Military family copes with autism
Autism awareness is personal for the Rose family, featuring Lily, Jake and Capt. Alex Rose. (Photo by Army Maj. Christian Deichert)
by Kelly Deichert
Air University Public Affairs
4/6/2012 - MAXWELL AIR FORCE BASE, Ala. -- As houses and buildings around the world shined the light on autism Monday, one porch in Montgomery lit a blue lantern for Jake Rose, a 5-year-old with autism.
Like children his own age, Jake loves "The Backyardigans," enjoys eating cucumbers and watermelon, and carries a stuffed dog named Puppy.
"For whatever Jake's challenges, we're really lucky," said Capt. Alex Rose, an instructor at the Air Force Judge Advocate General's School. "We've been exceptionally lucky that Jake's an affectionate child."
But unlike other boys his age, Jake has a limited vocabulary and doesn't speak in complete sentences. He has typical traits of autism, such as difficulties in social interaction, verbal and nonverbal communication, and repetitive behaviors called stimming.
The symptoms of autism vary with each child along a spectrum of traits. About 40 percent have average to above average intellectual abilities, according to Autism Speaks, an advocacy group.
In 2008, the United Nations General Assembly declared April 2 to be World Autism Awareness Day, and homes around the world featured blue lights in support. Raising awareness is something the Roses embrace.
"I'm going to be his No. 1 advocate," said Lily Rose. "It's the sense of wanting to protect your child."
In the summer of 2009, Jake was about 2 and a half, Capt. Rose was deployed and Mrs. Rose was pregnant with twins Max and Miriam. The Roses remember Jake being advanced, even saying "mom" and "dad" before other children his age.
Then there was a sharp drop off, and Jake started to exhibit speech and social delays. He stopped speaking and wouldn't answer to his own name. "I felt like I had a really hard time disciplining him," Mrs. Rose said.
When someone mentioned autism to Mrs. Rose, she was reluctant. She knew children developed at different rates and didn't question the changes in her son.
"At the time, I was angry hearing it," Mrs. Rose said. "I didn't want to be pressured to diagnose a kid at 2 and a half."
Mrs. Rose faced a situation common to military spouses. She was alone, away from her family and her husband.
"When you have more than one child, you can compare," she said. "It was hard since no one was there to teach me."
The official diagnosis came quickly, something for which the Roses were unprepared.
"There was a part of us keeping our fingers crossed," Mrs. Rose said. "Now there was a word for it, and we knew what was going on." They could no longer deny the reality - their son is autistic.
"The worst thing is you feel very alone when the diagnosis is made," Capt. Rose said.
Mrs. Rose remembered seeing other children interact with their parents. "It would break my heart. Why couldn't I do that with my kid?" she asked herself.
The Roses want the best for Jake and hope everyone will see the loving boy they know he is.
Working with the diagnosis
Once Jake was diagnosed, the Roses researched autism, learning all they could about how to help their son lead the best life possible. By age 3, Jake was enrolled in applied behavior analysis, or ABA, therapy.
"We now know the importance of early diagnosis and intensive early intervention in improving language, sociability and cognitive function and in relieving challenging behaviors that interfere with daily function, education and quality of life," said Michael Rosanoff, Autism Speaks associate director of public health research and scientific review.
Jake even has his own iPad, complete with an Elmo cover, full of apps designed for autistic children. "He's a very smart kid. He's a problem solver," Capt. Rose said.
A challenge for parents of autistic children is learning how to see the world through their children's eyes.
"With autism, you have to go against instinct," Mrs. Rose said.
For example, when an autistic child has a tantrum, parents need to walk away and ignore the child. They learn not to draw attention to the negative, which can increase stress levels for the child.
"We're constantly evolving, parenting a child with special needs," Mrs. Rose said.
Having a child with autism presents a variety of challenges for military families.
Before the Roses moved to Montgomery, they worked with the Exceptional Family Member Program and did their own research, finding therapists with ABA training and opportunities for autistic children.
One of those programs, the Montgomery Area Nontraditional Equestrians, or MANE, offers therapy for special-needs children. While on horseback, the equestrians ask Jake to complete certain tasks, such as counting or matching, before he can take the horse to the next station.
Jake also has separation anxiety. The family knows that when Capt. Rose has a temporary duty assignment, Jake will need lots of attention.
Mrs. Rose started the Puzzle Pieces Facebook group to reach out to parents also facing autism. "I wanted to be proactive, especially for people with children recently diagnosed," she said.
The Roses also are proactive about sharing Jake's situation with people, educating others on Jake's behavior. "I don't want to be judged as a family," Mrs. Rose said.
Military families looking for more information can visit http://www.autismspeaks.org/military-families