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One parent’s view: Caring for a child with autism ‘becomes a way of life’

Dan and Carey Tedesco’s son Evan, who is four and a half, was diagnosed on the autism spectrum at just 19 months of age. And even though Evan’s early diagnosis has enabled him to have early intervention programs, Dan Tedesco says making sure all of Evan’s needs are being met can be a challenge.

The hallmarks of autism include trouble with language and communication, trouble with social relationships and understanding social engagement, and various hyper- and hypo-sensitivities, such as hypersensitivity to light, touch, or certain tastes or smells.

“Evan demonstrates all three of those, and it’s a real challenge getting through every day,” said Dan Tedesco, Evan’s father. “Each of these symptoms exacerbates the situation, and you can have a downward spiral very quickly in certain situations.”

Evan is very sensitive to different visual and spatial conditions, meaning a new building or different surroundings can upset him.

Dan recently took Evan to a new grocery store, and instead of the typical store entrance, the father and son walked into an atrium with a glass ceiling and wood beams.

“The visual structure and setting threw him off—he got very scared and actually ran out into traffic,” Dan said. “The more scared he got about it, the less capable he was of regulating himself and his communications.”

He added: “I think that when kids have language problems or sensory problems, and what’s called self-stimulatory behavior, they tend to retrench into their own little world doing these activities and routines that only have meaning to them.”

One of the red flags for autism is when a child will play with a toy for sensory stimulation, such as banging a toy on the ground repeatedly instead of playing with it in the way it’s meant to be used.

“These things make it difficult as they go into repetitive patterns—it’s hard to pull them out, because they find comfort in it,” he said.

One main technique that speech and occupational therapists use and recommend for children with autism is to use pictures to communicate.

“Just as you would rely on signs or icons if you were traveling in a foreign country and didn’t understand the language, it’s the same principle at play in this technique,” Dan said.

In the autism field, the picture system is knows as a Picture Exchange Communication System (PECS). A PECS lets parents print or buy cards with various images of day-to-day activities, food, or clothing on them.

A family taking an airplane trip might show a child with autism pictures of a suitcase, an airplane, and a security gate.

“We use pictures to apprise Evan of upcoming sensory transitions and novel experiences, in addition to facilitating communication,” Dan said.

Families of children with autism frequently create picture schedules using the PECS system. Children can see each step of a trip or a daily routine to prepare them for sensory transitions.

“No matter how much we told Evan in words, he couldn’t process it,” Dan said. “A picture is worth a thousand words.”

The problem with the PECS is that it can be cumbersome to print and laminate cards or carry boxes full of cards to make sure that the necessary cards are available on a trip or errand, Dan said.

“We didn’t always have the right image at the right time, and lots of the images are stick figures and are institutional-feeling,” he said.

When the Tedescos used the cards in public, people around them often stared and made the family feel awkward, which unnecessarily stigmatized Evan’s condition.

“[PECS] is a great system, but it’s paradoxically hardest to use in the situations where we needed it the most—on the go,” Dan said. “We want Evan expanding his horizons and experiencing the world.”

To that end, the Tedescos created iPrompts, a mobile PECS system that is accessible on an iPhone or iPod Touch. Having images on the go helps Evan immensely, Dan said.

“Evan deserves to be integrated with the rest of society, and he shouldn’t be stigmatized for using these kinds of things,” he added.

Evan attends some type of educational program or therapy seven days a week. Monday through Friday, he attends a pre-K special-needs program where he is integrated with both special-needs and mainstream children.

In that setting, Evan receives various therapies. The Tedescos also have secured private therapies, including speech, occupational, and behavioral, and even aqua therapy and horseback riding.

“It becomes a way of life,” Dan said. “When your child is first diagnosed, you’re obviously in disbelief and denial, you’re upset, and as you start to pick yourself up and put one foot in front of the other, you realize there’s no silver bullet. You need to do everything; it never stops, it needs to become a way of life.”

He added: “We’re thankful for the skills Evan has. He’s a great kid—it’s an adventure.”

Parents also will run into problems with insurance companies as they attempt to secure coverage for autism therapies.

Insurance companies will say that autism treatment is an educational problem, and schools will say that some treatments fall under the medical category.

“Obviously, parents just want help,” Dan said.

The organization Autism Speaks has lobbied state legislatures to mandate insurance coverage for therapies for children on the autism spectrum, and the effect is starting to snowball in many states.

“The problem is that with the explosion of autism spectrum disorders—it’s an epidemic—schools had financial problems even before the recession, and they are in a hard spot to give the resources that are required,” Dan said.

And while the Individuals with Disabilities Education Act states that children with disabilities are entitled to a free and appropriate education, the law leaves much room for interpretation and is vague in some crucial areas.

Many children with autism need around-the-clock care or need different equipment for occupational therapy to support their learning styles in school: Children who are hypersensitive to noise might need headphones, and children who can’t talk might need a voice output device.

“At the end of the day, everybody who is in the room cares about the child. Parents, the special-education staff—everyone’s there for the right reasons to start with,” Dan said.

The resources available to help Evan don’t completely take away the Tedescos’ worries.

“My life took a U-turn when my son was diagnosed. It’s amazing how resourceful you become—you pull on all of your skills and contacts to help you do what you need to do. I hope a cure is identified, but until that happens, I hope the younger parents who are coming after me have an easier time figuring out what they need to do,” Dan said.

“It’s going to take the internet, network technology, communication, sharing ideas, and being leaders to get the right resources for the problem, get the right debates going, and direct research in the right way,” he added.

“I worry about Evan’s challenges, what it’s going to be like if I can’t get him all the resources he needs. Where should I put my time and energy? How do I make these decisions? At the same time, I’m out in public, he’s having a tantrum, and people are looking at me like I’m a bad dad. I’m doing the job of 10 dads, but no one sees that but me.”

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