Silhouette of a child sitting on an adult's shoulders with arms outstretched

The gift of communicating with my son

By Brett Eastwick

I have been asked many times if it is harder being a parent to a child who has autism. It is not an easy question to answer. Having the perspective of raising children who are more typically developing and functioning, you would think it would be easy to determine how difficult or easy it is. It just isn’t.

There are areas that, of course, are easier. Communication stands out as a major area that is easier as a parent (until they become teenagers, that is. After that, good luck). Being able to communicate directly and effectively makes life easier for your child and you. Simple things like hearing “I’m hungry,” “I’m thirsty,” or “I’m happy” allow those around a child to take care of his needs and wants. Now, imagine not having that ability. Imagine that part of your brain being shut off, or only able to speak French around people who do not, or, perhaps even worse, being mute. And your hands won’t move. That is what it can be like for a person with autism.

Teaching a child how to communicate is, to say the least, a challenge. I have learners find echoics, whether just words or phrases, difficult to repeat or even aversive. Prolonged eye contact may also be a challenge for them. So much time and effort may result in being just as frustrating for both parties. I have asked myself, “Why can’t I teach my son to speak?” He can make sounds, imitate them, show you a person or item if you ask him to do so. Why can’t he speak?? The answer is easy. He has autism. He is unable to communicate the same way I do, the same way his mother and siblings do. The solution then, is clear. We have to learn how to communicate in a way in which HE is able to learn.

My son, Wyatt, uses ASL(American Sign Language)to make and maintain contact with the verbal world. It is what allows those around him to access his world. ASL is as real a language as English, Spanish or any spoken language. This is what he was able to learn to communicate with us. Why wouldn’t we use it to communicate with him? Some people ask me if I wish Wyatt could speak, if I wish he could just say, “I love you, Dad.” He does that every day. His hands are graceful and fluent. His communication is direct. Wyatt means what he says. Sign language allows his means of communication to be all that much more effective.

Brett is a therapist at Little Star Center.

LSC therapists unite to raise money for our centers

 

Pizza anyone? How about taking the family out to dinner to support a great cause? Our Little Star Center therapists have been busy this month hosting a variety of events in the Indianapolis and Lafayette areas to raise money for our non-profit organization.  Several businesses, including Ruth’s Chris Steak House, Sky Zone and Hot Box Pizza, have hosted special events to raise funds for Little Star!

There’s still time to show your support for Little Star. Here’s the remaining list of fundraising events:

  • Carmel – All Little Star directors have volunteered to take a pie to the face – to benefit Little Star! Raffle tickets are available for $1 at Little Star-Carmel. Our directors will take the pies to the face at our Independence Day Celebration on July 3.
  • Lafayette – Buffalo Wild Wings, 2715 S. Creasy Lane, Friday, June 27. Present your Little Star Coupon and 15 percent of your ticket will go to LSC.
  • Lafayette – Knickerbocker, 113 N 5th St., Saturday, June 28, is hosting a benefit concert, starting at 9 a.m. This event features two bands, a silent auction and raffle. All proceeds go to Little Star.
  • Sentsy online fundraiser ends Saturday, June 28. To participate, click here
  • Westfield – Big Hoffa’s BBQ, 800 E. Main St., Monday, June 30, dine and donate to Little Star.

Technology & the autism community – Little Star Center, Indiana ABA therapy

 

By Tim Courtney, MS, BCBA

We live in a very exciting time, where technology is rapidly changing the world around us. For individuals with autism and language/communication deficits, technology has had a sudden and dramatic effect. Individuals with autism that are non-vocal account for about 25% of this population, based upon recent research.  Technology has assisted this population with communicating, either via exchange of pictures, text to voice output, and speech generating devices.

Speech generating devices have changed dramatically from devices larger than most current laptops to devices like the iPad, iPad mini, or iPods that can achieve the exact same thing, and more, all while looking very typical. Look around most areas and all of us are using our devices to navigate and access our real and virtual social communities. Individuals with autism are not being left out.

The beauty of the recent tablet devices is the ease at which we can expand their functionality. Most everything we could ever want a device to do is available in an app. As of October 2013, the iOS app market now includes 1,000,000 apps. Fortunately, there is help with finding the right app to help individuals with autism. AutismSpeaks offers very helpful information for navigating the app store. The webpage even allows for searching the Android play store.

I can’t wait to see what the future brings. We are currently getting a glimpse into some of the possibilities. The Enable Talk glove which enables ASL signers to speak through a Bluetooth enabled phone, or the Hapifork that collects data and encourages either slower or faster eating through tactile feedback. Virtual reality through headsets like the Oculus Rift could provide for interesting ways to teach social skills, community skills, and even desensitization from situations that have evoked fear.

Tim Courtney is research and training director at Little Star Center, Indiana’s first ABA facility.

How my cousin directed my career path to Little Star Center

From a Little Star Center employee

There are 17 grandchildren on my dad’s side of the family. Sixteen of us live without autism, but there is one who does. My 9-year-old cousin, Q, lives on the spectrum.  All of my cousins have affected my life in various ways, but the only one who has dramatically changed the course of my life is Q.

He was 5 years old when I accepted the official title of his “personal babysitter”. I needed a summer job between my freshman and sophomore years at Indiana University, and my aunt needed an extra set of eyes to watch him. It seemed like a win-win for all parties involved, which it undoubtedly was. From day one, Q had an eye for adventure, and a penchant for the mischievous. Since he was non-verbal at the time, there were a lot of communication barriers to work past. However, I quickly learned that McDonald’s French fries were his favorite foods, and swinging at the park was his favorite activity.

Over those few summer months, my bond with Q blossomed. Although we spent hours running around the house playing, there were also many moments of extreme frustration and sadness.  Nevertheless, it’s the joyous times that I remember the most vividly. By babysitting my little cousin, I learned the value of patience and compassion.

Working with my cousin helped me discover my passion for supporting those with disabilities.  I feel fortunate to have the opportunity to work with kids with autism at Little Star Center, and I’m forever grateful to my cousin Q for leading me to this point.​

 

Living in the moment with Gentry – Inspiration from the founder of Little Star Center

By Amy Groshell

April rolls around like a lion each year for us.  The low pressure systems bring explosive weather changes that are only predicted by our daughter’s agitation and explosive behavior.  Most people aren’t aware (even in the autism community) that three times more children, teens and adults with autism celebrate their birthdays in the spring.  My two girls (both with significant development delays), are no exception.

When I write about my experience with autism, I am referring to Gentry, my bright, bold and beautiful daughter who will turn 18 this month.  Yes, children with autism (even those like her with multitudes of early intervention) turn into adults.  Recently, my husband and I spent our morning at the courthouse gaining legal guardianship of her.  Basically, she will be considered a minor the rest of her life. The beauty of this is that Gentry’s autism is so severe that she won’t even have a clue that we ever did this.  She is so “in the moment” that she is driven only by who she’s with, what she is doing, and what she wants to do next. There is a sweetness to this, although, I must admit, that spending time with her (we call it “Gentry time”) is like being Pac Man gobbling up the minutes of the day.  My husband affectionately calls it the autism marathon. There is a beauty in being with Gentry.  She forces you to be in the moment.  You must drop everything on your list – mundane chores included – and be present with her.

When you choose to engage your attention with a person with autism, often doing what they care about, you are helping their autism quiet down. Their bodies are constantly being bombarded with sensory input signals that often they have no control over.  Many of the unusual behaviors of autism are merely an attempt to block these signals out. In essence, the behavior is a coping mechanism to help the person with autism survive.  By engaging in a positive activity – like swimming or throwing a ball – you are giving the person with autism a break from their hyperactive sensory system.  The person with autism is also giving you the gift of living in the moment.  After all, aren’t you sick of your list?

This month is autism awareness month.  Instead of giving pity to the person with autism, engage with them in a meaningful activity.  Just observe them or ask their caregiver for ideas.  Connecting with a person with autism is a true gift.  It gives them a break from their overactive sensory system and gives them a sense of belonging.  I can’t think of a better way to celebrate autism awareness!

Amy Groshell, and her first husband, Steele Gudal, founded LSC in 2002. Steele Gudal died in 2006. Amy and her family now reside in Florida.

Good-bye Alabama, hello Indiana ABA center

 

By Jamie Vandiver

Shortly after my son Camden’s diagnosis, I began checking into different therapies.  Living in a small, rural Alabama town, I quickly found my options and resources were limited, and almost non-existent.  I knew that in order for my son to receive the therapy he desperately needed, my family would have to move out of state.

After discovering Indiana has the necessary mandated insurance laws, I inquired about ABA centers in the state.  I chose Indiana since I have family members living within the state.  Luckily, this is how I learned about Little Star Center. I quickly scheduled a tour. I knew as soon as I completed the tour, it was the place for Camden. So, without hesitation, we packed up and moved 500 miles to Lafayette!

Little Star turned out to be a true blessing!  From the very first day, Little Star went above and beyond to make us feel welcomed. Every morning, as soon as Camden entered the building, he was greeted by his therapist(s) with a big warm “hello”.  Every morning made Camden feel right at home.  It touched my heart to see his eyes light up every morning.  The enthusiasm the staff carries cannot be matched!  I knew they truly cared about my son, and his progress.  They were always delighted to work with my son.  And, the atmosphere was always warm, inviting, and fun.

I liked the fact they included me, as a parent, in meetings.  They worked with me to develop a personal goals plan for Camden.  They also taught me many skills to use at home. I now have the skills needed to help Camden during his most difficult times.  The ABA therapy he received has improved his behavior tremendously.  He acquired many skills needed for everyday living.

Camden truly made great strides during his time at Little Star.  He has since transitioned successfully to a Pre-K program back in Alabama.  We often think about Little Star, and keep in contact with many of his friends and therapists. I can honestly say that Little Star was there for us each step of the way.  Above all, we were blessed to find an ABA center that truly understood the dynamics of our struggles.  They helped turn Camden’s struggles into achievements.  I will always give credit to Little

Star, along with the great people that make up their staff, for giving us hope, and for laying the foundation for Camden to have a better and brighter future!

Thank you Little Star!

Conversation with a Big Star for Indiana’s first ABA center

 

In recognition of Autism Awareness Month, we will feature comments from our Little Star Center Board of Directors. This week’s Q&A is with Dr.Rose Wolflin, who has served on Little Star Center’s Board of Directors since 2007. Wolflin is a senior corporate certified paralegal for J.D. Byrider.

 What makes you most proud about serving on Little Star Center’s Board of Directors? 

The Board of Directors is comprised of interesting, insightful individuals that tremendously care about the services and needs of Little Star.  I am proud to be associated with this open-minded group and most proud of Little Star’s positive impact on the community and our ability to help the children develop and blossom.

During your time as board member, what do you think has been one of Little Star Center’s biggest success stories? 

One of Little Star Center’s biggest success stories has been the improved efficiency and array of services provided in Little Star’s Carmel center and with the expansion to Lafayette and Bloomington.  Little Star’s staffing has been a critical component to this success.  I appreciate and admire the Little Star employees’ dedication and qualifications.

What is one thing you want people to know about individuals with autism?  

One thing I want people to know is that individuals with autism are brilliant and can shine in various settings.

What do you see for the future of autism services in Indiana? Which  areas of service are in need of growth? 

 The future is bright with an increased awareness and understanding.  Educators need to continue to diligently conduct and review case studies and share their findings with policymakers.

How has being a part of LSC impacted you personally? 

 I have an increased appreciation for caregivers and a better understanding of the challenges involved with autism.  I am more aware of societal needs and opportunities.

 

Why I chose Applied Behavior Analysis Indiana

 

By Angela Vargas, M.S., BCBA

Like most other kids, I went through my list of what I wanted to be when I grew up: a lawyer (…too boring), a law and order SVU detective (…too scary), a wedding planner (…I probably wouldn’t be much good at that). This all changed when I learned that my younger cousin was diagnosed with autism. Initially, it didn’t affect me much. He lived in Colombia and my family had already moved to the United States by then. It was only a label. Then, my cousin’s family came to Wisconsin for a visit. Although he was only about 3 years old, I noticed slight differences in the way he interacted with others. “This must be the autism,” I thought.

As I got older, I heard my parents talking about the different hardships my cousin and his family faced in Colombia; limited resources and knowledge about autism being the two most prominent ones. My aunt and uncle tried to find a logical reason behind the diagnosis. Was it the Coke they gave him to drink when he was a baby? Whose side of the family did it come from? How was his birth different than that of his brother’s? All of these questions, left unanswered, only increased the familial tension. Finally, my aunt decided she would get her certificate in ABA at the University of North Texas so that she could be better informed about autism and hopefully guide my cousin’s treatment. Additionally, my cousin would make several trips to Florida to receive the needed therapy.

As it may come to no surprise, I ultimately decided that I wanted to pursue a career in the field of autism. After doing some research and talking to those in the field, I was given two recommendations: become a behavior analyst or a special education teacher. “Behavior analyst it is!” I thought, and I haven’t looked back since. Choosing to become a BCBA, while on a whim, was the best decision I have ever made. I have a profession, which I not only love, but one that constantly challenges me. Very few individuals can say that they are excited to get up and go to work every day; I am fortunate to be one of those who can. Each learner teaches me something different about life and resilience. Every milestone met, no matter how big or small, is groundbreaking. We all have a reason for pursuing a career in this field. Many of us have likely been affected by autism personally. Each and every time I work with a new learner, my cousin comes to mind. He may not have received the needed services. His family may not have been provided with the necessary support and information. He may not have had access to a service provider like LSC, something unheard of in Colombia. Luckily, I have the opportunity to be sure that his story is one never told by any of the families I work with. For this, I am eternally grateful.

Angela Vargas is a program manager at Little Star Center.

Celebrating our amazing Ryan

By Lisa Striewe 

As a mother of a teenage boy with autism, I am often in awe of just how far we’ve come.  Ryan was diagnosed with PDD, NOS when he was 3 ½ years old. He had very little language and extreme anxiety about the world around him.  The prognosis, according to the doctors, was not good.  I went home with guilt, fear and worry of what his life would be like and how I, his mother and advocate, could help him.

Eleven short years later, we’re in the kitchen.  Ryan is making dinner.  Tonight is his night to do so.  We take turns and he’ll make dinner while I do the dishes.  Other nights our roles are reversed.  But this particular evening, while he’s making dinner, he expresses some anxiety about going into high school next year.  As I listen to him, I gather that while some anxiety is coming from the prospect of high school, the majority of it is stemming from what that means.  In his mind, he needs to prepare and be ready to be out on his own, only a few short steps after starting high school.  My mind goes back to my son, at 3 years old.  Who would have known that we’d come so far and that now the anxiety is about if he has what it takes to go to college, get a job and live on his own or …yes, it’s coming….if he will find a girlfriend, get married and have a family?

As we continue our discussion, we broke the concerns into categories and agreed that while he needed to have faith in his abilities, there were some skills that we could work on to make him feel more confident about where he’s going and skills that would get him prepared for the life that he wants.  We created short-term and long-term goals.  Short-term goals included better study skills since he knows that high school and college will require more studying and project work, money and budgeting since he wants to make sure that he has enough money to do all of the things he wants to do. He wants me to help him find a part-time job this summer because, according to him, “it will help me become more dependable to those around me”.

His long-term goals include learning to drive and developing more tolerance for social interactions in preparation for dating when he is appropriately aged to do so.

As we finished our meal, I realized that the future is waiting for Ryan.  We don’t know what it will bring, but we do know that if we listen to each other and work together, he will be closer to reaching his goals.  And I, his mother and lifetime advocate and cheerleader, will be right there celebrating every step, every goal reached and every new goal set.  After watching my son for the last 14 years, I know that he is capable of achieving everything he desires.  It may take a little longer, may take a few extra steps or a few false starts, but he will do it, because that’s who he is.

Lisa Striewe is human resource and accounting coordinator at Little Star Center.

Conversation with a Big Star for Little Star

 

In recognition of Autism Awareness Month, we will feature comments from our Little Star Center Board of Directors. This week’s Q&A is with Michele Trivedi, who has served on Little Star Center’s Board of Directors since 2006. Trivedi serves on the Health Benefits Mandate Task Force For Indiana and is active in the autism community.  

What makes you most proud about serving on Little Star Center’s Board of Directors?

What makes me most proud of serving on the Little Star Board of Directors is that, even when it has been difficult, the Board has always made decisions that put the interests of the children and the quality of the therapy we provide to the children first. Even when that meant financial sacrifices, asking a Board member or a staff person to resign, or declining to expand into an area that was already served by multiple providers, we have always done what is in the long term best interests of the autism community in Indiana, the children we serve and their families.  I love that about our Board!

During your time as board member, what do you think has been one of Little Star Center’s biggest success stories?

I think our biggest success is the dozens of little victories and successes our staff sees every day – they add up!

What is one thing you want people to know about individuals with autism?

People with autism want to be accepted for who they are, and want to have their talents and contributions valued.  They do not want to be categorized and constantly paid attention to for what they CANNOT do.  People with autism are successful at many things, and if we, the “typical” people would learn to look beyond what we THINK is wrong with other people, we would find many talented, amazing people to fill jobs – places in higher education, places in our community, where we need people to think differently.  We get too stuck on labeling and limiting others instead of finding possibility and promise.

What do you see for the future of autism services in Indiana? Which  areas of service are in need of growth?

Indiana needs services that focus on peoples’ abilities and not just their “dis”abilities in order to facilitate better education, treatment, and job opportunities for people with autism and other disabilities.  Families in Indiana need an objective way to assess ABA providers, their training and experience and quality.  Health and human services need to break down the walls and silos and work with the communities they serve to provide more effective and more efficient services.

How has being a part of LSC impacted you personally?

First, the treatment my child receives from LSC has changed her life and our life as a family for the better.  The functional skills she has gained, and our ability to manage challenges has been key to improving our quality of life.  We can envision our child having a job, doing things other people take as “given”.  When she was first diagnosed, all we were told were the “nevers”, and she has already gained many more skills than we ever thought she would.  And we have truly met an extended family at Little Star.  We have no family in the state, and this means a lot to us.  It has been so encouraging and rewarding to be on the Board with a group of people who care so much about Little Star and all of the families and staff at Little Star.