Saturday, April 6th 2013, over 2000 people came together to celebrate, connect, laugh, share, and support each other in efforts to increase autism awareness in our community. The energy in the air was “electric”, a word used more than once with me when others described the day…full of energy, excitement, and electricity! While we felt the same electricity, there was much trepidation connected to the day itself. Rewinding through the previous week, we’d been busy handing out the 1 in 88 tee shirts, and nailing down any last minute details. It is only a little over a week since the day of the walk, and it is still difficult to capture all that the CARE Walk meant to so many families. Participating in the walk meant so much to so many families that were both present at the walk as well as those who were not. For many of those who did not make it to the walk, you walked for them. Their absence was not because they lack the same passion, rather, it was because autism played a significant role in their ability to join us. I had many parents and individuals call and email, telling of their inability to come because of the large crowd, the noises, the trepidation of the “unknown”, and of their fear that their child would have a complete meltdown. We all know how a setting such as the CARE Walk can conjure up some unexpected occurrences, and for some families and individuals, their participation occurred behind the scenes. Their support and enthusiasm was no less than those the families that were there that day, and our gratitude to them is no less!

In our 6th year, the Autism CARE Walk exploded with double the participants, a dramatic increase in community partners, and wonderful friends that helped us along the way. We were a huge presence in the heart of Wichita, and our efforts to increase autism awareness did not go unnoticed! It is because of events such as the CARE Walk that the CARE program continues to thrive as a community outreach program for hundreds of families. Programs such as Camp SSTAR, SSTAR Scouts, Nature Scouts, the Greenhouse Project, The Arts Project, and one on one family consultation services survive. As families struggle to afford services that insurance companies refuse to cover, you stepped up in response by participating, fundraising, and challenging all of us to be better stewards of our children, neighbors, classmates, and friends who daily live with the triumphs and challenges of autism.

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by Connie Erbert

In a week where Wichita and surrounding areas saw record snowfall, school days cancelled, children sledding, and parents fretting, there is one “constant” for many families. Autism comes with a varied mix of characteristics that are unique from one individual to another. For most individuals with autism, one characteristic is fairly common….the need for things to be consistent. Surprises and unexpected events can be difficult to navigate, and are often met with meltdowns, heightened anxiety, and, as one of my clients put it, “devastation”. 

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by Connie Erbert, Director of CARE and Autism Outreach

I think the majority of us look towards the holidays with mixed feelings. Mixed because along with the bright lights, fun gatherings, and festive music comes all the preparations, shifting of schedules, and the worry of whether everything will go smoothly. As adults, we try to replicate fond memories of our childhood so that we might touch on those feelings of long ago. So it’s safe to say that many of us wrap a great deal of emotion, time, and stress around the holidays. Add autism, and everything is often magnified. In fact, it isn’t always the most wonderful time of the year!

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By Connie Erbert

It is with regularity that I am conversing with an individual with autism. From as young as six upwards well past the age of 45, the individuals I support have taught me enormous lessons about life and the world we live in. My challenge has been to deliver appropriate interventions, feedback, support, advice, and strategies to each individual that is purposeful, valuable, understood, and validating. Purposeful, in that so many of the individuals I see challenge me at every turn. The need for social skills or organizational skills just doesn’t make sense….but get some of them talking about astronomy, or weather patterns in Kansas, or Star Wars, and they are truly in their comfort zone, they are “at home” with their favorite topics and interests, and the need for social skills pales in comparison. What is the purpose? If there is no perceived purpose, then there obviously isn’t any value, and if there isn’t any value then, unfortunately, the motivation to understand goes down dramatically. Finally, that leaves a less than validating experience because many of them never experience the positive feedback connected to solid social skills or organized thoughts, actions, and experiences. 

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By Connie Erbert

Three years ago, I was approached by a local business owner asking me to provide training to his staff regarding autism. Jerry’s goal was for his staff to become more informed because his adult son, Jonathan, would be working in the family business. It was important to Jerry that his employees understand autism, so that Jonathan would work in a place that embraced his talents, understood his challenges, and encouraged him throughout his day—nothing different than what we all desire for ourselves. Three years later, it is clear that Jerry’s first steps in providing resources to his staff, as well as to Jonathan, have culminated into some incredible outcomes. Jonathan is now preparing to move into his own apartment with hopes of acquiring a job in the community that he finds fits his interest level, and provides him with the income needed to be self-sufficient.

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By Connie Erbert

Last evening we had one of our SSTAR Scout meetings. The subject of discussion was what the word advocacy meant to them. After coming to a common understanding of advocacy, we then pursued a conversation about how they might best advocate for themselves, and the benefits of doing so. What impressed me the most was the manner in which they simplistically articulated the need for others to have a real understanding of autism. With mutual understanding, their hope was to increase their ability to participate and succeed in society. One of the scouts expressed it very well when he said, “If others understand about Asperger syndrome it makes it easier for me to feel comfortable… to feel like I belong.”   

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by Connie Erbert

How many New Year’s resolutions have you made for 2012?  The great thing about New Year’s resolutions is that it energizes us with hope that something good, healthy, fun, exciting, emotional, spiritual, socially or personally will happen if we just simply make it happen with a little work, effort, shift in attitude, and, of course, hope! 

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I was born into an army family and that meant we moved quite frequently throughout my childhood.  When I was born we were living in Mt. Clemons, Michigan, a suburb of Detroit.  At age three my family moved to Pueblo, Colorado.  It was in Pueblo that I have my first recollection of various TV programs that were popular from, I Love Lucy to Leave it to Beaver to my favorite, Mayberry RFD.   

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by Connie Erbert

In the past few months, I’ve noticed an increasing amount of parents openly expressing their frustrations, worries, and complete exhaustion as they daily support, love, and advocate for their child or young adult diagnosed with an autism spectrum disorder. The common thread amongst these parents was their passionate advocacy for their children. However, they are all at or near their breaking point. A primary focus of my job is working with the parents. If we are to sustain support for the individual with autism, we must support the parents first. It is what I refer to as the “airplane theory”. If an airplane is going down, put the oxygen mask on yourself first, and then save the child. If parents are supported and sustained throughout this process, they are better able to support their child consistently. So I say to parents, “be gentle with yourselves” so that you can be the effective, consistent support your child needs without sacrificing your needs in the process. 

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by Connie Erbert

Creating an experience that is fun, educational, unique, and meaningful, all in the same package can be quite a challenge! The “engine” driving Camp SSTAR is a “social skills fuel” that is “oiled” with respect, rapport and reinforcement. Camp SSTAR 2011 ran like a well-oiled machine despite changes to the format and schedule. While we viewed the changes as positive additions to camp, there was some trepidation as to how the campers would react to some of the changes. However, our worries were unfounded as campers and counselors alike enjoyed two incredible weeks together!

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by Connie Erbert

Hero: a person of distinguished courage or ability, admired for their brave deeds and noble qualities. This past month, I was honored by the Lindt Chocolatier Company in partnership with Autism Speaks as an Unsung Hero of Autism. I am beyond humbled by such a title, and am deeply grateful to the parents, and colleagues who thought I was deserving of such an award. Throughout this whole process, I've found myself reflecting on an uneasy feeling that has accompanied me throughout. I think it is difficult for anyone to be put in a position of esteem, because awards and recognition such as this, don't always give a complete picture of the whole story.

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by Connie Erbert

Recently I’ve received numerous phone calls from grandparents seeking information about autism. All of them were anticipating upcoming visits from grandchildren who would be visiting over spring break. It was heartening to receive these calls because each one of these grandparents was taking steps to prepare for their grandchildren so that the visits would be mutually enjoyable. It is this kind of preparation that grandparents, as well as other very special grownups in a child’s life, can engage in to increase opportunities for the individual with an autism spectrum disorder. A large portion of my job is increasing awareness about autism spectrum disorders.

My primary goal is two-fold: awareness and education. Increasing awareness means that we become better advocates for the individual with autism. This way we can prepare and facilitate better interactions, cultivate stronger relationships, open doors in our community for jobs as well as recreation leisure activities, and ultimately offer a wider variety of opportunities for the individual to have sustained success and a more fulfilling life.

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by Connie Erbert

Type “autism” into Google and you will find over 16,000,000 references. For a parent looking for resources and information this can be a daunting journey through various forums, sites, and files. Compounding this journey is a parent’s need to understand the difference between credible information and information that is actually misleading.

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by Connie Erbert

At a recent meeting of one of our social groups, a young adult named Brock engaged me in a conversation about autism. Knowing Brock since he was 10, it was clear to me that his self-image regarding his autism has developed and grown over the years. He is identifying and processing his own opinions about his autism as a young adult. In his words, “I will always have autism. I will be an old person still with autism. I don’t want it to be cured, this is who I am.”

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by Connie Erbert

SSTAR Scouts is now officially an established program through the Heartspring CARE Program and is a delightful success! Each meeting is geared toward offering the scouts opportunities to work on specific social skills while participating in fun, creative, and challenging activities. Introducing the Arts program at SSTAR Scouts has allowed us to provide another opportunity for each individual to share their creative skills or learn to tap into a creative side they might not have known existed. These opportunities are made all the more rewarding when friendships are developed, or an older individual learns the power of mentoring a peer or younger scout. I could be describing any scout troop, but considering all of these individuals are diagnosed with an autism spectrum disorder, it is what appears to be the smallest of accomplishments that are in truth monumental for our scouts.

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by Connie Erbert

The following story is written by a mother of triplet boys. I share it because it could be a story written by any one of the hundreds of families in the Wichita area. What makes this family, as well as the hundreds of other families, so extraordinary is that they are living daily with the triumphs and challenges of autism. The DiGiovanni's operate under a blanket of mutual love, understanding, fortitude, and respect. I'm sure mom and dad would describe it a bit differently, interjecting those days where they are at their wits end, exhausted and exasperated! I thank Gretchen for sharing such an honest perspective because it highlights one of the most significant challenges of raising a child with autism...the awareness and understanding of others.

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by Connie Erbert

My own impression and feelings regarding stress and anxiety have evolved over the years. I remember the stress felt before a big test in high school or the anxiety before our yearly musical. Sitting in English class for me meant that I would be challenged to pay attention to a teacher with a very flat voice with little enthusiasm for her job. This is difficult for someone with ADHD. I found that if I doodled during class, it helped me to listen much more intently. Doodling became my “tool” for attending and actively listening to the teacher. At the time, I couldn’t imagine having those same feelings once I’d become an adult. The innocent ignorance of youth led me to believe that once I’d completed school, once I was independent and on my own, once I was in charge of my own life things would settle down, and the everyday stressors would diminish… I was wrong.

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by Connie Erbert

One of my favorite short stories brings together a concept that is often difficult for parents, professionals, and individuals to grasp. 

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by Connie Erbert

“In Chinese, the word crisis is composed of two characters. One represents danger and the other represents opportunity.” - John F. Kennedy

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by Connie Erbert

Tragically, children and adults with autism are often attracted to water sources such as pools, ponds, and lakes. Drowning is a leading cause of death for a child or adult who has autism. Be sure your child knows how to swim unassisted. Wichita-area YMCAs encourage parents of children with special needs to sign up for lessons.

Individuals with autism often have difficulty processing their environment including the ability to identify dangerous situations. The same social and environmental rules used for the general public must be applied for individuals with autism, however modifications must be made to ensure they are safe. Individualizing these modifications and supports is the key. Visual supports identifying dangerous areas along with proactive strategies such as swim lessons, modeling and practicing appropriate behavior around dangerous areas such as a pool or pond can make all the difference. Checking routinely for comprehension and appropriate processing of dangerous situations helps to reinforce the supports and tools each individual needs to be safe in situations that can quickly turn into an emergency.

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by Connie Erbert

When I do presentations or workshops, I often times don’t print a schedule or agenda, and may not have handouts available. As I begin speaking, I see that some are having difficulty paying attention. Many scan the room as if looking for the answer to some unanswered question. I continue talking without skipping a beat. I watch some become very uncomfortable, while others flash a nervous smile, not quite sure of what is to come. Their environment is not controlled, and the ambiguity elicits a sense of uncertainty. It isn’t surprising that such a simple action on my part is met with a visible reaction. Who likes being in a position of not knowing what’s going on? If social cues aren’t clear, or if we don’t know how to read the social cues, that uncomfortable almost frustrated feeling continues to rise. Finally one or two people will raise their hands to ask the question on almost everyone’s mind, “is there an agenda”?

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by Connie Erbert

For as long as I can remember, there have always been two “new years” in our house to prepare for….the start of a new school year, and the start of a new calendar year. For children, the start of the school year means the end of summer break, and the start of the calendar year means the end of their holiday break. For parents, it means the same thing, but elicits a very different feeling. Many times it is those “breaks” that parents find difficult because the natural routine and flow of the family schedule is shuffled. For many families it turns into a time where parents seek opportunities for their children to engage in fun, educational, and social activities as well as family time with vacations and travel. Parents of children with autism find this to be even more challenging as these “breaks” disrupt the routine and structure that is so important for their children. Feelings of isolation and even despair can sometimes overwhelm parents as participation in these activities can be complicated and challenging for their children with autism.

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by Connie Erbert

With the recent reports regarding the new statistics indicating that one in every 91 American children are now being diagnosed with autism spectrum disorders, I’ve fielded many telephone calls and emails from parents, professionals and friends asking what I think this means. I think now would be a good time to focus again more specifically on the person diagnosed with autism and what it means to those of us who work to promote appropriate interventions and services to families and communities around the world.

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by Connie Erbert

We’ve all heard the phrase that it takes a village to raise a child. What happens when the village is burning? What happens if someone says, “I’m not the fireman - it’s not my problem?” The truth is the village is burning. Each year teachers are faced with increasing demands personally and professionally, with a growing population of children with autism spectrum disorders and diminishing resources. A classroom is a community where each student becomes a reflection of their parents’ physical, emotional and financial disequilibrium. Children absorb their parents’ stress and in turn bring that to the classroom. Teachers must then address the child with consideration to disability, but also take a close look at the whole child to ensure success. A teacher must take into account that everything that affects her students’ ability to learn is her problem. Understanding this, teachers and parents must stand together as a team and “join the bucket brigade” so that the village stands strong and supports the child.

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by Connie Erbert

Fifty-eight enthusiastic campers joined us for Camp SSTAR this summer with the goal of making friends and learning new skills for the school year accomplished! Enjoying many camping activities such as fishing, hiking, and crafts as well as working on an official newscast and yearbook, the campers were involved, energized and excited to be a part of such a unique camp with the primary reward of lasting friendships.

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by Connie Erbert

April is National Autism Awareness Month in the United States, and April 2 is World Autism Day, celebrated by countries around the globe. Organizations large and small focus efforts to increase public awareness of the condition and the needs of individuals diagnosed with autism spectrum disorders. Heartspring is celebrating Autism Awareness Month by sponsoring the 2nd Annual walk for autism awareness with the Autism CARE Walk on Saturday, April 4, 2009. Building upon the tremendous success of the inaugural walk in 2008, this year’s walk brings more activities and resources, fantastic raffle prizes and vendors specifically chosen to deliver valuable autism resources for families and individuals. Most importantly, the Autism CARE Walk raises awareness about autism spectrum disorders in our community and across the nation.

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by Connie Erbert

The phone rang, it was four o’clock in the morning, and on the other end of the line was the mother of a child I had been working with for over 4 years. Through her sobs, she told me that their beautiful little boy had just passed away. Brian, who had autism, had suffered a seizure earlier in the evening in his sleep, and never woke up. To say his parents were devastated just doesn’t quite do justice to the deep pain and loss they felt. Although that was 15 years ago, I think about Brian often because it was on that day that I learned a valuable lesson about the true “ability” of each and every one of us.

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by Connie Erbert

“Children with autism don’t have a father around to tell them, don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, you idiot.”’ On July 21st, 2008, Radio talk show host Michael Savage described 99 percent of children with autism as brats. While Savage’s comments reflect an outdated, cruel and misguided point of view, it prompted advocates to step up their efforts to educate the public and move forward rather than fall further behind. Grasping the evolution of autism requires a step back over 100 years of history.

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by Connie Erbert

The opportunity to communicate and collaborate with people from around the world regarding best practices when working with children with autism spectrum disorders is phenomenal! I had such an opportunity on Monday, November 5th 2007 in the wee hours of the morning to accommodate for the 12 1/2 hour time change. Using SKYPE, Chris and Gary were able to connect with me so that I could present to the teachers and staff of the Open Door School, The National Centre for Autism in India, also known as Action for Autism or AFA as it is referred to by those who work there.

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