I’m losing my son, Kimberly Matthews thought.
Thomas had been a happy 1-year-old in the first months of 2004, laughing and playing peek-a-boo. During one visit to Matthews’ workplace, the little boy played patty-cake at the front desk. As Matthews and her co-workers were singing to Thomas “roll ’em up, roll ’em up, throw them in the pan,” a woman walking by told Thomas, “Don’t let them make you play that sissy game.”
Thomas turned his head and stuck out his tongue. Everyone shared a laugh.
“He had a remarkable way about him,” Matthews says.
The change came suddenly. Kimberly Matthews drove to her 15-month-old son’s day care one afternoon when all the children were playing outside. Apart from the others, Thomas quietly stared at a tree as his mother approached.
At the time, Matthews said, the day care operator dismissed the unusual behavior: Just leave him alone. He’s just being a kid.
Ever since, Thomas has been in his own world and has stopped interacting with others. He wouldn’t respond to his name or loud noises, so Matthews initially thought he had hearing problems.
Matthews would wave her hand in front of his face, but she couldn’t get his attention. It was more than his hearing.
Then the tantrums started. Thomas kicked, bit and screamed. Matthews didn’t know what her son wanted. When the tantrums would start, she would guess what he wanted until she got it right.
Pregnant with her daughter Malinda at the time, she thought she might just be too emotional. But her instincts and health background as a nurse practitioner told her something was wrong.
As she searched for answers during the next year and half, Matthews would have to overcome numerous hurdles before Thomas would be officially diagnosed.
Matthews’ pediatrician agreed Thomas was developmentally behind most children his age. His speech was delayed, and he couldn’t follow simple directions. But he could manipulate a Rubik’s cube, a more difficult task.
The pediatrician gave Matthews a vague answer: Wait and watch.
By his second birthday, Thomas was turning in circles. He would get lost looking at a light or a fan. His second birthday was the opposite of his first birthday. Thomas’ smile was gone.
After another developmental assessment in 2005, Melinda Henson, who worked for the Missouri Department of Health and Senior Services and did assessments on the side, recommended that Matthews enroll Thomas in the local First Steps program, an early intervention program for children under 3 with developmental delays.
When Thomas was 2 years and 9 months old, a speech therapist, Vicky Lyskowski, suggested that he might have autism.
Matthews’ heart sank. She knew a little about autism from her medical background; the information on autism in one of her textbooks only took up half a column. She had also read about autism on the Internet while searching for information on developmental delays.
Matthews hoped it wasn’t true, and Lyskowski reassured her that there were many different developmental delays.
But Matthews thought Lykowsky might be on the mark, and decided to take Thomas to Tracy Stroud, a specialist in developmental delays at University Hospital. On Nov. 3, 2005, Matthews called to make an appointment for her son. The receptionist told her Thomas’ appointment was scheduled for May 25.
Matthews hung up the phone and burst into tears. After getting her thoughts in order, she knew waiting seven months wasn’t acceptable. She called once a week to ask about appointment cancellations — ready to take Thomas at a moment’s notice. The appointment was moved up to March, then February and finally to Dec. 14.
Matthews was overwhelmed by the four-hour appointment. She filled out paperwork on her health and habits after Thomas was born, during her pregnancy and even pre-conception, as well as ones on Thomas and her family’s genetic history.
The multidisciplinary team, which included a speech therapist, dietician, physician and nurse practitioner, assessed Thomas’ development.
By the end of the appointment, there was an answer.
Stroud entered the room, sat close to Matthews, looked her straight in the eye and told her the diagnosis: Autism spectrum disorder.
Stroud told her they normally don’t diagnose children under 3, but Thomas was only a month away from his third birthday. The diagnosis was unlikely to change.
The doctor handed Matthews a stack of forms and information. Everything else in the room faded into the background. Matthews had known it in the back of her mind, but she was still in shock. She felt numb.
The next morning, on her way to work, Matthews pulled her car to the shoulder of U.S. 63 and cried.
She cried a lot during the next few weeks.
Each day, Matthews was simply going through the motions of her daily life. She said she doesn’t remember Christmas that year. Her dreams for Thomas — college and success — were disappearing.
Autism spectrum disorder affects 1.5 million Americans and their families, according to an estimate by the Autism Society of America. Autism is four times more prevalent in boys than girls.
Every year, more mothers go through the frustrating process Matthews endured. Statistics from the U.S. Board of Education suggest that autism is growing at a rate of 10 percent to 17 percent each year.
Autism spectrum disorder impairs a person’s ability to communicate and relate to others. The degree of impairment differs among those with autism, the spectrum ranging from mild to more severe cases. Many children are delayed for other reasons, but Matthews believes the referral process should start sooner.
Matthews wishes she had taken Thomas to a specialist when he was 15 months old. The chances of recovery are better with early intervention.
Looking for answers
The team told Matthews that Thomas could be mainstreamed between the ages of 7 and 9 if she did all the therapy possible. Matthews wanted a recipe.
If someone has a heart attack, the cardiology department, where she worked, treated that person’s heart attack. For autism, however, there isn’t a clear treatment.
She asked Thomas’ teacher at his early childhood special education program what she saw for the boy’s future, whether she thought Thomas would be able to get over this. The teacher told her he would get an aide, or shadow, to help him throughout his schooling.
Her response shocked Matthews. What would happen when Thomas was 18 and graduating from high school? He wouldn’t be able to have a shadow forever.
A shadow wasn’t a solution, she reasoned. She wanted a better life for her son.
So she bought books and began to learn more about autism. One of them, “A Real Boy” by Christina Adams, hit home. Everything Adams went through with her son in her memoir, Matthews had experienced with Thomas.
Matthews typed a three-page impassioned letter to Adams and sent it on a Tuesday. On Friday of that week, Adams called, and they talked for an hour.
Adams gave Matthews counsel and invited her to meet at a conference in Chicago called Autism One.
Matthews remembers the author’s words of encouragement: “I did it. You can do it.”
For a single mother of two children with no family in the Columbia area, the trip to Chicago was expensive, but with the help of friends she managed to scrape together the money.
Matthews made business cards before she left. MOCHA, she labeled them, for Mother of a Child Hero with Autism.
The conference opened Matthews’ eyes. She met Adams and other prominent people working in child development and came home with a mound of information. A plan began to come together.
Matthews awoke on May 25, 2006, and realized that if she hadn’t been so motivated her son would only then be going to a specialist. She was already enrolled in Boone County Family Resources, an agency that provides services for 1,200 Boone County residents with developmental disabilities.
She contacted a neuropsychologist, Stephen Kanne, through University Hospital. Her Boone County Family Resources liaison, Tia Schultz, attended the appointment. Kanne confirmed the diagnosis of autism spectrum disorder. He recommended applied behavior analysis, speech therapy, occupational therapy and physical therapy.
Matthews began training classes through Judevine Center for Autism, a St. Louis-based organization for families affected by autism, to learn how to work with Thomas. Matthews set up sessions through the Thompson Center for Autism and Neurodevelopmental Disorders, which Thomas started in December.
Henson was now working as a child developmentalist and behavioral consultant through the Thompson Center and is the consultant for Thomas’ applied behavior analysis.
Thomas is working every day of the week to achieve each milestone that is taken for granted with a typically developing child. Through the sessions, he has come a long way.
Sarah Bubash, a special education major at MU, has been helping take care of Thomas and his 2½-year-old sister on weekends since March 2006.
“Thomas went from not playing with others, not being able to ask for things to now he’ll ask for a cookie, or he’ll say, ‘Hi, Sarah,’” Bubash says.
When Bubash first met Thomas and when Ashley Burris, one of his therapists, started working with him, he didn’t acknowledge other people in the room and wouldn’t respond to his own name.
“It was really hard,” Burris says. “You couldn’t talk to him. You had to have something that caught his attention.”
He’s since learned to greet his mother with, “Hi, Mommy,” when she walks through the door.
During the two-hour in-house sessions, Burris completes a variety of short programs that help Thomas with his communication skills and behaviors.
Burris sits next to Thomas, who is dressed in a Spider-Man shirt and jeans, at a kid-sized table in his bedroom, a binder stretched out next to her. She flips through a series of cards as Thomas points to each one and says what it is: “Sewing machine,” he says in the high-pitched voice of a child. “Sewing machine. Sewing machine.”
The next card, with a picture of a baseball glove, proves more difficult. He says the correct words the first two times, but the third time Burris holds up the picture, he says, “baseball hand.”
They take breaks between each program. Thomas plays with his Matchbox cars in his cars-themed room, as Burris notes his performance on the past activity.
It is only through another symptom, echolalia, that the casual observer would realize Thomas is autistic. Echolalia is the repetition of vocalizations of another person. Thomas repeats the words he has heard throughout the day as he accomplishes parts of the programs: “Strawberry shortcake, gingersnap, outer space ... .”
The therapy is expensive. Matthews’ insurance pays for a portion of his speech and occupational therapy, and Boone County Family Resources covers up to 12 hours of applied behavior analysis.
Matthews has decided to start writing to big companies as a way to gain additional resources.
“I’m willing to be an expert on autism as a mother,” she says.
And she is.
Matthews has three binders of articles, at least 100 books and estimates she has completed 1,500 hours of research on autism.
She also lives it.
“She doesn’t have a life outside of autism,” Bubash says.
The process has been a struggle, but Matthews is thankful for the blessings in her life.
“He loves to hug, and he loves to cuddle,” Matthews says, noting that some autistic children don’t like to be touched. “It all goes to show, if you think you’ve got it bad, just look out the window.”
Matthews has high hopes for both of her children. She hopes Thomas will become mainstream, but her main goal is for him to have a wonderful life. She is planning more family fun activities, such as going to the zoo, swimming or having music nights.
“Thomas loves to dance,” she says, looking over at her son, who is skipping around the living room with Malinda trailing behind, an activity which wouldn’t have occurred only months before.
Thomas made another big step by initiating activity. A gospel song, “I’m a Believer,” played as the family was in the kitchen. Thomas, who loves the song, told his mother to “dance with me!”
He waved his hands in the air as he danced with a glow in his eyes. Malinda began jumping, and soon the whole family was dancing to the music.
Matthews cherishes such moments.
“Everything will be all right,” she says. “These are my heroes.”
• First Steps – offers assistance to families of children under 3 who have developmental delays dese.mo.gov/divspeced/FirstSteps/
• Judevine Center for Autism – a St. Louis-based organization for families affected by autism
• Boone County Family Resources – provides services for Boone County residents with developmental disabilities
• Thompson Center for Autism and Neurodevelopmental Disorders