2016 Indy’s Special Child

Priceless Pics Tips for getting the best photos of kids on the spectrum

LOCAL ADAPTIVE PROGRAMS TEACHING COMPASSION HOW TO DEVELOP THIS IMPORTANT SKILL

BEST PLAYGROUNDS for Kids with Autism Who Are Runners

BROUGHT TO YOU BY: 1 Damar Services, Inc. W W W. I N DY S S P E C I A L C H I L D . C O M

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Area venues offer support for those with sensory issues

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BEST PLAYGROUNDS FOR KIDS WITH AUTISM WHO ARE RUNNERS

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A guide to local play spaces that have safety in mind

PRICELESS PICS

Tips for getting the best photos of kids on the spectrum

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TEACHING COMPASSION TO KIDS WITH AUTISM

How can this important social skill be developed?

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ANIMALS AND KIDS WITH AUTISM

The unique relationship that can develop between the two

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AUTISM AND BULLYING

Teaching children on the spectrum to take a stand

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AUTISM: A GROWING NATIONAL CONCERN

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A SENSORY-FRIENDLY EXPERIENCE

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SIX TIPS TO HELP YOUR CHILD WITH AUTISM

THE FINANCIAL STRAIN OF AUTISM

Accessing all the available resources

TANTRUMS VERSUS SENSORY MELTDOWNS

Misinterpreting the cause of “bad” behavior

ADAPTIVE PROGRAMS

Area recreational programs that get everyone in on the action

AAC APPS AND AUTISM

How the latest technology is helping kids “find their voice”

S TA F F PUBLISHER Mary Wynne Cox | Mary@indyschild.com

E D I TO R Karen Ring | Karen@indyschild.com

D I G I TA L P U B L I S H E R Wendy Hasser | Wendy@indyschild.com

D I G I TA L E D I TO R Jeanine Bobenmoyer | Jeanine@indyschild.com

AC C O U N T E X E C U T I V E

Introducing Indy’s Special Child

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or 32 years, Indy’s Child magazine has been a trusted resource for parents, educators and child care providers in the Indianapolis area. Through the years, we have evolved to keep pace with the changing face of parenting. Today, in addition to our monthly print publication, we also keep you up to date on the latest parenting tips, trends and local events through our website and numerous social media channels.

We have also worked hard to develop quality content that meets the needs of ALL parents. As a family-owned publication, we understand that parenting is not a one-sizefits-all endeavor, and that there are many who are facing the unique demands of parenting children with special needs. In 2010, we launched our award-winning special needs section that is featured in every issue of Indy’s Child. Now, with the support of Damar Services, we are proud to introduce our premiere issue of Indy’s Special Child, our first stand-alone magazine devoted to children with special needs, their parents and caregivers.

Jennica Zalewski | Jennica@indyschild.com

GRAPHIC DESIGNER Kahlie Cannon | Kahlie@indyschild.com

B U S I N E S S M A N AG E R Roxanne Burns | Roxanne@indyschild.com

In this initial issue, we focus on the diverse challenges faced by parents of children on the autism spectrum. Inside, you will find topics ranging from combating the financial strain of autism to finding adaptive programming that gets every child in on the action. You will hear from area experts, like those at Damar Services, as well as local families who, like you, are confronting the world of autism every single day.

Our mission at Indy’s Child has always been to support parents throughout their journey by keeping them connected to all of the valuable resources our city has to offer. The launch of Indy’s Special Child takes this one step further – offering a dedicated resource to those who give so much of themselves day in and day out.

A special thanks to Damar Services for making this premiere issue possible. We hope you enjoy all that is has to offer, and look forward to your feedback. For more of our award-winning content covering a wide range of special needs, find us online at indyschild.com/indys-special-child.

CONTRIBUTING WRITERS Carrie Bishop, Damar Services, Inc., Maggie Loiselle, Karen Ring

C O N TAC T U S indyschild@indyschild.com

COPYRIGHT Indy’s Special Child is published annually.

Copyright 2016 by Midwest Parenting Publications, LLC. All rights reserved.

Reproduction without permission is strictly prohibited. Distribution of this magazine does not constitute an endorsement of products, commentary, or services herein. A number of articles in this issue of Indy’s Special Child originally appeared in Indy’s Child magazine.

With the exception of updating pertinent contact information, the original content remains in tact to preserve the integrity of the article.

For information visit indyschild.com.

MA RY WY N N E COX PUBLISHER M a r y @ in d ysc h ild .co m W W W. I N DY S S P E C I A L C H I L D . C O M

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Six Tips to Help Your Child with Autism

BY DAMAR SERVICES, I N C .

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f you’re a parent with a child on the autism spectrum, you may find yourself at a loss as to how to actually help your child improve their communication and life skills. While early intervention is key to treating autism, most parents are not trained ABA (applied behavior analysis) therapists. And, while learning all you can about autism will greatly benefit your knowledge base, every family can benefit from tips to make life a bit easier at home.

on the autism spectrum, as well. When a child learns a new skill or behaves positively in a new environment, meet that accomplishment with praise and perhaps a reward.

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Recognize that there is a reason for every behavior. Pay attention to the gestures and expressions your child uses when they are tired, hungry or overstimulated. When you see those expressions coming to light, acknowledge them and work to meet the need. It is very frustrating to not be understood – and often that is a common problem for children.

Your understanding of their communication style will go a long way in helping your family work as a team.

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Sensory sensitivities are real, so work to mitigate them. Many children with autism are hypersensitive to light, sounds, touch, tastes, etc. Keep this in mind as you plan trips and outings.

Choose venues in non-peak times and call ahead to ask if they have a special “quiet place” available if you need a safe place for your child to unwind.

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Your child is a child, so make time for fun. While your child may have a very complicated disability, your child is a child first. All children like to have fun and the nature of fun is unique to each child, whether or not they are on the autism spectrum.

Invest time in activities that are fun for your child and your family.

With that in mind, the following tips can make life at home a bit more manageable for families with children on the autism spectrum: •

Be consistent. What your child learns in ABA therapy should be carried over into the home. As an active participant in your child’s ABA therapy program, you can help your child make great strides. For example, if your child is non-verbal and learning sign language at ABA or in school, teach sign language to the rest of the family, so that everyone can communicate.

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Keep a regular schedule. Children with autism benefit from a daily routine. Create one that works for your child and try your best to maintain that schedule regularly. Disruptions in the schedule can wreak havoc, so when there is a change in the schedule, take plenty of time to prepare your child in advance.

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Reward good behavior. We all love to hear when we are doing a good job. This positive reinforcement applies to children

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For more information about autism services or ABA therapy, please visit damar.org/ABA.

A Sensory-Friendly Experience AREA VENUES OFFER SUPPORT FOR THOSE WITH SENSORY ISSUES

BY KAREN RING

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or parents of children on the autism spectrum, there is nothing more important than knowing their children are in a safe, supportive environment were they are free to be themselves.

Thankfully, many area theaters, museums and entertainment venues are offering programs and support services that reflect the needs of children and adults with autism and other sensory challenges. Below we highlight just a few.

A successful visit to Conner Prairie starts by clicking on the Accessibility tab of their website (connerprairie.org/ Plan-Your-Visit/Accessibility).

There you will find the Complete Guide to Visiting Conner Prairie, which features stories told from a child’s point of view that outline what to expect at each exhibit area.

It can be printed and shared with your child prior to your visit to help him choose which areas he would like to visit.

Online, you will also find a Sensory Friendly Tip Sheet and Sensory Friendly Map highlighting quiet spots located throughout Conner Prairie. These locations offer a quiet space with a sensory kit that includes a weighted blanket and soft sensory toys, among other items.

The Children’s Museum of Indianapolis also offers Sensory Stories on their website (childrensmuseum.org/visit/accessibility/ sensory-stories) to help prepare you and your child for some of the sights and sounds you will encounter in the museum.

A Sensory Map is available online, as well as at that museum’s Concierge Desk.

These maps include symbols that indicate

if a particular area is loud, quiet or bright to help guide you through your visit.

Designated quiet areas on each floor of the museum are also marked. Fidget Toy Kits and noise-reducing headphones are available at the Concierge Desk to be used as needed throughout your visit.

The Indianapolis Colts worked in conjunction with the Damar DNA program to create their Sensory Stories, which include full-color photos and descriptions of events that may take place during a game. A limited number of weighted blankets and noise cancelling headphones are available for use during games.

Learn more at prod.static. colts.clubs.nfl.com/assets/ docs/sponsor/damar.pdf.

A number of area movie theaters offer special sensory-friendly screenings where the lights are turned up and the sound is turned down, so kids can feel free to get up, dance, walk, shout or sing. Both AMC Castleton Square 14 and AMC Indianapolis 17 offer sensory-friendly films on the second and fourth Tuesday and Saturday of each month. Check your local theatre listings for specific show times.

Studio Movie Grill offers free lights up, sound down screenings of family-friendly movies for children with special needs and their siblings on select dates. Adult tickets for these screenings are available at pre-noon pricing. Visit studiomoviegrill. com/Movie/Film-Series/Special-NeedsScreenings to see a list of upcoming screenings.

Hamilton 16 IMAX + GDX in Noblesville offers monthly lights up, sound down screenings of first run films typically on the first Saturday of the month.

A select number of tickets are free, thanks to a sponsorship by WestPoint Financial.

Learn more at goodrichqualitytheaters.com/ programs/lights-up-sound-down/.

When it comes to burning off energy, rain or shine, The Park indoor playground at Traders Point Christian Church in Whitestown has a little something for everyone. A section of this massive play space is devoted to children with sensory sensitivities, and includes a sensory swing.

The Park is open daily and is free to the general public. For hours, visit tpcc.org/the-park-at-traders-point/.

These are just a few of the local venues that offer programs and services to support the autism community. When visiting a new location, check to see if they offer sensory guidelines on their website (most commonly found under Accessibility). If you don’t find what you are looking for, ask. Questions foster awareness, which goes a long way in ensuring children on the autism spectrum can feel safe and supported wherever they go.

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Best Playgrounds for Kids with Autism Who Are Runners A GUIDE TO LOCAL PLAY SPACES THAT HAVE SAFETY IN MIND

BY MAGGIE LOISELL E

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very parent has felt it, that moment of panic when you lose sight of your child on a busy playground. Maybe you were helping their sibling or talking to a friend, but when you look up, your child isn’t where you expected them to be.

It’s a common scenario, but one that can be especially nerve-wracking for parents of those children with autism who have the tendency to dart off when they feel overwhelmed, upset or uninterested.

“Sensory or behavioral issues are most often why children escape. They may get overwhelmed by the noise, crowds, bright sun and hot temperatures, or a child may wander away to find a preferred item or preferred activity,” says Barb Fogarty, Research Associate and Educational Consultant at the Indiana Resource Center for Autism at the Indiana Institute on Disability and Community at Indiana University. “Our children can get very focused on something, like ‘Grandma has a pool, and I want to go swimming,’ so they run off to try to find it.”

Having a child who has a history of taking off can make it difficult to find safe, secure places to play outside. Even with the most

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intense supervision, playgrounds near water and busy roads can pose safety risks, and the prospect of watching that child along with another sibling is enough to make anyone just stay home.

with latching gate with swings and a small play structure for younger kids. There is a larger play structure in the same park, but it’s not fenced. Parking is on the street. No bathrooms are on site.

Fortunately, the Indianapolis area is home to a handful of play spaces that address this scenario by being either fully fenced or fenced with limited openings.

Westminster Neighborhood Services Children & Youth Education Center

PLAY SPACES THAT ARE FULLY FENCED WITH A GATE Colts Playground at the Children’s Bureau Rachel Glick Courage Center 2115 Central Ave., Indianapolis This is a newer playground on the nearnorth side of downtown designed in partnership with the Colts. The space is about the size of a city lot and features a tall fence and gate, along with innovative play equipment, a basketball court and exercise stations. Parking is on the street.

Be advised that no bathrooms are on site.

445 N. State Ave., Indianapolis In the Holy Cross neighborhood on Indy’s near-east side, this youth center features two fully fenced playgrounds with gates.

One is newer with lots of climbing options, and the other includes an older play structure, swings and more shade. Parking is on the street. No bathrooms on site.

Other fully fenced playground options include outdoor malls. Both Clay Terrace and Hamilton Town Center have small but fully fenced play spaces. Fast food restaurants, like McDonald’s in Mooresville, provide another option.

Shawn Grove Park

PLAY SPACES THAT ARE MOSTLY ENCLOSED

Alabama and 14th Streets, Indianapolis

Herron-Morton Place Historic Park

This cute Old Northside neighborhood park features a fully fenced playground

This spacious neighborhood park is

1927 N. Alabama St., Indianapolis

completely fenced except for the entrance.

It features swings, a medium-sized play structure with big slides and plenty of green space, complete with shade and picnic tables. Parking is on the street. Bathrooms are typically just for events, but ask around to see if anyone has a key.

Holliday Park 6363 Spring Mill Road, Indianapolis The toddler area of this big playground is right in the center and fully fenced except for one opening. There’s a lot to keep kids busy in the space, but if you think your

child would be too distracted by the bigger equipment in nearby non-fenced areas, skip this spot (steep hiking trails down to the White River border the play area). Parking is available in their lot and bathrooms are located in the nearby nature center.

Other mostly enclosed options include two outside the Indy area: Williams Park in Brownsburg (940 S. Locust Lane) and Ellis Park in Danville (600 E. Main St.). Both feature old-school wooden playgrounds surrounded by low fences with minimal openings in the front.

Still looking for a safe place to play? Check out area schools and churches, which often feature playgrounds that are at least partially fenced. While school playgrounds are typically open when classes aren’t in session, before heading to a church playground, call ahead to ask if you can play there.

With a little advance planning to find the playground that best suits your child’s needs, a fun and safe experience can be had for everyone.

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Pr iceless Pi cs TIPS FOR GETTING THE BEST PHOTOS OF KIDS ON THE SPECTRUM

BY MAGG I E LOI SEL L E

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amie Scott clearly remembers one of the first times she considered that her daughter, Harper, might be on the autism spectrum. It was in the middle of a family photo shoot, and the then-2year old just shut down. “It was loud and the lights were too bright. She was what I now know to be over stimulated, and we had to leave,” Scott recalls. “I felt judged and disappointed in how it all played out, and the photographers weren’t even slightly concerned.

Those images are still hard to look at.”

Four years later, Scott now runs her own professional photography business, Jamie Nicole Scott (www.jamienicolescott.com), and is among a growing number of local photographers

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who hope to give families of children with autism or other special needs a positive photo shoot experience.

Unlike a traditional portrait setting that requires children be still and smile for the camera, photographers with experience working with children with special needs often opt to capture candid moments, encouraging play while respecting sensory sensitivities.

“I've had a lot of parents of kids with special needs who will say, ‘My kid won't look at you and smile.’ And I tell them, ‘That’s okay,’” says Brittney Paterson, photographer and owner of Silver Pennies Photography (www. silverpenniesphoto.com), who also has clients with children on the spectrum. “Later in life, you're going to cherish the pictures that capture the genuine spirit of your child.”

Of course, it’s not every day that you have a professional photographer to snap pictures of your children, but you can use some of their go-to techniques to capture the best memories of your day-to-day life:

TIP #1: EMBRACE PLAY For kids on the spectrum, you’re more likely to get a good picture if it feels like playtime rather than a photo shoot, stresses Stacey Fishel, photographer and owner of Pathways Photography (www.pathwaysphoto.com), who often photographs children with autism.

“Blow bubbles, play with balls. Get them to interact, and then snap pictures in between to get the expression you’re looking for,” she suggests. Involving a child’s favorite toy can also help them feel more comfortable in front of the camera, and you’ll be capturing a part of that moment of their childhood.

TIP #4 SNAP PICTURES OFTEN Take the pressure off creating the perfect photo session by getting in the habit of taking pictures often. The frequency will help your child become more comfortable, and it will give you the chance to try new angles, find different environments and learn everything your camera can do.

While getting a great shot of your child may take a little more effort, choosing a professional who is happy to take the time to work with you is well worth it. And for those candid shots at home, with a little advance planning, you’ll be able to snap some priceless photos of your child that let their true essence come through.

“The more you have your camera around, the more you’ll shoot and the more likely you are to capture something magical,” Paterson says.

TIP #2 CONSIDER THE ENVIRONMENT When deciding where to take photos, look for places that are engaging, like your back yard, without being distracting, like a playground. And remember, it’s more important that a child feel comfortable than the surroundings be picture perfect.

“Children on the spectrum will not relax if you decide to suddenly change something in the environment to make for better photos,” says Scott.

TIP #3 LIMIT DISTRACTIONS When snapping pictures, make sure the TV is off and other screens are put away, and if possible, don’t involve too many other people. “Think about items that may help draw your child’s attention toward the camera, but avoid things that may upset them if they aren’t given the object immediately,” says Amanda Goodin, a developmental preschool teacher and mom to a son with special needs, who owns Amanda Goodin Photography (www.amandagoodin.com).

Also, do not expect multiple outfit changes.

Try to keep clothing simple and avoid outfits that are out of the ordinary for the child.

P H OTO: PATH WAYS PHOTOGR A PHY, STACEY FI SHEL

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Teaching Compassion to Kids with Autism HOW CAN THIS IMPORTANT SOCIAL SKILL BE DEVELOPED?

BY C A R R I E B I S H O P

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re kids with autism able to feel empathy and show compassion? It’s a question many wonder, and it makes sense why they do. Social skill deficits are the hallmark of autism, and compassion is a social skill central to forming relationships. Individuals on the autism spectrum present the disorder in their own unique ways, so there is no one answer to this type of question. Yet, the concern is a common one and many of these kids do have difficulty understanding these emotions.

“In my experience, there are some children with autism that easily show compassion, while there are some children with autism who struggle, either with recognizing the emotional state of others or with how to respond to the emotional state of others,” said Mary Rosswurm, executive director of Little Star Center.

Erin Orr, team supervisor with BACA Prep, says it’s possible to develop compassion in kids with autism and believes it’s an important skill for these kids to acquire. She explains that compassion helps kids avoid aversive social situations, find friendship opportunities and make meaningful social interactions more accessible.

So yes, empathy and compassion can be taught. Truly these emotions are taught to kids of all abilities and neuro-makeup.

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The process just has to be more explicit for some. How do you reinforce these particular social skills, which according to Orr are some of the most difficult to teach kids with autism?

In general, Rosswurm says there are a number of fundamental skills to address before focusing on how others feel. Does a child with autism recognize how he feels?

Has he had many positive interactions with another person so that he actively seeks them out? When seeing another person in distress, does he know how he might help alleviate the situation, and does he recognize that this person may feel differently than he currently feels?

Of course she notes one obstacle in learning to identify emotions is that feelings are not always expressed on someone’s face. “People in general do not respond to emotions or situations in the same way. For autistic individuals who often miss nonverbal cues, it’s tough. [Even] neurotypical people often miss nonverbal cues. Add the neurology of autism to it and empathy can be difficult,” Pratt said.

“It is a combination of these skills that may help foster a compassionate reaction from children who either don’t currently show compassion or don’t show compassion in ways we typically expect to see,” said Rosswurm.

Director of Indiana Resource Center for Autism Cathy Pratt agrees with Rosswurm’s approach in that parents should talk about emotions with their child, help identify their own emotions and show how they feel in situations.

Nevertheless, she says parents who have the most success coach their kids all the time in all settings. For instance, while walking down the street they point out someone who appears angry, have the child look at the person, and ask what they think that person might be feeling.

Once a child has learned to identify emotions, Orr says it’s time to work on how to react to different emotional characteristics. For example, when someone is crying knowing that it is okay to ask them what is wrong. She adds that modeling the behaviors you want to see is another important part of teaching these skills.

Orr also urges parents to look at what their child is doing that is either a building block to compassion or compassionate in a different way. “Prerequisite skills to identifying an emotion may be looking at a person, orienting body toward a person, extended eye contact, imitating facial expressions. These are all important behaviors to identify and reinforce as it is unlikely that more complex social skills will emerge without these prerequisites occurring at strength,” she says.

So, in response to our original question – are kids with autism able to feel empathy and show compassion? Fortunately, the short answer is yes.

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Animals and Kids With Autism THE UNIQUE RELATIONSHIP THAT CAN DEVELOP BETWEEN THE TWO

BY MAG G I E LO I S E L L E

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t the age of 10, Canyon Rice made his very first friend. Nonverbal with severe autism, the Indianapolis boy found a patient, playful and loving companion in Tessie, an energetic black and white puppy.

Researchers have repeatedly found that children on the autism spectrum can benefit from interacting with animals, often having lower stress levels and developing better social skills as a result.

A study at Purdue University last year tracked physiological stress in both typically developing children and those with autism as they read silently, read aloud to peers, played with toys and then played with two guinea pigs.

Stress levels were higher in the children with autism in every situation except for when they played with the guinea pigs, suggesting that animals may act as a kind of social buffer for those children.

“What we’re finding is that children with autism show increased social interaction when they have a positive source of interaction, such as an animal,” says Marguerite O’Haire, assistant professor of human-animal interaction at Purdue, who led the study. “That’s important because it’s often a concern that these children can be isolated and bullied by peers.”

In Canyon’s case, his mother, Jenny Rice, originally began bringing dogs home from the shelter where she volunteers, FACE Animal Clinic on Indianapolis’ near east side, to help her son overcome his anxiety of riding in the car. “He definitely had a preference for the bigger dogs. I also felt more comfortable with the stockier dogs since he doesn't always have the most gentle touch,” Jenny

recalls. “These dogs were coming from a kennel environment, so Canyon's loud verbal [self-stimulatory behavior] didn't phase them.”

On the days he visited with the dogs, Canyon’s therapist reported that Canyon showed few or no aggressive behaviors.

The family began raising money to find a rescue dog to train as an emotional support animal for Canyon, and Tessie, a border collie-pit bull mix who had visited from FACE, was the perfect fit.

In August of 2015, she graduated from three weeks of full-time training at Ultimate Canine in Westfield.

“Canyon couldn't be happier. When he wakes up in the morning, he instantly smiles when he sees her,” Jenny says. “They both love water, and Canyon likes to splash her. It may seem insignificant, but he doesn’t engage other people like that.”

Adding a puppy to the family wasn't without its challenges. For Jenny, it meant more work and earlier mornings, but she says she’d do it again without hesitation.

“Even with all the added stress for me, watching the two of them together makes it totally worth it. Canyon still gets upset, but Tessie brings a lot more laughter and happiness to his life.

She makes him happier than anyone ever has.”

For families that aren’t quite ready for the added responsibility of adopting a pet, O’Haire suggests seeking out ways to interact with animals in the community, such as volunteering at a local shelter, going to the zoo or simply visiting a friend with a pet. “It’s not a one-size-fits-all solution,” she says. “Not every child with autism will respond to animals in such a positive way, but for those who do, it can be a powerful phenomenon.”

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Autism and Bullying TEACHING CHILDREN ON THE SPECTRUM TO TAKE A STAND

BY KAREN RING

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ullying continues to plague the American school system and children with an autism spectrum disorder (ASD) are particularly susceptible. A study conducted by the Interactive Autism Network found that a staggering 63 percent of the children on the spectrum they surveyed had been bullied.

“There are many factors that make a child susceptible to bullying, including being perceived as different from their peers or being unable to defend themselves, as well as how well they get along with others.

Unfortunately, many children with ASD fit all these categories, which can make them a more likely target,” explained Tracy L. Harrison, Director of Extended Services for the Behavior Analysis Center for Autism.

Bullying can affect a child’s physical and emotional wellbeing. For children on the spectrum, it can quickly unravel progress made through therapy, which is why it is crucial to stop bullying in its tracks.

School-wide anti-bullying campaigns play a vital role in bullying prevention; however, there are steps parents can take to help their children take a stand against bullying.

IDENTIFY THE PROBLEM Recognizing a problem exists is the first step. Children with an ASD often have difficulty grasping the intentions of others and may not be able to detect the difference between friendly joking and bullying. Cathy Pratt, Director of the Indiana Resource

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Center for Autism, advises parents to explain bullying in very concrete terms.

Social narratives and role-playing exercises can help portray specific scenarios that do and do not constitute bullying.

Because early intervention is so important, parents need to be aware of warning signs that may indicate their child is a victim. “Children with and without verbal communication may begin to avoid certain people or situations if they are being mistreated, so it is important to be aware of any changes in your child’s behavior.

Avoidance behavior can look very different for each child, but may include aggression, elopement or feigning illness,” Harrison stated.

PRACTICE COPING SKILLS Children often become frustrated and confused in the face of bullying and may lash out in retaliation – exactly the response bullies are after. Pratt suggests preparing a child by discussing specific procedures he should follow if he feels threatened. “A child may not be able to remember what he should do in the heat of the moment.

Having it written down, almost like a script, can help.” Pratt also recommends providing opportunities to practice the response scenario so that it comes naturally.

FIND ALLIES No child should be left to handle a bully on his own. “Finding a ‘safe person’ is key,” Pratt said. Identify an adult with whom your child feels safe and can access quickly.

Students who are socially isolated are typically more prone to bullying. It is therefore essential to find other children who are willing to report inappropriate behavior and stand up for your child.

Find out if the school offers a peer buddy program. If this is not an option, talk to your child’s teacher to see if she can recommend children who may be willing to offer assistance. “Any way we can get kids connected to one another helps,” Pratt said.

PROMOTE SELF-ADVOCACY While children with an ASD need a strong network of caregivers and peers to look out for their best interests, they should also be taught to advocate for themselves.

Self-advocacy fosters confidence, selfawareness and the ability to take control of one's environment. One of the best places to address this need is during Individualized Education Program (IEP) meetings.

Including your child in IEP meetings provides him with an opportunity to gain a better understanding of his strengths and needs, and then take part in determining the best way to meet those needs. Giving your child a voice will go a long way in helping him develop an ability to speak up for himself in times of conflict.

Taking a proactive approach towards bullying empowers children to understand when they are being mistreated and take the appropriate steps to get the help they need.

Autism: A Growing National Concern

BY DR . J I M DA LTO N , P SY. D. , HSPP, CSAYC, P R E S I D E N T & C E O DA M A R SERVI CES, I NC.

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ore than 50 years ago, Leo Kranner, MD – a psychiatrist at Johns Hopkins University – wrote the first paper that used the term “autism” to describe children who appeared to be self-absorbed and who displayed significant problems in the areas of social, communication and behavioral functioning. At the time of his first paper, Dr. Kranner thought he was describing a rare form of developmental delay – expected to impact a very small number of children. Today, the prevalence of autism can seem overwhelming.

Clearly a public health concern, we still do not know the true cause of autism. And, we are not likely to discover any one cause of this phenomenon. Much research has focused on the discovery of an “autism gene,” as there is clearly a genetic influence in autism.

Other theories regarding causes of autism, such as maternal infection, compromised immune system, the presence of a virus and brain structure anomalies have received less research support.

There has been no credible indication that vaccinations cause or lead to autism.

The latest reports from the Center for Disease Control (CDC) indicate that approximately one in every 68 school aged children is identified on the autism spectrum. Boys are three to four times more likely to be identified with autism – occurring in approximately one of every 42 male children. Autism is the fastest growing developmental disability in the United States. And, it is anticipated that 2017 reports from the Center for Disease Control (CDC) will once again demonstrate the continual, steep increase in the diagnosis of autism. More recent research is indicating that the true prevalence rate may be as high as one in every 45 children (up from the one in 68 children reported by the CDC in 2014). This means that 2% of children and their families living in the United States are living with autism. The impact of autism, however, does not stop there. Wider perspectives indicate that approximately 30% of the entire population may be affected by autism – in a friend, a loved one, a neighbor, even a co-worker.

Regardless of cause, access to important support services for individuals and families facing challenges related to autism is imperative. Certainly, early diagnosis and intervention may be the single best predictor of outcomes for children with autism.

But, waiting lists are long. Insurance payments are limited.

Comprehensive services are often unavailable.

Now more than ever, efforts must be more focused on the needs and the appropriate supports for the growing number of individuals and families impacted by autism.

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The Financial Strain of Autism ACCESSING ALL THE AVAILABLE RESOURCES

BY MAGGIE LOISELL E

T

he autism spectrum is as varied as the children who grapple with the developmental disorder. But for parents, one thing remains constant – the high cost of quality treatment.

From Applied Behavior Analysis, to speech and occupational therapy and medications to address other symptoms, the cost to families, before insurance, can be upwards of $10,000 a month.

“It’s above and beyond what anyone could afford who didn’t have a six-figure income,” stresses Shana Ritter, director of The Foundation for Autism Resources, or FAR, a Monroe County-based nonprofit organization connecting families with limited means with access to autism treatment.

But Indiana families do have options.

Between one of the strongest autism insurance mandates in the country and a shortening wait list for Medicaid waivers, experts share their recommendations to help ease the financial strain.

INSPECT YOUR INSURANCE Michele Trivedi’s daughter, Ellie, was the first child in Indiana to have her autism treatments covered by insurance, and it took three years for the first claim to be paid.

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That was 2001, and Ellie was a test case for Indiana’s Health Insurance Mandate for Autism Spectrum Disorders and Pervasive Developmental Disorders, one of only two such mandates in the country to classify autism as a chronic condition and require full coverage for treatments deemed medically necessary.

“I wanted to make sure other parents didn’t have to go through what I went through,” says Trivedi, who now advises families as manager of The Arc Insurance Project. “But 14 years later, we’re still having people have significant issues getting coverage.”

For families who are just starting the process, Trivedi recommends they examine their insurance plans. If covered through an employer, parents should contact their Human Resources Department to determine if their plan is covered under the mandate. When inspecting the actual plan, parents should look for a section that’s likely labeled Autism Spectrum Disorders.

directive in 2014 that autism screening, diagnosis and treatment should be covered under the Early and Periodic Screening, Diagnostic and Treatment, or EPSDT, program, but parents need to know to request coverage under that heading, Trivedi notes.

Meanwhile, all of the Affordable Care Act options in Indiana have to follow the state’s mandate.

For parents who run into issues, Trivedi recommends reaching out to her at The Arc Insurance Project (www.arcind.org/ our-programs/the-arc-insurance-project) or to an Ally with the Autism Society of Indiana (www.autismsocietyofindiana.org).

APPLY FOR A MEDICAID WAIVER Another source of financial support is a Medicaid waiver, which provides Medicaid coverage to qualifying children with autism without taking the family’s income into account.

Indiana’s autism mandate applies only to employers’ and individuals’ plans that are regulated by Indiana law, so federal employees and those who work for out-ofstate corporations or for companies that are self-insured may have to do more digging.

The Family Supports Waiver – the waiver that most commonly applies to children with autism – covers a host of services for families, including some that insurance typically doesn’t, such as respite care.

For children enrolled in Medicaid, the federal government issued a

There is currently a wait list for the waiver, about two and a half years, but that’s down from more than ten years a short time ago,

says Nicole Norvell, director of Indiana’s Family and Social Services Administration’s Division of Disability and Rehabilitation Services. She recommends parents apply at their local Bureau of Developmental Disabilities Services office as soon as they have an autism diagnosis. “When your child is first diagnosed, it can be overwhelming.

Talking face-to-face can help parents see all of the services that are available.”

SEEK OUT OTHER OPTIONS Like FAR’s work to give more children access to autism treatment, there are private and nonprofit programs across Indiana and the country that provide financial assistance for families.

The Autism Resource Network of Indiana has a comprehensive list of grants on its website as does the Indiana Resource Center for Autism. The National Autism Association provides funding for families through its Helping Hand program and Autism Speaks has a list of national grant opportunities.

Finding all the available options that may apply to you can be an overwhelming task, but people who have been there themselves are ready to help guide you through the process. Reach out and take advantage of their willingness to share their wealth of information.

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Tantrums Versus Sensory Meltdowns MISINTERPRETING THE CAUSE OF “BAD” BEHAVIOR

BY MAGGIE LOISELL E

Y

ou know the scene – a child screaming, stomping his feet and crying. It’s the behavior we usually call a temper tantrum. For kids with sensory sensitivities however, including many on the autism spectrum, this type of outburst is not just a display of acting out.

Bright lights, loud noises, strong smells and even itchy clothing can cause sensory overload in some children, triggering reactions that look a lot like a tantrum. But children experiencing sensory meltdowns are not looking for attention; they need to get away from the stimuli that are bothering them.

“It’s important to remember that autism spectrum disorders are neurological disorders, so how children on the spectrum interpret the world and how the information comes in to them, is different than it is for us,” stresses Cathy Pratt, Director of the Indiana Resource Center for Autism at the Indiana Institute on Disability and Community at Indiana University. “Behaviors don’t randomly happen. They’re a response to a lack of skills or other issues.”

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WHAT’S BEHIND THE OUTBURST? The field of Applied Behavior Analysis (ABA), a scientifically validated approach to understanding behavior, addresses tantrums and meltdowns by first identifying the function of the behavior. In the case of a tantrum, a child might want something, like a parent’s attention. With a sensory meltdown, a child who can’t express that the room is too noisy for example, may act out to signal he is overwhelmed.

“When you have challenging behavior occurring, you first want to identify why they’re doing it. Are they trying to get something, or are they trying to escape something?” says Liz Lefebre, a board certified behavior analyst and Vice President of Programming and Strategy for Bierman ABA Autism Center in Indianapolis.

“We can analyze the behavior to determine what skills they’re missing.”

STAYING CALM AMID A MELTDOWN That analysis happens later though, after the child has calmed down. Lefebre says that it is futile to try and problem solve with a child in the middle of a tantrum or meltdown.

Instead, parents like Tracy

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Mayer, an Indianapolis mom of a 12-year-old son with autism, do their best to keep their children from hurting themselves or others when they are in this situation. “I try to get my son some place that is not public, and then I talk to him very quietly, and remind him how he doesn’t like it when he gets upset and has ‘fits,’ as he calls them,” Mayer says. “I ask him if he can use his words or write out why he’s upset. Most of the time he can’t, but the act of attempting can sometimes calm him. Sometimes he just has to get it out of his system for a few minutes.”

Mayer says she’s found that reminding her son of the fun things he can do once he calms down, like play on his tablet, can help him regain control. When she sees that the meltdown is waning, she offers lots of encouragement and praise.

Eventually, therapists can work on teaching skills to handle sensory overload, and provide the motivation to use these behaviors. “Let’s teach this kid to say, ‘I don’t want to be in this loud, noisy mall anymore.’

And once they say that, you take them outside,” Lefebre says. “You want to arrange the reinforcer – escape or getting

something they need – so they only get it when they use their new, more appropriate skills.”

For parents having trouble identifying what sensory input is triggering meltdowns for their child, experts recommend having a sensory profile done to evaluate sensory processing patterns.

PREPARING IN ADVANCE Anticipating situations that might cause sensory overload can be essential to preventing meltdowns. Preparing a child for the lights, noises and smells he or she might encounter, what therapists call front loading, can also lessen the chance of a bad reaction. Social narratives and videos can also help in this area.

For Kathy Shreve, a Carmel mom whose 7-year-old son, Andrew, is on the spectrum, that means traveling with noise-canceling headphones, a stroller, chewing gum and a weighted blanket. The family also plans outings around Andrew’s tolerance level. “We build in quiet time breaks and limit our time at busy events.

We only do one busy-type activity per day,” she says. “You just can’t try to squeeze it all in… it’s too much.”

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Adaptive Programs AREA RECREATIONAL PROGRAMS THAT GET EVERYONE IN ON THE ACTION

BY KA REN RIN G

F

rom T-ball leagues to dance classes, parents often turn to recreational sports to provide their children with both a physical and social outlet. For children on the spectrum, sensory issues, communication challenges or difficulties with social skills can make participation in traditional sports programs a challenge.

Fortunately, there are a number of adaptive programs available in our area that cater to a wide range of special needs. Below we outline just a few.

ALLISONVILLE YOUTH BASEBALL AND SOFTBALL LEAGUE CHALLENGERS DIVISION www.aybs.us/Challengers.aspx The Challengers division is open to kids ages 8 to 18 with physical or emotional disabilities that enjoy the game of baseball.

Coaches pitch and everyone bats and runs the bases each inning. Kids are paired with a buddy from the league or older area teams to assist as needed.

BAXTER YMCA www.indymca.org/centers/baxter/formsprogram-guide/ This YMCA branch located on Indianapolis’ south side has a strong adaptive sports program, including swimming lessons, martial arts and dance.

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INDIANA SOCCER’S TOP SOCCER

MONON COMMUNITY CENTER

www.soccerindiana.org/programs/ topsoccer.aspx

www.carmelclayparks.com/mcc

This program is designed to share the love of soccer with players with mental or physical disabilities who are 8 and older.

INDY DANCE ACADEMY www.indydanceacademy.com/all-inclusive/ Indy Dance All-Inclusive program is customized to provide growth and development in the creative arts through therapeutic dance and movement available for ages 9 through adults. The IDA-I curriculum is a developmentally balanced program written by trained therapists who are also on staff as Dance Instructors at IDA. IDA-I’s primary focus is educational support to persons’ with developmental and intellectual disabilities, which promotes social, emotional, cognitive and physical growth within a group setting.

JOSEPH MALEY FOUNDATION www.josephmaley.org This Indianapolis-based nonprofit pairs athletes with trained volunteers to take part in sports ranging from swimming to basketball, running and cheerleading.

From preschool yoga to teen bowling night, Carmel Clay Parks and Recreation’s Monon Community Center offers a wide variety of adaptive sports and activities for every age level.

MORNING DOVE THERAPEUTIC RIDING INC. www.morningdovetrc.org/programsservices/ Morning Dove offers several programs for children and adults with physical, cognitive or emotional disabilities from therapeutic riding, hippotherapy (therapy that works in conjunction with the movements of the horse) to specialized programs for children with Autism Spectrum Disorder.

SPECIAL OLYMPICS INDIANA www.soindiana.org/sports Nearly 11,000 athletes in Indiana across a wide range of ages and abilities take part in more than 20 sports offered year-round through the Special Olympics – the most popular being bowling, track and field and, of course, basketball. Kids can start at the age of 8, and there’s no upper age limit.

Programs are organized by county. Visit their website to find programs in your area.

AAC Apps and Autism HOW THE LATEST TECHNOLOGY IS HELPING KIDS “FIND THEIR VOICE”

I

BY M AGGI E LO I SELLE

n the age of the iPad, tablet technology goes far beyond Facebook and Angry Birds. For many children with autism who struggle to communicate, it’s giving them a “voice” for the first time.

Augmentative and Alternative Communication, or AAC, apps give nonverbal students the ability to select symbols representing words to express themselves via text-to-speech, while giving others a way to communicate with the student in a manner they understand.

The ever-growing number of app options offer a simple-to-understand, portable and relatively inexpensive alternative to traditional low-tech systems, which were often the only option in classrooms even just a few years ago.

“The cheaper and more practical access to AAC systems for our nonverbal kids has been the biggest game changer,” says Darla Ashton, assistive technology coordinator for Carmel Clay Schools. “We have so many kids that are now ‘talking’ with their iPads who never were able to communicate with us before.”

Still, it’s been a leap of faith for the early adopters of AAC apps to switch from the tangible picture and binder systems to an iPad. Heather Nichols, a significant disabilities instructional coach with Carmel Clay Schools who’s worked in early childhood education for ten years, admits she was skeptical the first time she started a student with an app. “I thought it would be difficult to use, but it wasn’t long before I realized

this was wonderful!” she recalls. “We really had no idea that these children had the ability, at the age of three, to work with such a dynamic device.”

speak on their own, research shows just the opposite. Once a student understands how communication works, their verbal spoken output often increases.

For parents who are considering AAC apps or who are new to the technology, Nichols offers some key tips:

For Cindy Seiler, whose 5-year-old son, Denver, has autism and is nonverbal, the iPad has been transformational both in and out of Nichols’ classroom. “It’s been a godsend. He can ‘say’ things like, ‘Want cracker,’ or ‘Want milk,’ or tell me what’s hurting,” she says. “When there are those moments of frustration and he can’t communicate, the second he gets the iPad in his hands, he’ll stop crying, and he’ll tell me what he wants or what he needs.”

Seiler also likes that Denver’s iPad doesn’t make him stand out at school, where tablet technology is now common in the classroom.

Ask around. Find out what technology your school offers. Consult your child’s speech therapist. Connect with other parents. Do your own research. It’s trial and error, so don’t be afraid to try something new. If it doesn’t click this time, try again later. Don’t give up.

Accept communication in all forms.

Some kids use multiple strategies to communicate – sign language, gestures, pictures and an iPad. Any communication is good communication. If you’re working with an iPad and they want to sign for a drink, accept that behavior because you don’t want to discourage any type of communication.

Respect the child’s voice. If the iPad is going to be their voice, you have to treat it as such.

You can’t take away a child’s voice, even if they’ve asked to go to the park a hundred times in the last hour!

Experts suggest that parents of children who use AAC apps learn how to navigate the technology themselves so they can help troubleshoot any problems at home.

Parents should contact their school district to inquire about training. Local organizations like Easter Seals Crossroads also offer opportunities for training, so look into the community support available to help your child take advantage of the innovative technology available right at his or her fingertips.

As for parents’ concerns that AAC systems could hinder a child’s ability to one day

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