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Autism strains family finances, relationships
Published December 1, 2009
Last in a series on autism, diagnosis and treatment
As Julie Martinez walked into BACH’s therapy room, the frustration showed on her face, in the way she walked and the way she slowly sat down.
Martinez of Pearland was desperate to figure out why her 2-year-old son was crying. Sammie had been crying all day, and at 11 a.m., the end of the hour looked forever away, let alone the end of the day.
Courtney Ward, Sammie’s occupational therapist at Brazoria County Association for Citizens with Handicaps, tried to comfort him, finally distracting him with shaving cream and a mirror. But because of Sammie’s inability to speak or communicate, Ward and Martinez could only guess at what was bothering him, a frustrating fact Martinez lives with every day.
Change of routine, different foods, overstimulation or not enough stimulation can cause Sammie to have a total meltdown.
Sammie has extreme social and speech developmental delays, and many of his actions showcase classic autism, though he has never been officially diagnosed, Ward said.
When asked the toll Sammie’s disorder has had on her family, Martinez smiled sadly.
“It’s hard,” she said.
SEARCHING FOR A REASON
Perhaps most frustrating to parents of children with autism is the lack of knowledge. Not knowing how to care for a child who cannot communicate their needs is tough. Not knowing what caused their child to have autism is even tougher.
Five developmental disorders fall under the umbrella of autism spectrum disorders, according to Autism Speaks, an organization dedicated to raising money to promote autism research. These developmental disorders are autism, Asperger’s syndrome, Rett syndrome, pervasive developmental disorder not otherwise specified and childhood disintegrative disorder. They are characterized by impaired communication skills and social abilities, as well as repetitive behavior.
Recently in the news, Americans have debated the possible causes of autism, including vaccinations, but for now families can only guess at what has made their child different, as no conclusive studies have been done.
Trena Rouse, mother of a 10-year-old son with autism, used to spend every night on the Internet, trying to figure out why her son has autism.
“As a parent, I think vaccines are involved,” Rouse said. “As a student, I think it’s genetics.”
Rouse is studying psychology, specifically applied behavioral analysis for individuals with autism.
Her child was talking, smiling and laughing before his vaccinations. The pictures of Tristan as a baby versus the pictures of Tristan as a young boy show the story of his regression, she said.
“The light went out in his eyes,” she said.
Most parents believe that just as the symptoms of the disorder vary from child to child, the reason for the disorder varies from child to child.
“You’re so overwhelmed, and you’re mad at everyone,” said Pamela Brown, Lake Jackson mother of a 32-year-old diagnosed with autism at age 10. “That’s why it’s so hard.”
FINANCIAL STRAINS
In trying to get her son the care he needs, Brown filed for bankruptcy twice. At one point, she and her son lived in a tent in a park.
“It’s just been a long, hard road,” Brown said. “Our family has gone through ups and downs.”
Often mothers neglect themselves because so much of their attention must be focused on their child.
“I felt like I didn’t have time to work on my own grief, my own issues,” said Teresa Petersen, Brazoria mother of a 12-year-old with autism. “I just needed to focus on my child.”
In addition, therapy often can be expensive.
Everything at Lake Jackson resident Lisa Alpeter’s 9-year-old son, Ryan, needs and every therapy he attends is expensive, she said.
A FAMILY DISORDER
Whether because of the expense or the stress, the divorce rate for parents of children with autism skyrockets, Petersen said.
Fathers are often the fixers in the family. When faced with a problem they cannot fix, they are overcome with a sense of failure that can eventually influence them to leave, Petersen said.
Spending time with your spouse is important, even when you feel like you are unable to leave your child, Petersen said. Petersen suggests reaching out to other parents for support, especially in the early years when everything is new.
“Take care of your marriage,” Rouse said. This means communicating with your spouse about ways to treat autism and ways to keep the family together, she said.
“Hang in there,” she said. The symptoms of the disorder do get better over time, she said.
Not to be overlooked, the siblings of children with autism are also permanently effected by their brother or sister’s disorder.
Martinez’s two older children struggle with Sammie’s difficulties. They feel the unfairness of having a brother who needs constant help. It’s unfair to them and to Sammie, Martinez said.
Ryan’s diagnosis also has been hard on Alpeter’s daughter because the family has been unable to spend as much time with her, Alpeter said.
“You have to be aware of the challenges,” she said.
Rouse suggests parents remember to focus some alone time on their children who do not have developmental disorders, she said.
But as the old proverb says, sometimes things are easier said than done.
For Martinez, who is dealing with Sammie at the height of the developmental disorder, the positive effect of treatment looks far away.
In Sammie’s house, Martinez and her husband must constantly be on guard, watching their son for signs he is about to have a meltdown. They make it through their child’s disorder one day at a time, she said.
Katlynn Lanham is a reporter for The Facts. Contact her at 979-237-0150.
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DIAGNOSIS
SUNDAY: Five developmental disorders fall under the umbrella of autism: autism, Asperger’s syndrome, Rett syndrome, pervasive developmental disorder not otherwise specified and childhood disintegrative disorder.
TREATMENT
MONDAY: Occupational therapy works on the child’s motor skills, visual perception, self-help skills and many other skills. Therapy is all about helping children learn to function in different environments.
FAMILIES
TODAY: Perhaps most frustrating to parents of children with autism is the lack of knowledge: Not knowing how to care for a child who cannot communicate his or her needs and not knowing why the child has autism.
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