Autism: learning the art of communication

Autism: the word on its own implies to the fact that someone is going to have a hard time in life. In reality, it means that more than one person is going to have a hard time in life.
Practically speaking, autism is the breakdown in communication between the main character and those with whom he is trying to communicate. There is so much more to the problem on both physical and mental levels that this article will be broken down into a series of stories.
Initially, you will meet Paul Trahan and his mother Cheryl. His father, David, was off-shore at the time of this interview. Paul just celebrated his third birthday and is beginning to make positive signs of communicating for the first time in his life, according to Cheryl.
The next installment tells of is what has Cheryl singing praises about: Paul’s ability to communicate for the first time. Abbeville is home to a private treatment center for autism named Sensory Pathways. Located on Hwy. 167 north just before the last turn on the highway going to Maurice, they have moved into the old yacht and boat repair location and have managed to fill the entire back end of the building with some of the nicest children’s playground equipment for use in therapy. Occupational Therapist Lorri Malagarie and newly-married Special Education teacher Mary Brown Toups will explain how they came together to start a program that is reaching autistic children.
Meet three-year-old Paul Trahan.
A cute kid by most standards, Paul was born approximately a month pre-mature to a mother who was 43 years old at the time. He was born with all of his fingers and toes, which are among the usual inspection points on a new-born’s body by parents. However, he did have one basic problem: he stopped breathing after delivery. The first five days of life were spent in ICU where he was able to normalize his breathing patterns.
His mother Cheryl said that she noticed at six months of age “that Paul wasn’t progressing like other children in that age category. He wasn’t even attempting to sit up at that point. The pediatrician said I was worrying too much.”
At this point, Cheryl started to document everything. She said if Paul did or did not do something he was in the chart range to do, she would make a note of it. On occasion, she would pull out the family video camera to further back up the problems she was trying to get across in the doctors office. An MRI image helped to diagnose the fact that Paul had Dandy-Walker Malformation.
Dandy-Walker Syndrome is a congenital malformation involving the cerebellum and the cavity in the brain called the fourth ventricle. Hydrocephalus leads to an abnormal increase in fluid and head circumference that occurs in 70 percent of patients.
 The major clinical symptoms are a delay in normal neural and muscle tone development, mental retardation and hyrocephalus. That means delayed development of Central Nervous System and locomotor system resulting in abnormal muscle tone called “spasticity”. Mental and intellectual functions are depressed in half of patients. If the child has severe malformations from birth the signs may appear at early ages. But sometimes the disease may be unnoticed until adult ages. (Information from the website http://www.geocities.com/murat_yil/dandy.html.)
Paul began treatment with a pediatric neurologist out of Baton Rouge because his initial doctor at Tulane Medical School was missing, along with all of Paul’s records, in post Hurricane Katrina. “We were finally able to get almost everything (treatment progress) through Blue Cross, our insurance company, but we didn’t have any of the doctor’s notes,” said Cheryl. “One of the first steps in treatment was therapy to be done at Women’s and Children’s Hospital in Lafayette. “This went on for a while, but he cried constantly.”
“One of the worst things we can do to Paul is to get him out of his routine,” said Cheryl. “Everything affects Paul different from you and me especially colors, noise and bright lights. Wal-Mart is terrifying for him. Most of the time, we leave him with our parents because we can’t take him shopping. Finding a sitter is almost impossible. Most of them don’t understand his situation, nor do they know how to handle him. It’s not that they aren’t good sitters, but they’re just not prepared for what he’s going to give them. He has seizures and sleep apnea and often goes into a trance that can lead to hospitalization if not caught in time.”
During the interview, Paul proves himself to be a normal, curious three-year-old. He spends some time with his grandmother, Eula Guidry, in Kaplan. She has a duplicate set of toys at her home to match the toy’s Paul has at his home. Her pet cat has also learned to deal with Paul and his behaviors and goes looking for him when he’s not visiting, according to his grandmother.
One of the most notable characteristics of autism is the repetitious actions taken, whether it is movement of the hand, head or legs. Sometimes is as simple as bouncing up and down on his toes, or waving his hands, but other times it can be harmful by beating his head against a wall. The action is called “stemming” and is basically a means of acting out because the autistic person isn’t able to express themself in a normal communication method. The problem begins with fluid in the head that controls the area associated with balance, walking and talking.
A lot of the time, stemming is acted out by spinning in circles or laying down and kicking feet in the air or waving hands in the air. Other times, stemming is simply watching a repetitive action take place, like the turning of a fan, or the turning of tire wheels. Ultimately, the process is self-calming, according to Cheryl, and helps to burn off some of the pent up frustrations felt by the autistic person who simply isn’t able to express themself in a manner that someone else can understand.
The recent television commercials about planning your retirement investments with a non-English-speaking financial planner is a good example of not being able to communicate, according to Cheryl. “When David comes in from off-shore and is home with us, he goes through a lot of the same problems that Paul experiences in trying to understand what he wants. I have to tell him to sit back and observe what Paul is trying to get across.”
This summer, Paul began a treatment session with Lorri and Mary at Sensory Pathways which has Cheryl absolutely signing their praises. “I would stand on the steps of the capital and yell out how much Paul has improved this summer working with them,” gleamed Mama Cheryl.
“The doctor said he would not walk until he was five years old and he’s running all over the place already. He’s only three now and we’re working on potty training. The Summer Enrichment program they placed him in has him voicing now for the first time in his life. They’re working on teaching him how to use table utensils and, possibly, keeping his shoes on his feet.”
“They send home notes from school going over what they worked on in class so that we can continue the same lessons at home. We also send the note back in the morning to let the teachers know what kind of night he had, whether he was sick or anything else that might help them understand what he’s going through,” continued Cheryl.
Paul has playtime like any other child. He likes to watch videos, plays the normal childhood games with balls and swing sets, takes part in water therapy in the swimming pool and works on writing and coloring skills as do other children his age. However, Cheryl said he plays better by himself; that he doesn’t want to be bothered by anyone. Normally, if he wants something, he will point it out or drag you over to it to point it out said his mother.
“Most of the time it’s a guessing game,” continued Cheryl. “And it gets even harder when he’s sick. A lot of times it comes down to a process of elimination. Is he wet or dry or thirsty? But, whatever else happens, do not get him off his time schedule or he will have a melt-down. Breakfast is at 7:30 a.m.; lunch is between 11 a.m. and noon; supper is 5:30 p.m. with a morning snack at 10 a.m. and a nap at 2:00 p.m.”
“His favorite foods are peas, green beans and french fries. All of them are finger foods because he’s still trying to learn how to hold a spoon. He’s not a rice man, but does like spaghetti, chicken and cantaloupe. Both of us (Cheryl and David) have diabetes on both sides of our families so we really avoid sweets and eat natural fruits instead. We will do anything once with Paul to try to get him to the next step with autism, and that includes experimenting with food. We’ll change things up every two weeks or so to make sure we give him time to see if he likes something or if it’s going to just cause more problems.”
“One thing we don’t have to worry about is whether or not he’s chewing his food. He won’t take the next bite until he’s through chewing what’s in his mouth. I don’t know if he’s counting how many times he chews or what, but just don’t plan on rushing how long he takes to chew his food.”
Cheryl said that clothing on an autistic child can cause problems as well. She said that the clothing has to fit just right. If the sleeves are too short, Paul will try to pull it down into place the entire day while he is wearing the shirt. Also, the texture of the clothing is important. She described the feeling of a tag on the back of a t-shirt and how it itches sometimes as to how an autistic feels with some clothing materials.
Paul also has to feel clean, according to his mother. “He hates for his feet or hands to be dirty. He’ll even get his own wipes to clean himself, especially if he’s had any finger foods.”
The biggest problem that Cheryl discussed for families of any special needs children is where to go when it comes time to be evacuated. “When we evacuated for Hurricane Rita, we were in a big open facility with everyone else and there’s no privacy at all. But it’s not privacy for us as much as it is for the child. When all of the sights and sounds of a new place filled with all of the extra people hit an autistic child, it really terrorizes them because it’s so far out of what they know and can handle. We were fortunate to be able to buy a camper to take us and my mom out of the area when a storm is coming. It helps to keep Paul relatively calm.”
“With the changes in weather, we can almost always tell when something (storm) is coming our way,” continued Cheryl. “His stemming increases and it becomes even more difficult to understand what he wants. And with the increased stemming you can see that it bothers him even more. It’s almost like the old people who can feel a change coming from their arthritis.”
Through all of the issues Paul faces in his life, Jesus Christ, the Pope and all things religious have become a focal point of his life. At home, and his grandmothers home, he has a selection of religious DVD’s that he watches and mimics along with the cable network EWTN. “We can be driving down the road,” said Cheryl, “and he’ll point over in a certain direction and say ‘Jesus’ and eventually we’ll get to a place that is a church or other similar place related to religion. Even the crucifix outside of the Graceland Cemetery catches his attention.”
According to Paul’s mom, he focuses on seeing the Pope on television or a photo in the paper, watching the Mass on television along with the Rosary service on EWTN. “If we don’t say the Rosary first thing in the morning or before bedtime at night, it’s a given that he’s not going to have a good day,” concluded Cheryl.
In the Catholic Church, Pope Benedict has declared this the year of St. Paul. This young man does not have the history of persecuting ancient Christians, but identifying a picture of Christ, or his talent for finding anything religious out on the open road or even his desire to carry a crucifix in his hand while at home, certainly sets the tone for the same zeal his namesake, St. Paul, embraced after his own transformation.
So far, Cheryl estimates they have spent $12,000 of their savings on related expenses for autism. “David makes too much money for us to qualify for any services. We set aside a special needs trust for his care in the future, but we also know he won’t be able to participate in the band, play football or do any extra curricular activities in school. He won’t be able to do any physical type of work and will never be able to get married and have children of his own. We don’t talk about the future because anything Paul accomplishes good today is a big deal and we make a party out of it.”
Cheryl concluded that “we get a lot of stares, like when we do take Paul into a store and he starts stemming and screaming. I know there are a lot of broken families because of the autism, but there are also a lot of support groups to help out. David and I know we have to take time out for ourselves so we don’t burn out either. He’s a blessing and I’d do it all over again.”
The Acadiana Autism support group meets in Lafayette at Alesi’s restaurant on Johnson Street on the first Tuesday of each month at 6:30 p.m. The Vermilion Parish chapter meets the first Thursday of each month at the Farm Bureau Insurance office on Veterans Memorial Drive by the driver’s license office at 6:30 p.m. There are meetings for families or just dads, to be able to share problems and experiences, both good and bad.
The next story will cover Sensory Pathways and how Lorri and Mary work with the children to get to the next development stage in learning with autism.