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Being 'autism mom'

Being a parent is tough enough — but what happens when your child’s condition draws stares?
By: Sena Christian, Staff Reporter
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Could iPads be therapy for autistic kids?

Recent studies and news reports describe the iPad as a breakthrough therapy tool, transforming the lives of children with autism.

According to a segment on “60 Minutes,” the iPad’s easy touch, swipe screens and specially designed applications — on language, eye contact, social cues and more — are “unlocking the isolation” experienced by autistic people.

During a Eureka Union School District board meeting in November, school board candidate-elect Renee Nash donated more than $22,000 worth of iPads to Ridgeview Elementary School in Granite Bay, which went to teacher Kellie Whitlow’s fifth/sixth grade class to be used by all students on campus.

Nash and her husband had donated another bulk of tablets to the school a couple years ago, which were piloted in Abby Burke’s fifth/sixth grade class, at the direction of district administration. Nash’s triplets are now in Burke’s class and the teacher endorsed Nash and contributed $100 to her campaign.

“I specifically asked for the (second) donation not to go to a classroom my children are in,” Nash told the Press Tribune. “I’d rather have other kids benefit from the (iPads). … I wanted to do something that would benefit a lot of children, not just our children.”

Ridgeview’s Parent Teacher Club, run jointly with Oakhills School, is among the wealthiest of all elementary and middle schools in Roseville and Granite Bay with assets of nearly $90,000 in 2010, according to its tax form filed in 2011.

School board trustee Eric Bose said the first iPad donation did not follow proper protocol and was never formally approved. He said the board made sure to properly accept the donation the second time around.

But for Granite Bay mother Kim Christensen, the second donation was still hurtful.

 “I was like, what?” Christensen said. “That stung, I will be quite honest.”

She had tried for months to secure an iPad through the district for her autistic daughter, Brynne, after hearing about how the technology was being used for therapy. A Eureka employee suggested Brynne try an iPad, on loan, for a two-week trail. The results were promising, so the district suggested extending the timeframe and collecting more data.

“It seemed like so much bureaucracy, so much red tape.” Christensen said. “I didn’t want to wait, so we just bought her one for Christmas.”

Although Nash’s donation was unanimously approved by the board, Bose raised concerns about equal access and ensuring as many kids as possible benefit from the new technology. He also wanted reassurance that the district can afford the upkeep.

“The board was told the plan was to ultimately acquire iPad labs for each grade level at each campus, although no plan regarding this had ever been brought to the board for consideration,” Bose told the Press Tribune.

~ Sena Christian

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Common signs of autism include:

  • No babbling or pointing by age 1
  • No single words by 16 months or two-word phrases by age 2
  • No response to name
  • Loss of language or social skills
  • Poor eye contact
  • Excessive lining up of toys or objects
  • No smiling or social responsiveness
  • Impaired ability to make friends
  • Impaired ability to initiate or sustain conversation with others
  • Absence or impairment of imaginative and social play
  • Stereotyped, repetitive or unusual use of language
  • Restricted patterns of interest that are abnormal in intensity
  • Preoccupation with certain objects or subjects
  • Inflexible adherence to specific routines or rituals

Source: National Institute of Neurological Disorders and Stroke

 

Kim Christensen’s daughter wasn’t potty trained until last year, after she turned 12 years old.

The child didn’t sleep through the night until the age of 9. The Granite Bay family rarely goes on vacation and only recently became brave enough to venture into public together for dinner.

“It’s so hard to go out into the community and people stare at her and make rude comments and there’s sometimes just not a lot of compassion,” said Christensen, who gave up a career in the software industry to care for her daughter.

Every trip outside could be a battle. One time Christensen’s daughter sat down in the middle of the busy Auburn-Folsom Road and Douglas Boulevard intersection and refused to budge. There’s also the hand-flapping to contend with — and the unwanted looks the behavior draws.

Brynne Christensen, 13, is autistic. Autism spectrum disorders range from mild to severe symptoms, skills and levels of impairment, according to the National Institute of Mental Health.

“Because Brynne’s autism is so severe, I either see the best in people or the worst, and (the worst) is always the adults,” Christensen said.

In addition to managing Brynne’s behavior, keeping her safe and living in a world that doesn’t fully understand autism, her parents also deal with the ongoing struggle of giving her an education. Eureka Union School District is Brynne’s home district and, as such, is responsible for ensuring her educational needs are met, which hasn’t always been an easy process.

In the dining room of her house on a rainy December day, Christensen chokes up talking about the many nights she lays awake in bed, dreading how there will be no one to look after her child when she’s dead and gone.

Mom’s two sons are autistic

Parents of special education students in the Eureka Union School District used to have a formal support group, but that ended during the brief tenure of former Superintendent Dr. Tim McCarty, who resigned in February 2011. Now parents are left to navigate the system alone.

“You really need to work to advocate for your child,” said Lisa Erickson, of Granite Bay. “No one comes to you and says, ‘Here is the menu of services we have.’ You have to go out and find them.”

Two out of three of Erickson’s sons have autism. Her youngest son, Cody, was diagnosed at 4 years old and he’s been on an individualized education plan since preschool, which is mandated by the federal Individuals with Disabilities Education Act to define methods for reaching educational goals. Now in sixth grade at Ridgeview Elementary School, 11-year-old Cody gets good grades, is working hard to make friends, is fully verbal and becoming self-aware.

“But with self-awareness comes, why am I different?” Erickson said.

Her older son, Brandon, was diagnosed in first grade. Brandon, who taught himself to read at 3 years old, is now 14 and in eighth grade at Cavitt Junior High School and no longer requires special education services. Next year, he’ll attend Granite Bay High School, which may present more challenges to address. His mom calls Brandon incredibly smart.

“That kid can take on the world,” she said.

But he’s not very social and doesn’t often get invited to birthday parties.

Erickson worries about the impact of her two boys’ autism on her oldest son. The disorder can also strain marriages, she said, when partners neglect one another — although recent studies refute the notion that parents of autistic children are more likely to divorce.

“I’m thankful for autism because it has made me a better mom, a better parent,” Erickson said. “You really appreciate the little things … like the first time Cody said he loved me.”               

No cure exists

When Brynne was 11 years old, her parents got a letter from the district stating their daughter’s special education services would be terminated and that she needed to be in school for the full day. Brynne had never attended school for an entire day before because of the severity of her behaviors.

Her parents hired a special education attorney to get her services re-instated. The lawsuit didn’t go to trial, Christensen said, and both sides agreed to increase Brynne’s school day depending on how well she was doing. As part of the plan, Brynne was not allowed to “drop” to the ground and stay there for more than five seconds, as she’d done in the middle of that busy intersection.

But one day her mom observed staff failing to correct her dropping behavior as agreed upon, so the parents filed a compliance complaint with the California Department of Education and won, Christensen said. Brynne now attends Placer Learning Center in Granite Bay.

About 10 percent of a school district’s student population requires special education services, said Eureka Union’s Director of Student Services Kristi Ellison, a former principal who accepted her current position in 2011. Christensen sees Ellison’s hiring as a move forward for the district, which hasn’t always had the best reputation when it comes to serving children with special needs.

School districts — and society at large — may need to figure out how to better serve autistic children because the disorder isn’t going away anytime soon. Autism is the fastest-growing serious developmental disability in the United States, affecting 1 in 88 children.

A recent study by University of California scientists suggests fetal and infant exposure to pesticides, household chemicals and viruses partly explains the increased rate of autism over the past decade. Scientists are still searching for other explanations. No cure exists, only drugs to treat side effects such as anxiety and depression.

As for Christensen, she continues advocating for her daughter while fending off societal misunderstanding, and sometimes disdain, of her daughter. But she can’t do it all.

“I only have a limited amount of energy and I just can’t direct it to educating people,” she said.

Instead, the mother focuses day in and day out on making her daughter’s quality of life better.