Autism in Real Life

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Their families have been touched by autism, and they want to share their stories with you. Read on to find out about just a few PLNU families affected by ASDs.

The Bilby Family

Mark Bilby is a PLNU adjunct theology professor.

Elijah Moshe Bilby was born two weeks after Transfiguration Sunday, the commemoration of Elijah and Moses speaking with Jesus. That means a lot to his father, Mark, PLNU adjunct theology professor. Elijah, age 4, is the second son of Mark and his wife, Tamara. His older brother Sam is 7 and younger sister Simone is 3. It was when Elijah was 2 that his parents began to notice some signs that their middle son had Asperger’s.

“He didn’t respond to his name,” said Mark. “We noticed that he wasn’t making eye contact, and sometimes when he was playing, he ran in circles with his eyes fixed on a spot in the middle of the carpet.”

The Bilbys’ doctor confirmed that Elijah was on the autism spectrum, and early intervention services were started for him right away.

“It’s been a super positive experience,” Mark said.

In his family’s case, Mark noted that the California Department of Developmental Services San Diego Regional Center and local school district have been very supportive and helpful. Elijah has received free public preschooling with integrated therapy times, as well as at-home applied behavioral analysis (ABA) and occupational therapy. He’s currently a part of PLNU’s Early Childhood Learning Center (ECLC).

Part of Elijah’s therapy has involved building new routines and working on his behavior. At the ECLC, he has special cards that tell him which activities will be happening each day and in what order. Because Elijah already reads extremely well, the cards have words as well as pictures. Connecting the cards is a special sensory ring that Elijah can manipulate as a way of soothing himself when he’s feeling stressed or just needs to move so that he can listen.

When ECLC director Susan Rogers (pictured) talks about Elijah, she lights up.

“He’s very high functioning,” she said. “He’s doing very well. He reads. He’s just very bright.”

Mark calls Elijah’s progress “huge,” and Rogers agrees. In fact, Elijah will likely be able to enter a mainstream Kindergarten class next year. Mark is hoping he will get into a Spanish magnet school. Elijah has already taken a liking to learning a new language.

“He’s very bright and sweet and loving,” said Mark.

“He’s very special.”

The Busby Family

Avery Busby was a student at PLNU’s Early Childhood Learning Center.

Spencer and Angie Busby didn’t realize there was anything different about their firstborn child, Avery, who is now 13, when they sent her to preschool at PLNU’s Early Childhood Learning Center (ECLC). Her teacher, Tamara Heinz, was the one who noticed that Avery was behaving differently from most children. Being with the other children, especially in circle time, caused Avery a great deal of stress, and she would sometimes act out so she could go to time out and be alone. She had difficulty napping at school as well as sleeping at home. She was extremely attached to a stuffed black cat that she carried everywhere. Unlike many other children, Avery did not demonstrate much affection toward her teachers or parents. Later, when the Busbys’ son, Spencer, was young, the differences became more apparent to them as well.

On Heinz’s advice, the family had Avery assessed by a psychologist who diagnosed her with Asperger’s syndrome. Heinz worked with Avery both in school and in the Busbys’ home, helping her develop routines. Angie noted that it has often been difficult to find people who connect with Avery, but Heinz has had a lasting bond with her that the Busbys deeply appreciate.

One of the approaches that helped Avery was the use of “social stories.” Heinz created a simple story about naptime, for example, and cast Avery as the main character. The story walked through the process of getting ready to nap and showed Avery successfully sleeping when the time came. The story helped Avery understand what was expected of her and served as a transitional cue to switch from playtime to rest time.

Today, Avery is attending a private Catholic school because she found the large size of her local public school overwhelming. Although her parents looked into educational help for Avery, they ultimately decided against an aid or special day class for her. Overall, Avery has done very well in an inclusive setting.

“She has some friends. She gets all As and Bs,” Angie said.

Avery has also taken to the piano. In fact, when she was four years old, she sat down at a piano and began playing a song from “How the Grinch Stole Christmas” by ear. When her mom hired a teacher to give her lessons, Avery withdrew. Since last summer, however, Avery has renewed her interest in the instrument and is working well with a teacher to learn how to read music.

Until recently, Avery didn’t want to accept her diagnosis or let others know about it.

“She wants to be like everyone else – like every kid does,” said Angie.

Not long ago, however, Avery began reading some books her mom had on Asperger’s and admitted that she related to some of what they said.

“She knows she’s different in how she thinks, and acceptance of that should help her,” said Angie. “Religion is important, too. It’s something very positive and comforting in her life.”

The Rogers Family

Jennifer Rogers is a former PLNU staff member and current independent contractor with Point Loma Press.

Jennifer Rogers and her husband, Ansel, were involved in cross- cultural relief work in Peru when she found out she was pregnant with their now 9-year- old son, Jake. For the first three years of Jake’s life, Jennifer knew something was different about her son, but the doctors they saw dismissed her worries. Particularly painful was the fact that even a few of Jennifer and Ansel’s friends questioned the legitimacy of their concerns.

“Before his diagnosis, Jake failed to thrive and refused solids because of his sensory integration issues. At that time, one pediatrician acted like I had Munchausen syndrome,” Jennifer said. “There wasn’t the awareness of autism that there is now.”

By God’s grace, when Jake was 3 and Ansel was in seminary near Lexington, Ken., Jennifer searched through child development works and found a book written by the mother of an autistic child. She finally realized that Jake, too, had autism. The family moved to the San Diego area where Jake was finally diagnosed.

Jake benefitted from in-home early intervention therapy, which included applied behavioral analysis (ABA), Floortime, speech and occupational therapy, social skills training, and meetings with both a behavioral psychologist and a pediatric neurologist. Jennifer and Ansel received parent training as well and worked closely with Jake’s teachers.

By age 6, Jake could use the bathroom independently. He also developed some verbal skills although Jennifer said back-and-forth conversation is still difficult for him. When he does respond, he often only uses single words or short phrases. Despite two diagnoses of intellectual impairment from the public schools (which conflicted with two other tests taken privately that put Jake’s IQ in the normal range), he is currently reading at a 4th grade level. Jake still struggles with frustration and aggression. Repeated night waking is common for him though Jennifer noted that the more physically active he is during the day, the better he sleeps and the better his mood. Jake greatly enjoys swimming and also likes to run, bike, and jump on a trampoline.

“The most important thing is living in community and helping Jake find his place in it,” said Jennifer. “Jake knows when people care about him and respect him, and he shows it. Having other people in Jake’s life is so important.”

Jake and his sister, Sarah, 7, have a new baby brother, Charles, who is seven months old.

“Charlie was a surprise, and having him has been phenomenal for the whole family,” Jennifer said. “The children adore him. Jake was so bonded with him when I was pregnant. He would hug my belly and say, ‘Charlie’s a boy’ or ‘I like Charles.’”

Now, she sees the boys laughing together and enjoying each other’s company, and it is truly rewarding.

Both Sarah and Charlie are benefiting from the family’s recent move to Tennessee, thanks to special programs offered at Vanderbilt University. Sarah has been able to attend sibling Saturdays, which have special events just for children with a brother or sister with special needs, and she will attend a sibling camp in the summer. Sarah has built a close friendship with a classmate who also has a disabled brother. The two bonded instantly and understand the special situations their families each experience. Sarah has also taken to writing about life with Jake (see page 29). She and her mom dream of creating a book for other families affected by autism sometime in the future.

Meanwhile, Charlie is participating in a sibling research study at Vanderbilt since having a sibling with autism means he is at higher risk of also having an ASD. The Rogers will receive an assessment of Charlie’s development when he turns a year old, which is a full year earlier than many physicians can provide a diagnosis or referral for assessment.

“It’s rewarding to participate in the research project and be a part of the effort to better understand autism, but we are also eager to help Charlie if needed. We don’t want our questions about his development to interfere with enjoying and bonding with him, but we also want to provide him the earliest interventions possible if he is found to be on the spectrum,” Jennifer explained.

For now, Jennifer and Ansel are doing all they can to give their children opportunities to grow and feel God’s love.

The Blunck Family

Russ Blunck is PLNU’s associate athletic director.

Russ Blunck has two sons: Brodie, who will be a freshman at PLNU next fall, and Brendan, a 14-year- old who thinks he’d like to end up at PLNU as well.

Brendan was diagnosed with Asperger’s syndrome after his mom, Patty, noticed some differences between the way he behaved at almost 2 and the way Brodie had. Brendan was prone to detaching from others and wandering off on his own. He didn’t always seem to hear what people were saying to him even though his hearing was normal.

Russ attributes Brendan’s early diagnosis to Patty’s proactive approach in seeking help for him. Though Brendan was born in San Diego, the family moved to Oregon not long after. He received a medical diagnosis of Asperger’s at the Child Development Rehabilitation Clinic, which is part of Oregon Health Sciences University in Portland.

Two programs, Early Intervention (Birth-3) (EI) and Early Childhood Special Education (ECSE), made a big difference for Brendan. He was originally assessed as having developmental delays in communication and adaptive skills, which qualified him for an integrated preschool setting. He had a case manager with EI/ECSE and a speech language pathologist on his team.

“They used some really good tools, such as the ‘Creative Curriculum,’ where they targeted skills he needed to work on,” said Russ.

The Weber Family

Erik Weber (09) is a PLNU alumnus.

In summer 2009, the Viewpoint celebrated with Erik Weber, who graduated from PLNU with a bachelor’s in international development studies. Erik has achieved far more than doctors predicted when he was first diagnosed with autism at age 3.

Erik’s parents were initially told that he was intellectually challenged in addition to having autism.

Today, he is nearing completion of a master’s degree in public
administration from San Diego State University.

At age 5, Erik didn’t speak at all. His frustrated kicking and screaming did little to help his parents understand his needs and wants. In fact, his doctors recommended institutionalizing him. He remembers feeling confused about why no one understood him.

Current PLNU adjunct education professor Mary Lou Evans was Erik’s special education teacher when he was in Kindergarten. She diplomatically noted that he “wasn’t easy.”

Today, Erik makes at least a dozen speeches a year as a volunteer for various organizations and programs, including Special Olympics (he competes in track and field, soccer, and softball and does fundraising for the organization as well). His talks take him around the country – upcoming trips will include Alaska, Florida, Washington, D.C., and Colorado. Erik loves public speaking, he said, and he is excellent at it. He blends comedy and impersonations with heartfelt stories and messages in just the right way to keep his audience deeply engaged. He often concludes his speeches by talking about the human factor, a concept he learned from PLNU economics professor Senyo Adjibolosoo, Ph.D.

At PLNU, Erik served as secretary for PLNU’s Delta Alpha Pi honors society for students with disabilities. He was voted International Development Studies Student of the Year. After he graduated, the San Diego City Council named July 14, 2009, “Erik Weber Day” in honor of his accomplishments and volunteerism.

Erik’s transformation from being recommended for institutionalization to an engaging, intelligent, and successful 22-year-old was an incremental process. His mom, Sandy, and Erik’s late father, Richard, persevered in working with their son. By age 7, he began to show signs of improved development. He didn’t experience one big breakthrough but rather a slower, steadier gaining of communication, social, and behavioral skills.

Particularly helpful was introducing structure and routines. His parents found creative means of communicating with Erik, such as capturing his attention with flags or teaching him about emotions through shows such as “Thomas the Tank Engine” and “The Little Mermaid.” When Erik was older, Sandy taught him about interacting with and reading the emotions and communications of other people by volunteering the two of them to campaign for San Diego City Councilwoman Marty Emerald.

Erik’s parents were committed to spending time with him, praying for him, and ensuring he knew they loved him. Richard passed away on a business trip when Erik was 8 years old – a devastating event for any child. Thankfully, the foundation of love his parents set gave Erik many wonderful memories of his father that have helped him throughout his life. He fondly remembers their time spent together watching NASCAR, for example. Erik even wrote a book about his father, Autism for Dads: The Importance of a Father’s Love, focusing on the important role loving fathers can play in helping their children with ASDs.

Today, Erik has a quick, warm smile for everyone. Animals, birds, and children – especially those with ASDs or other learning differences – are often drawn to him, Sandy said. The bond between mother and son is evident. He hugs her affectionately and helps her with computer work she is doing for her thesis. She belly laughs at his recitations of movie lines and tears up at his accomplishments. Sandy gently reminds Erik to stay on point if he begins wandering off and provides quiet social cues such as monitoring his speaking volume in the library. He responds with a big smile and often a joke or two. They spend a great deal of time at PLNU where they feel at home. It’s a relationship filled with the joy of having come so far, filled with the promise of a bright future, and filled with the commitment to keep working together.

The Straub Family

Paul (85) and Joy (Payton) (82) Straub are PLNU alumni. Brandon and Alyse Straub are current students.

Paul and Joy Straub have three children, and two of them are on the autism spectrum. Brandon, 22, a current media communication student at PLNU, has Asperger’s syndrome, and Andrew, 16, has been diagnosed with high-functioning autism. Alyse, 20, is a junior nursing major at PLNU.

Joy has observed many differences between her sons. For instance, language comes easily to Brandon, but academics have been challenging. In contrast, Andrew didn’t talk until age 5 but is an outstanding student. Regardless of their differences, the boys are extremely close.

“They can relate to each other better than anyone,” Joy said.

“We’re two brothers you can’t keep apart,” said Brandon.

Brandon’s teachers first noticed that he was struggling with communication and social skills. His original diagnosis came from a psychologist who believed he had “receptive communication disorder.” It wasn’t until Brandon was in the 8th grade and the family moved to Bishop, Calif., that he was diagnosed with Asperger’s.

Brandon’s diagnosis didn’t make his high school years any easier. He was regularly ridiculed. Kids threw things at him at the bus stop, made fun of his faith, and threatened him.

“He’s finally found acceptance at Point Loma,” Joy said. “He has friends. He’s the happiest he’s been in his whole life.” Brandon is passionate about art and movies (as long as there is no swearing, which he strongly opposes). He loves animated films and might like to make animated Christian movies or even create a comic. He’s working with a counselor from the Department of Rehabilitation to find an internship after he graduates.

Andrew’s experience has been substantially different from Brandon’s. Andrew received speech therapy from age 2 until 7th grade, which helped him to not only learn to speak but also to better understanding non-literal elements of language and conversation. Both Brandon and Andrew received neurofeedback therapy, and Joy said that while it didn’t make much difference for Brandon, it seemed to help Andrew a lot, possibly because he was younger. And while classmates were cruel to Brandon, they have rallied around Andrew. Recently, the kids on Andrew’s basketball team made sure he had the chance to score a basket and then gave him the game ball.

For Alyse, having two brothers on the spectrum hasn’t always been easy, but she believes they have made her a more patient person. In high school, when she was assigned a paper about whom she admires most, she wrote it about her brothers.

“They are both really loving and so sweet. People just don’t always see that,” she said.

It hasn’t been easy for Paul and Joy either. There were many late nights helping the boys with schoolwork or other issues. Joy sometimes felt frustrated, embarrassed, or sad. Both she and Alyse said they have been in tears at times. But there have been wonderful times, too.

“I would say to parents: if you can get yourself out of the mix, then that’s when you can help the kids,” Joy said.

“My dad is stern but very kind,” Brandon said. “My mom – she’s a very great woman.”