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Autism articles & organizations are big stars in Indiana

When a Hoosier family receives an autism diagnosis for their child, their support system expands instantly. A large network of support, information and advocacy is available to empower families to create the best next steps in their child’s development. We are grateful to the many organizations that make it their mission to improve the lives of every individual with autism. Through their efforts, thousands of Hoosiers are living their best lives.

Here are a few of the Big Stars in our autism community who not only offer support to Little Star Center, but to families, schools and businesses throughout Indiana. They are a family’s first resource after receiving an autism diagnosis:

ARC of Indiana assists all individuals with disabilities, connecting them with appropriate services, programs and employment to help them lead richer lives.

Autism Society of Indiana  (ASI) is often the first contact for families who learn about their child’s autism diagnosis. ASI helps parents navigate through the many questions, paperwork and health care issues that arise with an autism diagnosis. They also work to educate the community, business leaders and educators about autism.

Autism Speaks is the world’s leading autism science and advocacy organization, funding research into causes, prevention, treatments and a cure for autism. Autism Speaks also provides funds and support locally to strengthen the lives of Hoosiers with autism.

About Special Kids (ASK) is a “Parent to Parent” organization that works throughout Indiana to answer questions and provide support, information and resources. ASK helps families and professionals understand the various systems that are encountered related to special needs.

Indiana Resource Center for Autism (IRCA) strengthens communities by providing training, consultation and research to support individuals with autism and their families. IRCA is a great resource for families seeking to understand the various treatments for autism, local programs and research.

Answers for Autism (AAI) provides grants to Indiana programs that serve individuals with autism. The volunteer organization sponsors events throughout the year to raise money to fund these grants. The organization’s goal is to increase and broaden public knowledge and awareness about the behaviors, social issues and emotional needs of individuals on the autism spectrum so that all individuals can participate in and contribute to the community without fear or bias or loss of individuality.

 

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.

Celebrating our beautiful son, Anthony

By Joanne Kehoe

I have four children. Anthony, my oldest, has autism.

When Anthony was a baby, I used to think about milestones and when he would reach them.  He sat up really early. He started rolling over and crawling early and got right up and started walking and running right on time.  His teeth came in when they were supposed to, much to my chagrin as a nursing mother.  He ate food from a spoon at six months.

I don’t know when I thought it strange that he wasn’t talking. I mean, he DID talk — a little.  He could count pretty high with me signing the numbers. He could say colors that I would sign. I have a video of him saying, “E, I, E, I … ho,” while playing with a tractor that played the Old McDonald song.

At 18 months, I took him to the pediatrician for his well-child checkup and explained that he wasn’t talking and that other kids in playgroups who were his age were flying by him. The doctor said to me, “Look how smart he is. Keep reading to him and keep talking to him.” So, I did.  I read a LOT. I talked to him a LOT.  I remember walking with Anthony around the block by our house after it snowed, and I thought to myself that if I fell and bonked my head, I would be in trouble because Anthony isn’t going to call for help.  He never called, “Mommy!” from his room. That was one thing I thought was strange.

Finally, we started Anthony in First Steps, the early intervention program. Three therapists came one morning to evaluate him. That was the first time I looked at Anthony as a stranger might see him and it didn’t look good!  They said he should have developmental, occupational and speech therapy.  They were throwing the book at him.  At the end of his involvement with First Steps, and before he moved on to therapy at the public school, he was diagnosed with autism.  By then, we knew it was coming, but it still sort of stung when the psychiatrist asked, “Has anyone ever mentioned autism to you?”

That was almost six years ago, and we have undergone a lot of attitude adjustments since then.  Anthony has had to get used to three little sisters, one louder than the next!  We have had to adjust our attitudes and our expectations. We still celebrate milestones with Anthony – so many I couldn’t even begin to count. They are just different than the milestones that I thought we’d be celebrating, and, Lord knows, they are sometimes later than I thought they’d be reached!  But he is so smart, and so wonderful, and we all love him so much – and I don’t mean just his family, but all his therapists and everyone who comes in contact with him. And those milestones mean just as much and probably more than the milestones that I thought he’d reach all those years ago when I was narrating my life and waiting for that first word.

Joanne Kehoe is a mom of four, including Anthony, a learner at Little Star.

 

Conversation with a Big Star for Little Star

 

In recognition of Autism Awareness Month, we will feature comments from the Little Star Center Board of Directors. This week’s Q&A is with board member Bill Brunner. Brunner was appointed to the Little Star Center Board of Directors in 2009. He is the former Chief Financial Officer for J.D. Byrider. In 2013, he was named a CFO of the Year by the Indianapolis Business Journal.

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

The work we do to serve our children with no distractions from our mission of serving the most children we can with uncompromised quality treatment.

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

The biggest success story occurs frequently when we share the success of the children.  This can take the form of a child learning a skill that he/she previously could not perform up to transitioning to traditional education programs.

From a more grown up perspective, I take pride in management and the board’s reaction to a challenge that presented itself which likely could have impacted the quality of Little Star’s programs; the mission prevailed.  Like in many organizations revenue and profit can become a cancer on the organization’s mission.  Yes, the board does have the responsibility to assure the organization’s survival, but parents can be assured that the quality of service to their children will not be compromised.

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

Having autism is not a shortcoming or a bad defect; it is a neurological condition. As individuals they have many beautiful traits that often are expressed in a level of love that those of us that are “normal” cannot understand or express.

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

I wish I could be optimistic on this topic, but I see the environment surrounding the ability to serve children will continue to be challenging for the foreseeable future.  The challenges will come from the ability to pay for services as well as groups trying to profit from this population.

The outlook from a clinical perspective, however, is bright.  I am encouraged by the increasing amount of research in treatment methods and tools for aiding in treatment.  In particular, tools like electronic tablets (i-pads) offer the chance to improve communication for individuals with autism.

How has being a part of LSC impacted you personally?

This is simple; having the opportunity to serve the autistic community reminds me that serving our fellow persons and particularly our children is imperative to fulfilling our social responsibilities.

 

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.