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”?

Uncertainty…no one likes it. For most people, ambiguity is the demise of the self-assured. If we aren’t sure of the messages in our environment, our response will many times mirror the uneasy feelings we have inside. Working with children, and young adults with autism has thrown me into a sea of ambiguity on a daily basis. What might seem clear to me is often clouded or obscure for children with autism. Everyone has a need to know what’s going on in their environment and we get our information from various sources. Reading gestures and social cues, decoding environmental cues and responding to verbal commands all draw upon our ability to decipher and understand what is being communicated. Our job as parents and educators is to teach those skills to our children with autism so that their view of the world becomes stable, their anxiety decreases, and their independence to maintain meaningful relationships increases.

How many times have you heard someone say, “I know he understands, he’s just being stubborn”, or “he is so rude, he should know better”? Compounding the lack of social skills is the display of ignorance on the part of those interacting with a child with autism. For many people, a social skills deficit just doesn’t make sense. It’s a deficit that isn’t always obvious and occurs inconsistently in different environments.

Jacob, a 10 year old with autism, is bright, engaging, and enthusiastic. His grades and test scores had always reflected a highly intelligent child. However, as Jacob gets older his grades have started to slip and his enthusiasm for school has declined. His parents report that Jacob expresses frustration with school frequently but is unable to describe what frustrates him. I encouraged his parents to visit with Jacob’s teachers to see if they might have some helpful feedback. Almost all of the teachers that work with Jacob provided similar feedback. They described a student that was becoming increasingly lazy, forgetful (not handing in assignments), and selfish. They knew he could do better work, and were looking to the parents to solve their current dilemma. This is often where parents find themselves when working with teachers who have limited knowledge of autism. The subtle deficits that affect their ability to successfully participate in school can be misinterpreted and often results in a punitive or dismissive response. The answer to this is simple: awareness and education.

The first step in providing resources to a child with autism is educating those working with the child. Providing information increases awareness among educators and results in appropriate supports and interventions for a child with autism. For Jacob, his parents needed to provide information to his teacher on how autism affected him and subsequently his ability to successfully participate in school. Jacob actually wasn’t lazy he was bored. He thought that if he showed his teacher that he was able to do the work that was enough. Sometimes that meant he only did one math problem on a sheet that had 15 problems to complete. He didn’t see the sense in doing repetitive work and was actually motivated when allowed to move forward at his pace. Finding the balance for Jacob would be the trick. Jacob wasn’t forgetful either. He didn’t hand in his assignment because it was never something that was made clear to him. Jacob had trouble with organization and that affected many areas of his day, but with a visual schedule and a “to do” list, Jacob had the visual reminder he needed to get his assignments in on time. Jacob was also not selfish, but in a world that seemed unstable and unpredictable for him, his personal possessions were stabilizing and decreased his anxiety. He wasn’t willing to share his “security” items. Once his anxiety decreased his willingness to share increased. He was especially fond of the children who took an interest in his narrow areas of interest. The challenge was expanding that area which in turn would increase interactions with more children.

The “unspoken” words that confuse are often times the very things that we take for granted. Think of how many times we look at someone’s face to “read” a reaction, or look around to see what everyone else is doing before we decide what we should be doing. When was the last time you interpreted someone’s tone of voice to mean that they were upset with you? The choices we make on a daily basis are often based on information we get from the “unspoken” words in our environment. This is the very skill that is difficult for children with autism to master, and confuses them on a daily basis.

Like Jacob’s parents, other parents find it frustrating when they are faced with attitudes and misunderstandings over something as simple as social skills. These skills may be simple for us, but not for children with autism. Children aren’t graded on social skills like they are in math or reading and yet, they are often judged when their interactions are not appropriate. The challenge becomes that of shifting perspectives, providing support and increasing awareness regarding autism and the characteristics that impact many on a daily basis.

Increasing awareness really comes down to respect for those who are challenged with navigating a very social world without a handbook filled with the meaning of all those “unspoken” words. Shifting perspectives comes down to a decision by those working with all children to put aside pre-conceived ideas about autism to really understand how autism uniquely impacts each child. Providing support then becomes a team effort and transports parents off of the “island of despair” because now everyone understands and everyone works towards a common goal.

Forming a Bond Like No Other

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.

While there isn’t one golden answer to this dilemma, there is a solution for some that is often overlooked, or too difficult to accomplish…a parent support group. I’ve had many parents contact me asking about whether there is a support group for families of children with autism spectrum disorders in the Wichita area and surrounding communities. I’ve directed them when I’ve had information, but the truth is there hasn’t been a stable, consistent group for parents and families in the area for quite some time.

Parent groups are most effective when run by parents and allow families to share their experiences, as well as their expertise! Many times the greatest experts we have regarding our children are other parents. The primary difficulty seems to be that there isn’t always a consistent place to meet that can always accommodate everyone. I’ll take care of this part if you take care of the rest. The Heartspring CARE Program would like to invite parents to come together for a parent support group for parents, which is run by parents. Please contact me if you are interested in participating in this group. Here are some of the benefits;

• Location will always be the same (Heartspring Conference Center) until determined otherwise.
• It will be run by parents (parents are often the best “experts!”)
• I will facilitate connections to resources and programs
• It’s FREE!
• Once the larger group is formed, smaller groups can also meet specific to the needs of their child so that parents are connected with other parents who have similar experiences to share. These smaller groups can be specific to age, diagnosis, needs, or even geographic area. (living within the same area promotes opportunities for social activities with children!)

If you or a family you know is interested in participating in a parent support group for families of children with autism spectrum disorders, please contact;

Connie Erbert
cerbert@heartspring.org
8700 East 29^th Street North
Wichita, KS 67226
316-634-8862

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.

As the media and others address the increase and refer to it often times as an epidemic, I prefer to look at the increase in prevalence of autism spectrum disorders as yet another “wake up” call to all of us. Some of us are part of a community of researchers who are dedicating their careers to uncovering the cause or causes of autism. Others, like me, focus on programs and services for those who have autism as well as the impact autism has on the families whose lives are impacted by the diagnosis. All of us play a role in providing much needed service and support to an increasing number of individuals and families who daily live with the challenges and triumphs of autism.

While the statistics are staggering and autism continues to be the fastest growing developmental disability in the United States, our response needs to be thoughtful, measured and proactive. Rather than exasperation…renewed enthusiasm! Enthusiasm to recognize that each and every one of us, whether we know it or not, plays a role in changing attitudes and perceptions surrounding autism. Each and every day, chances are we interact with someone with an autism spectrum disorder. The more we educate ourselves about autism, the more we increase the chances that we ourselves become agents of change in a society that is still trying to understand autism spectrum disorders.

While the new statistics will be used in the upcoming weeks to generate further funding for research, I hope that the statistics will motivate people to educate themselves. Remember to be aware of those with autism spectrum disorders and appreciate their strengths. Become an advocate towards appropriate services and funding as well as increased coverage through insurance companies. I think it can be a challenge to sift through details that can often times be sensationalized in the media. It almost draws us away from the individual or family…the real “human” aspect of autism. With that in mind, I would like to address a few points to ponder in the coming weeks as stories continue to circulate in response to the rise in autism spectrum disorders.

Remember the person first. Each and every person with autism is first and foremost a person! Too often we hear stories about autism that magnify the symptoms of autism rather than the strengths of the individual. Whether our frame of reference is “Rainman”, or Temple Grandin, those are but two individuals with an autism spectrum disorder.

I firmly believe in the saying, “once you’ve met someone with autism, you’ve met one person with autism.” Each individual has a unique personality, hopes, fears, dreams, interests, strengths and challenges, just as we all do. It would be a shame if all of us were known by a single, solitary label, and yet a person with autism is sometimes described or summarized only by the word autism. Get to know the person, not the label.

Remember the family. Become “future focused” by viewing the individual, and the family as part of our community. Actively educating ourselves about autism spectrum disorders and participating in events to raise awareness and provide supports increases opportunities for all of us to come together as a community. Developing an understanding of autism gives families that extra measure of support when we share public places with them such as grocery stores, churches and restaurants.

Rather than making assumptions, trying to understand individuals with autism opens up opportunities for us to stand alongside parents, teachers, and professionals as a community passionate about addressing the challenges of working with and living with persons with autism spectrum disorders. Whether a child is high functioning, low functioning, is verbal or non-verbal, stims or not, all children deserve the services they need to maximize their potential. They deserve parents who are supportive and engaged with their child and their community, and a community that rejoices in the successes of everyone! The future is always brighter when we share the load!

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.

It does take a village, and that village or team mentality is crucial to serve all children productively. Whether you are part of a winning team or a losing team depends on the dynamics you choose.

Positive T.E.A.M. Dynamics

Together, parents, teachers and the entire school community works as a team toward creating a productive foundation that recognizes that shared information and exchange of ideas is what makes it all work. Communication is the keystone of teamwork. Parents must communicate with teachers and teachers must communicate with the parents. As part of the child’s team everyone must share the load, rather than compartmentalize responsibilities. When a team works together, everyone knows what everyone else is doing so that each member can contribute toward a successful common goal. Coming together for the child’s IEP as part of a productive team creates outcomes that keep the child and their needs front and center.

Empower others on the team to be the best they can be! When I’m working with parents and teachers alike, I tell them to think of the 3 R’s first: Rapport, Reinforce and Replace. Building a rapport with the child is a critical first step as we begin to build a foundation that is solid. Equally important is building rapport with each other so that the team is comfortable sharing important information regarding the child specific to any scenario. I think we are all familiar with reinforcement and how good it feels to be praised and noticed for our accomplishments. For a child with autism, it is sometimes difficult to find what might be reinforcing; however it is one of the big keys to unlocking progress that can be repeated and sustained. While it can take some time to identify reinforcement items or activities, it is crucial for successful program implementation. Keep in mind that reinforcement among team members is also a powerful motivator especially for those who daily work with the challenges and triumphs of a child with an autism spectrum disorder. Replacing certain inappropriate behaviors means that the team must understand the function of that behavior so that an appropriate replacement behavior can be found that delivers the same function… but appropriately. Remember, a replacement behavior takes into consideration the needs of the child, not the preference of the adults working with the child.

Articulate your needs to the appropriate team member in a proactive and productive manner. Being proactive gives the team time to consider possible options as well as review data that can best address the dilemma. Regardless of whether the dilemma is child centered or team centered, addressing it once it is noticed will allow for interventions and problem solving solutions to occur before the dilemma happens again. Talking on a regular basis and accurately articulating needs among team members keeps everyone on the same page, and also cultivates a brainstorming atmosphere where everyone is heard, and the needs of the child are met in a timely and creative way. Communication, communication, communication…it is amazing what can be accomplished when we all communicate!

Mediate. To mediate means to intervene, to reconcile and to intercede. There are a number of times when mediation is the answer in the midst of chaos and conflict. The difference between being assertive and being aggressive is usually an element of anger. Anger always has a cost and that is usually measured by a loss in trust, loss of communication and ultimately, the loss of a child’s learning time. Mediation means that there is a mutual respect that translates into collaboration and selfless sharing of ideas and opinions regarding what will work best to meet the needs of the child. We’ve all found ourselves in untenable situations at one time or another and hold on dearly to our opinion or stance. As we waste energy holding on to what we believe is the truth, we forget that it is only our truth. If we stand alone with our truth the outcome becomes stagnate and static…it doesn’t move. If, however, we mediate and compromise, our ideas become part of a wealth of information that comes together with the team. As a team, we move forward. As a team, we stand together and not alone. As a team we are all heard and respected, but more importantly, as selfless participants we shift our focus from the need or desire to be right towards the child needing support.

As the school year begins, our challenge is to remember that each and every one of us is part of the TEAM! If we begin at the same starting point and work together as a team, the finish line becomes a reality, and winning is defined by the progress and success each of us witness by the children we serve.

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.

The first week saw the Apprentice group on campus. This group had an age range of 13-18 and their primary focus was to produce a newscast complete with interviews, sports, weather, and on the spot reporting. While working on group projects such as a mosaic to be hung in the Heartspring Conference Center, all of the campers had a part in working on the newscast, yearbook, or website so that there would be a permanent reminder as to what they did this week, and what the following two weeks would entail for the rest of the campers. The newscast included some very interesting and fun interviews with McConnell Air Force Base staff that had some of our campers actually sitting in the cockpit of a KC-135 refueling airplane and experiencing the same feelings as some of our pilots who serve our country. Later in the week, Lt. Ken Landwehr, head of homicide with the Wichita Police department visited Camp SSTAR for an interview with one of our campers. Lt. Landwehr stayed long enough to meet all of the campers and answer a number of well thought out questions. The end of week one found all of us a little sad knowing that we would be waiting another year to see the tremendous growth these young men and women would make as they ventured back to school. On Friday of the first week we had field day which gave the campers time to have some fun outside with the counselors, water balloons, a water rocket, and towels as we all got soaked and enjoyed just hanging out with the campers after a long week of hard work! The first week was really like dipping our toe into bath water to check the temperature before we actually took a bath.

The Reporters group was with us for the second week of camp, along with some junior counselors from week one. This week was really our time to shine the skills that we know as counselors. This group was made up of 3-5 year olds, and had more energy and enthusiasm than you can imagine. It was quite amazing to see the growth in this group even over a period of one week. While there was a bit of trepidation on the part of some of the campers, by midweek, all of the Reporters were having fun, learning so much about themselves and others, and making new friends. On Friday, the campers were able to earn a ticket for the movie Madagascar as well as participate in field day outside. Even with thunderstorms looming, all of the campers sat outside the front of the building to watch as our large water rocket was launched over 150 feet in the air. While they were amazed to see the rocket, I was really touched to see that many of the campers were sitting right beside each other with arms around each other’s necks as friends. While the first week was like dipping our big toe into the bathtub to check the temperature, this week found us going “all in” as the campers brought out the best in us, and the best in each other! This group was definitely small but mighty!

The last week of camp SSTAR brought the Producers to campus. This group’s ages ranged from 8-13, and for the first time included enough girls to form their own group! What an amazing group of campers! They started off a bit slow because for many, this was their first experience at camp, but it didn’t take them long to bond with some of the other campers and become a group of friends. This week was more of a combination of week one and week two as these campers participated in some of the fun activities such as crafts, fishing, and group games, but also worked on the website, as well as stories for the yearbook. With so many personalities and so many new campers, the challenges of such a week could have been overwhelming for many, but each and every camper stepped up to the challenge and out of their comfort zone to make friends and have fun!

At the beginning of each week of camp, I asked all of the campers if they knew what the goal of the week was for them. Each week started with campers telling me the same thing…”to have fun!” I can guarantee that each camper had fun, and more importantly to me, they made friends and learned new skills.

For me and the counselors, the challenge is to facilitate the acquisition of appropriate social skills while engaging in typical camp activities. That meant that many of us worked with campers on conflict resolution, turn taking, self-advocacy, self-awareness, and self-regulation skills. While each day started with social skills chats, it was the responsibility of each counselor to encourage appropriate interactions between campers so that these skills could be learned, remembered, and replicated as each camper goes back to school. As I look back over the last three weeks, I am proud of a camp that has given children an opportunity to participate in something that they might not have had the opportunity to ever do if not for Camp SSTAR. I am proud of a staff that comes together and works as a team flawlessly with the primary focus being the campers… a staff that goes with the flow, and learns as we go so that when things change because we need to shift an accommodation or support, they are right there picking up as if there wasn’t a hiccup! That means that when we serve these campers, we are doing so with integrity, passion and the motivation to insure that each camper has a once in a lifetime experience!

In August we will invite all the campers and their parents back to Heartspring for a Camp SSTAR BBQ where we will watch the newscast, hand out yearbooks and celebrate what our campers have done!

Summer camp….for some children it means staying away from home, and swimming, hiking, fishing, and making friends. For Camp SSTAR campers, it means that and a whole lot more. Camp SSTAR delivers those camp experiences as well as keys for communication, relationships, friendships and most of all happiness. These keys are made up of social skills that assist each camper as they go back to their families and to their schools. Keys that will give them the opportunities each of us have to be a part of a world that is very social, very loud and very busy. Camp SSTAR 2009 was an experience for campers and counselors alike. For counselors, it was an example of why we come to work each day…to be a part of something that matters in the lives of every child we serve each and every day!