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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.

“An inability to express one’s self in accordance with society’s standards does not make you less, it just makes you different.”

Written by a Little Star Center employee

I grew up with my older brother.  Mom, dad, me and my brother.  We were as close as two brothers could be growing up.  My mom stayed home with us until we went to school.  Everything was very typical, I didn’t know any different.  We would play blocks, trucks, roughhousing and make believe.  It wasn’t until my brother left for kindergarten.  I remember walking with mom to the bus stop and watching my brother get on the bus for school.

I was sad at first. This was the first time I would be away from my brother ever, at all.  I learned later in life that when my brother went to school, a different side of him was shown.  My brother, who played with me like a typical kid, didn’t play with anyone in kindergarten.  In fact, my brother didn’t do much of anything.  He sat in a corner, away from all of his peers.  My brother displayed his first signs of Asperger Syndrome, extreme social anxiety in a new setting.

I didn’t know when he got home that he had such a rough time at school.  He was my brother like I always knew him, back in the safety and security of our home.  My parents were made aware of his difficulties, and he repeated kindergarten.  My brother, being the brilliant human being that he is, surely saw that he didn’t meet their social expectations year one, so made sure of it come year two.  My brother progressed into elementary school as if nothing was wrong.  He did well academically and even made a handful of friends, some of which he still has to this day.

It wasn’t until late elementary school that a teacher noticed some of my brother’s difficulties and suggested that he be tested for high-functioning autism.  In the mid 90’s my brother was diagnosed with Asperger Syndrome.  This was difficult for me to hear, as you could imagine, being a 10 year-old boy and hearing your brother has a**burgers?  I was quickly told the correct spelling and was told that it was a high functioning form of autism.

We went to a parent meeting one evening at our elementary school so my parents could receive some literature on my brother’s newly discovered syndrome.  My brother and I played in the gym with some of the others kids and siblings.  We quickly noticed how out of place we were.  My brother was not like these children, we could both see that.  After that night, little was said about my brother’s Asperger’s or about the fact that he had autism.  But my curiosity had been peaked.  My brother was always just a little quirky and odd to me.  It never was anything deficient about him.  In fact, I always admired his ability to block out social distractions and focus on his studies and academic pursuits.

I was curious and, as it turned out, I would spend the rest of my time in school taking every psychology class I could get my hands on. I studied psychology in college as well as counseling and philosophy.  I wanted to help others and change the world.

After college, life sent me to residential care for children with autism.  I finally felt as though I had answered my calling.  I was working with a population I had been around my whole life.  Little did I realize that my brother was very similar to the kids in that gymnasium all those years ago.  Just a little quirky and different when it came to communicating with others.  But just as brilliant and loving as my brother.  I love my brother and this lesson that he taught me so early in life:  An inability to express one’s self in accordance with society’s standards does not make you less, it just makes you different.  It has been my pleasure working with children with autism and helping the world see their brilliance and love, even if it’s not what they’re expecting to see.  And I have my brother to thank for that.

This post was written by an employee at Little Star Center who has requested to remain anonymous.

The awesomeness of riding a tricycle…or not!

 

By Siovhan Lawrence

In our family, April 2 is not just World Autism Awareness Day. It’s also the two-year anniversary of our son Bradley’s autism diagnosis. So far, we’ve learned many things on this journey. One lesson, in particular, we learned very early is setting realistic goals for Bradley while celebrating every single milestone – both big and small.

After a battery of tests with four-and five-letter acronyms and countless labs, we finally received an autism diagnosis for Bradley. The next step: Setting goals for our newly diagnosed son.  We were asked, “What are your specific goals for Bradley in the next six months?” How do you answer that?  We knew our son was delayed in every aspect and missed milestones. He was developing new interfering behaviors and was also showing regression. We answered with things we thought would be achievable. Roll a ball back and forth during play. Push a toy car around. Say the words “hi”, “bye”, “mommy”, “daddy” and “sissy.” We said we wanted him to wave, smile, respond to his name when called. Also added to our list were eye contact and an expanded food repertoire. WOW! Looking back now, we realize what a tall order that was.

In the following months we learned more about autism and the challenges Bradley would face.  Needless to say, during his next evaluation Bradley had not met any of our goals. Subsequently, we became less specific about our goals and focused more on understanding all of the intricate parts of each of those tasks.

After coming to Little Star Center (nearly 18 months after Bradley’s diagnosis), Brian, one of Bradley’s therapists, casually mentioned he was working on something with our son. He told us it would be a surprise.  At Christmastime, we were asked to come to LSC and receive our “gift.”  With all of the progress, setbacks, therapy and undeniable hard work, we had no idea what to expect. We walked into LSC and in came Bradley, riding around the corner on a tricycle. ALL BY HIMSELF! There he was pedaling, smiling and focusing. He lost a grip on the pedal, but he regained his footing. It was AMAZING! The best Christmas present ever!

As we celebrate Bradley’s progress over the last two years, we have learned to see the development of new skills and goals being met under a whole new light. Each and every moment of dedication from both the LSC staff and Bradley is monumental. Whether he is flashing one of his giant, infectious smiles or communicating one of his needs, we appreciate each moment and it fills our hearts with hope and pride.

Siovhan Lawrence is a mother of two. Her son, Bradley is a learner at Little Star Center.

 

 

 

 

We found our perfect match at Little Star

By Onya Jones

When Kaleigh was 3 years old, we searched for the perfect ABA facility to address her needs. At the time, she wasn’t ready for developmental preschool. She needed more one-on-one assistance.

I began searching for therapy for children with Autism Spectrum Disorder and came upon Little Star Center’s website. It was very informative and looked exactly like what Kaleigh needed.  After touring the center and meeting with staff, I knew this was where she needed to be.

Four years later, I remain convinced that Little Star is the best place for Kaleigh. The staff is devoted to Kaleigh’s progress. It’s evident that they want the kids to succeed in life. They work hard to make that happen. It’s clear they love every single one of those kids and, at the same time, provide great support to the parents.

We are truly grateful we found Little Star.

Onya Jones is mom to Kaleigh, a learner at Little Star Center. 

 

 

 

 

 

Updates about the Affordable Care Act (ACA)

By Michele Trivedi, MHA

Citizens who need health coverage to start on Jan. 1 have more time to apply. The federal government has extended the deadline to Dec. 23.

The Affordable Care Act (ACA) provides navigators to assist those who have questions or need help signing up for a plan. To find a local navigator, call 1-800-318-2596 or go to www.healthcare.gov.  Help can also be found at Covering Kids and Families of Indiana.

For more information about how ACA covers autism and developmental disabilities, visit the following websites: The Arc of IndianaAutism Society of Indiana,  and Autism Speaks.

Michele Trivedi is The Arc Insurance Project Manager and a member of the Board of Directors at Little Star Center. She is available to answer your questions regarding ACA coverage for individuals with autism. She can be reached at 317-977-2375.

Great speakers, informative sessions at ASHA convention

By Kasey Philpott, MS, CCC-SLP

I recently attended the annual American Speech-Language-Hearing Association’s (ASHA) convention in Chicago.  With over 12,000 attendees, the ASHA convention provides a plethora of learning opportunities for speech language pathologists and audiologists alike covering a variety of topics, including speech sound disorders, autism, augmentative and alternative communication (AAC), hearing loss, swallowing disorders, stroke and language science.

This year’s theme was The Magic of Teamwork: Science and Service Delivery, which offered several opportunities to hear from other professions including behavior analysts!

I had the pleasure of attending many sessions discussing autism treatment specific to AAC, social skills, feeding/swallowing and others. I also had the opportunity to see a few familiar faces, including Oliver Wendt, Ph.D, from Purdue University, who presented a case study on Experimental Evaluation of a Parent-Implemented AAC Intervention Protocol for Children with Severe Autism. Thomas Zane Ph.D., a Little Star Center advisory board member. He presented a poster session that looked at the evaluation of efficiency and preference for communication modalities.

Overall it was a great experience!  I’m looking forward to next year’s convention in Orlando, Fla.!

Kasey is a speech language pathologist & director of related services at Little Star Center.

 

Young student is a fan of Little Star Center

William, the 10 year-old son of Tim Courtney, research and training director at Little Star Center, wrote the following letter to his school to request a grant for Little Star Center. This is a great reminder that our learners  success is important to even our youngest citizens.

Did you know one out of every 88 kids has autism? It’s for that reason I think we should choose Little Star Center for one of our lollipop drop charities.

Little Star Center is right here in our community helping kids with autism. Little Star is 100 percent non-profit. With the money we raise for (the school), it would be able to purchase therapy supplies for the kids who go there. The supplies would help the kids in learning to communicate and be independent.

I think it’s important to help everyone as much as we can, and it’s a great feeling to be able to help kids in our very own community. My dad is one of the directors at Little Star Center. I know the work they do is changing kid’s lives, and I hope we can assist them in continuing to do that.

Meg DiMartino named Assistant Clinical Director

Carmel, Ind.—Nov. 26, 2013—Little Star Center, a non-profit therapeutic applied behavior analysis center serving children and young adults with autism, announces today it has promoted Meg DiMartino to assistant clinical director.

DiMartino has worked with the Little Star Center team since April 2013 as a program manager. With her promotion to assistant clinic director, she assumes responsibilities including oversight and supervision of Little Star Center learners and their therapists, respectively. She is a board certified behavior analyst (BCBA) and earned her Master of Science degree in applied behavior analysis and developmental disabilities from Auburn University in Auburn, Alabama under the supervision of Dr. James Carr and Dr. Linda LeBlanc. After graduate school, she worked as a school consultant for central and northern Alabama through The Learning Tree Inc. in Tallassee, Ala.

Proud to be Hoosier representing autism and our ABA facility

By Mary Rosswurm

The National Autism Speaks conference was held in Washington D.C. last week. I was humbled to be invited to this national event that brought together about 200 autism advocates from classrooms, boardrooms, small towns, big cities and in-between. This three-day event marked the launch of the 2014 policy agenda (a first-ever for autism advocates and legislation).

Tim Courtney and I met face to face with key Indiana legislators to discuss research funding and encourage their participation in committees. I truly appreciate the time every legislator and professional took in their day to listen, make notes and subsequently take action on the behalf of families and children affected by autism. It was an amazing experience. The experience demonstrated democracy at work.

To read more about the event read this blog written by Liz Fields, president of Autism Speaks.