2015-09-25 / Community

Seeking awareness of autism

By Duke Harrington Staff Writer


Kennebunk mom Karleen Frost poses with her oldest son, Donald, 14, amid the handcrafted items she makes to help youngsters living with autism cope with everyday life. Frost is raising three boys diagnosed with the condition, and was to have led a class at Adult Education of the Kennebunks and Arundel to share her experiences, until it was canceled by the school department Sept. 21. She is looking for other ways to help others understand autism and other sensory processing disorders, and learn how to locate available resources. (Duke Harrington photo) Kennebunk mom Karleen Frost poses with her oldest son, Donald, 14, amid the handcrafted items she makes to help youngsters living with autism cope with everyday life. Frost is raising three boys diagnosed with the condition, and was to have led a class at Adult Education of the Kennebunks and Arundel to share her experiences, until it was canceled by the school department Sept. 21. She is looking for other ways to help others understand autism and other sensory processing disorders, and learn how to locate available resources. (Duke Harrington photo) KENNEBUNK — Karleen Frost knows something about pressure.

She knows what it feels like when a comforting pressure is applied, and she knows what it’s like when an incredible weight is lifted. At least in part, that’s because Frost is raising three boys with autism.

It’s been a challenge and, in some ways, a blessing. Frost has spent countless hours over the past decade working to understand the condition, particularly the sensory input issues that are at the heart of autism. During one 20-month stretch, Frost has 22 appointments with specialists per month with one son alone. Still, although she acknowledges moving to Kennebunk five years ago to take advantage of the special education services not available in her native Rhode Island, Frost says finding available resources has sometimes been a struggle.

So, when she was invited by officials at Adult Education of the Kennebunks and Arundel to lead a series of workshops on sensory input issues, Frost jumped at the chance.

However, on Monday, RSU 21 Superintendent Katie Hawes advised Frost via text message that her workshop series had been canceled, just days before they were scheduled to start.

“While I appreciate your experience, you don’t hold the needed credentials to provide the first seven workshops as described in the flier,” Hawes wrote. “The final workshop is really not a workshop, but a session that may promote some businesses and therapists over others. As a school district, we really can’t begin recommending certain therapists or businesses and not others.”

That final night was one Frost was particularly interested in, saying it would be “an evening to learn what resources are available in our community to help special needs families,” to include “informational handouts to help families find speech therapists, occupational therapists, counselors, and case managers.”

In her note, Hawes also said that only one person had signed up for just one of the eight sessions offered by Frost. For that reason, and because Frost lacked professional credentials, the classes would be canceled, Hawes said.

“If there is a need in the community for the types of sessions offered, we will approach our occupational therapist, speech language pathologist, or psychologists,” she wrote.

Later on Monday, Hawes said there are only about 30 students in RSU 21 diagnosed with autism, spread out fairly evenly across schools and grade levels. Although other Maine school districts have shown a marked spike in students with autism in recent years, the numbers have held fairly steady in RSU 21, Hawes said.

According to the Maine Children’s Alliance, the number of students in Maine diagnosed with autism spectrum disorders doubled between 2005 and 2012, to 2,646 cases statewide. In the Portland school system, autism cases shot up 290 percent, from 31 diagnoses in 2004, to 121 in 2013. That tracks ahead of the national trend.

Last year, the U.S. Centers for Disease Control and Prevention reported a 120 percent increase since 2000 in the prevalence of autism among U.S. children — from 1 in 150 births to 1 in 68. Today, it is believed there are 1.5 million people in the U.S. struggling to cope with the symptoms of autism.

That’s why Frost wanted to help, because she’s certain there are local families that may not know they have a child with autism, or, maybe worse, knowing, but are unprepared to contend with the life under those special circumstances.

And, if there’s one thing Frost has to share, it’s experience.

“It is true, I did not go to college for occupational therapy, but I have had more hands-on training with sensory issues than most doctors and some OTs (occupational therapists), as I live with sensory processing disorder times three every day,” she explained. “Sometimes, ‘life experience’ trumps a college education.”

Sensory

When Frost’s oldest son Donald, now 14, was 4 years old, he would come home from school in Rhode Island and “literally bounce off the walls.”

The school down there wouldn’t help us because their OT only handled fine motor skills,” Frost recalled. But what Donald, and later his brothers, Karl, 9, and Kyle, 7, needed was help processing sensory input. That confusion over input levels, either too much or too little, can make youngsters with autism incredibly fidgety, a fact that became apparent almost as soon as Frost and her family moved to Kennebunk on the advice of her in-laws, who touted the special needs care at local schools.

“Two weeks into the school year after we moved here to Maine, they called us into a meeting,” Frost remembers. “The occupational therapist said, ‘I watched Donald for 15 minutes. He moved 17 times.’ I was like, thank you, now somebody sees what I see.”

“One thing two of Frost’s sons were able to get in RSU 21, which was not available to them before the move to Maine, was a “Section 504” plan. As opposed to an IEP, or Individual Education Plan, which matches a special needs child to services of varying kinds, a 504 makes accommodations for the student in the classroom. Thus, all of the Frost boys are mainstreamed into the regular classroom.

That said, Frost said not all teachers have “got” her children, or the need for an IEP. But, as she explains it, “imagine how you feel if you’re three hours past lunch. All you can think about is how hungry you are. You can’t relax and concentrate.

“For a child with autism it’s the same way,” Frost said. “For a sensory-based child, their body is hungry, and if the body is not getting the sensory input they need, that their body is craving, they can’t sit still and concentrate, and so they can get labeled a trouble maker, or an instigator. But, really, it’s just a case of their needs not being met.”

Over time, Frost learned how to help her children cope. Because she could not always be there to provide the gentle hand on a shoulder that could calm a son whose body craved that pressure on the skin, she began to make weighted blankets and shawls. Wearing such a blanket around the shoulders, or on a lap, as simple as it may seem, can sometimes be all the sensory input a child with autism needs to relax and concentrate on his or her studies. For others, it was a different blanket of many textured fabrics that did the trick. Use of such of blanket helped one boy overcome an extreme aversion to denim, such that he was able to wear jeans for the first time, Frost said.

Eight years ago, Frost began to sell some of the items she had learned to make, starting a home occupation business called Karleen’s Ideas that she now runs from her front porch.

“Today, the Hasbro Children’s Hospital early intervention program is a regular customer of Frost’s weighted blankets, while RSU 21 has recently begun ordering her weighted lap pads.”

But Frost’s concerns go beyond merely wanting to help others cope. She also wants others in her situation to understand what services are, and are not, available.

“One issue for the Frosts is their decision to forego a popular form of supplemental insurance. The Katie Beckett program, named for a girl who was 3 years old when President Ronald Reagan signed it into law as Medicaid reform, helps provide additional insurance to children cared for in the home. Previously, a child had to be institutionalized to receive financial help from the government. But the program has a bit of a Catch-22.

“In the state of Maine you can’t get case managers unless you have this insurance, and it’s a long process to get it,” Frost said. “The application is 60 pages long and you usually get turned down two or three times. “They make it so hard that we chose not to go that route.” Still, Frost figures others will want to know about the program, and how to apply.

“So, we do everything on our own and, in doing so, we don’t have any service to tell us what other services are available,” Frost said. “So, it’s kind of find it on your own or discover it through the school system.”

Each of Frost’s boys has different sensory input issues related to autism. The younger boys tend to require greater sensory input, whereas Donald needs to avoid bright colors and loud noises, issues he’s learned to overcome to pursue an interest in theater.

“I’m not the typical autism mom. I push my kids way out of their comfort zone,” Frost said. “Even where they have a sensory issue, we push them in those situations to overcome it.”

Frost may have been deemed unqualified to lead an adult education class, but she has had some success in sharing her story.

Last year, Frost spoke at a National Alliance of Mental Illness conference to help parents understand how a child with a good “sensory diet” of regulated inputs of sight, sound and touch can concentrate better in school. She also spoke to University of New England occupational therapy students about how she designs and uses a good “sensory diet” to help her sons.

And, if RSU 21 may have pulled back, Frost has at least one fan.

“I feel completely normal,” Donald said. “But that’s all thanks to this lady right here,” gesturing toward his mom. “If not for her, I doubt I’d be doing theater, or much of anything else. I’d probably be wandering around school doing just basically nothing. She’s a truly inspirational lady.”

Meanwhile, Frost says she will continue to reach out to the community on her Facebook page, “Red on Autism,” and in other ways, to share her family’s experience.

“I just want to help children,” she said. “And I want to help parents and families understand the sensory piece. I want to help them get the relief I got when I learned about it. If the child’s sensory needs are met, they can cope better, they can sit through class. They can pay attention and learn more.”

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