now the University of Central Oklahoma. She has been an advocate for autism and speaker at conferences, sharing her story of raising, teaching and caring for Stephen. Puckett is always willing to do her part by sharing what has worked to improve her child's quality of life and give hope to parents and caregivers who are on the road to autism.