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From the Heart:
Samantha Smiles
By Nina Patten • Photo by Katie Sauck
Lori and Terry Wynia live on an acreage outside of Marshall, Minnesota, with their two children, Samantha, 9, and Joey, 8. Lori is the Off-Campus Program Director at Southwest Minnesota State University, Marshall. This busy mom shares their family’s story of living with autism to offer encouragement and information to other families of children with special needs.
Lori’s pregnancy and delivery of Samantha was completely normal. As a baby, “She really liked to be held. If I laid her down, she woke up. I tried to let her cry herself to sleep but she never got tired.” Samantha sat up, crawled, and walked within the anticipated time frame for infants. She was saying a few words and could identify objects in her books.
Something is Wrong
A few months before Sammie’s second birthday, Lori began to notice some behaviors including hand fluttering and unusual verbalizations. Samantha also didn’t play with toys other than to hold or carry small objects in her hands. Lori says, “Like a normal mother, I tried to convince myself that nothing was wrong. Maybe she was just a late bloomer.” However, Terry was convinced that they needed to have Sammie evaluated. “I give him credit for that. He knew something was wrong and pushed the issue.”
Their first step was to have Sammie evaluated by a speech therapist in Marshall who told them that something was not right. He could not diagnose Sammie, but his written report to their pediatrician initiated a referral to Sioux Falls Children’s Hospital. “We went through a full evaluation with child psychiatrists, psychologists, occupational and speech therapists and educational and behavioral specialists.”
By now Samantha had passed her second birthday. “She had been stringing a few words together and phrases but by this time she wasn’t talking at all. I wondered what could have happened,” Lori says. “It was all gone in a matter of a month or two – almost like someone had flipped a switch.”
Sammie’s diagnosis followed an intense series of examinations. There is no medical test for autism, only a series of behavioral assessments and professional observations. Lori explains, “To diagnose autism, there needs to be a deficiency in at least three of the tests involving communication, behavior, socialization, education, sensory and occupational abilities. They told us immediately that she was on the autism scale and ranked as severely autistic.”
As a baby and toddler, Samantha rarely slept for more than two hours at a time. Lori says, “She wanted me to come and be with her. There was a long time when we were all sleep-deprived. Once she was diagnosed, I was sad, but at least we were able to help her. We started to see a developmental pediatrician who prescribed medication to help her sleep.”
Sammie’s brother Joey was born during the period of time that Lori and Terry were going through the testing process. It was a stressful time for the family. Lori worried that Joey could also be autistic as the condition does seem to run in families. “Autism is such a mystery. No one seems to know the cause – it may be genetic. There are studies to see if there are environmental factors that could cause it. I know of one family with four autistic children.” Joey does not have autism and is growing up to be a great brother for Samantha.
Where Do We Go From Here?
That was the first question Lori and Terry asked after receiving Sammie’s diagnosis. “They told us to start with our school district. I went to the director of special education who did an educational assessment. She told us that she qualified for special education preschool so we enrolled her right away.”
Early, intensive intervention for children with autism is thought to be critically important. Lori also started doing research on what else they could do, “School wasn’t going to be enough so I contacted the county social services and asked what was available. Then I filled out mountains of paperwork.” Her persistence paid off and Sammie began receiving in-home services and therapy, “The key is to get as much therapy as possible in whatever deficiencies she has.”
In addition to her special education classes, Samantha is mainstreamed into her regular class for part of the day. Lori says, “Her biggest advantage is being in a classroom with others. Her peers are her best teachers of socialization skills.” She has seen improvement and it is encouraging, “When she first started attending physical education classes, she could not follow any of the organized activities or races. Samantha would run helter-skelter and her para-professional would have to run after her. But as the year went on, she was watching her peers, seeing what they were doing and staying with the group. She can even run laps with them now.”
“Each autistic person has different needs. Sammie’s most serious deficiencies are in communication skills and her sensory abilities – especially pressure and motion. Her brain processes sensory information – sight, hearing, touch, taste – different from others. So you give her therapy and exposure to those kinds of things. Essentially you have to teach her neurological system something that comes automatically to someone else,” Lori explains.
Samantha’s speech therapist and personal care attendants are teaching her to use an augmented communication device. Therapy also enables the family to improve Sammie’s quality of life. “Sammie is happy most of the time but sometimes becomes frustrated or anxious. Movement calms her down. We put a swing in her room and when she climbs into it, she feels better.” She also likes to lift and climb – anything that works her muscles makes her feel good, “Sammie takes a different path to calm herself. Most children can verbalize feelings and what they need. Sammie can’t so she is learning to help herself by doing some of these things.”
Lori and Terry realize how important it is to keep Sammie’s therapy and treatment
on the right track, “We really have to stay on top of this so she doesn’t regress. And if I were to be honest, it’s difficult to know how to do that. Her in-home therapists are with her all the time. It’s nice for Samantha but it makes life different for the rest of us.” Lori knows that Joe also needs her care and attention, “He is such a great brother to Sammie. He understands that she is different and even watches out for her at school.”
Because there are so many people involved in Sammie’s care, Lori attends numerous meetings, “It can be daunting,” Lori says. “The professionals look to the parent to make the decisions. Sometimes I just want to be the mom but in reality I am also a case manager. And I think this is what scares parents of autistic children the most.”
“I meet with the school and her habilitative staff when we are planning her goals. I struggle to find a balance for what goal we can set that is ‘out there’ enough to challenge her, but not so far that she cannot achieve it. All of her goals need to be attainable – and if she does not succeed, was the goal too hard? Or was it because our methods were not right? Do we change the goal?”
Since Samantha’s diagnosis, Lori has been involved with a parents support group that right now “is in a state of flux.” Keeping a group going in a rural setting is difficult. Lori tried moving meetings around but as time went on, attendance dwindled. She has been working with parents one-on-one through her listing on the Autism Society of Minnesota Web site but wants to revive the support group, “But not in the same model. We are looking at some type of electronic format – perhaps Webcams or video conferencing. Terry is really good with computers and he’s working on different ways to connect electronically.”
From a Mother’s Heart
“I do have hopes for a future for Samantha. I think that is the one thing that parents grieve about the most when they first hear that their child has this diagnosis of autism, it is a grieving for the hopes and dreams for the future of that child. Sammie will always have obstacles in her path that others cannot comprehend, but I do have hope that she can find a way to manage them and have a happy life. If nothing else, she is an extremely happy girl and right now her quality of life is wonderful. She smiles and laughs and has friends at school and I am very happy for her and love to be her mother.”
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