Upcoming Conferences

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Our assistant director, Kevin Trimble, will be representing Camp Akeela at these two upcoming conferences:

On October 25, in Boston, is AANE’s Asperger Syndrome Connections 2014. This year’s conference, titled “Practical Perspectives, Positive Lives” features speakers Simon Baron-Cohen, Winnie Dunn and Michael Forbes Wilcox.

On November 2, Kevin will be attending the ASPEN Fall Conference in Iselin, New Jersey. After morning presentations from Alex Plank (speaking on autism and the media) and Dennis Debbaudt (ASD and independence), seven afternoon sessions will address topics from dating and relationships to psychopharmacology.

If you’re planning to attend either of these conferences, make sure to stop by the Camp Akeela table to say hello to Kevin. If you weren’t planning to attend, we encourage you to take a look a these two excellent organizations: AANE and ASPEN.

Empathy

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A mom from Akeela Family Camp recently posted a research study about individuals with Asperger’s Syndrome and empathy. (The 2009 study by Henry and Kamila Markram of the Swiss Federal Institute of Technology in Lausanne is referenced here, here and elsewhere). While the research is a few years old, we believe it is extremely relevant.

We have always said that the notion that our campers (and those like them) lack empathy is absolutely bogus. We have seen time and time again that our campers are extremely caring individuals who are capable of understanding the emotions of others and showing them compassion. There are times at camp when we believe that a typically developing child would not be as insightful in an emotional moment as our children are. We had a 11-year-old camper this past summer who made it his goal to help support all of the campers he met who were feeling homesick. There were many times when we would see this boy with his arm around a peer and overhear him saying something like, “It’s OK to feel sad; I felt sad my first summer too”.

Our experience is reflective of the Markrams’ research conclusions: that those with ASD are actually hypersensitive to the emotional experiences of those around them. That “over-experiencing” of others’ emotions can be very overwhelming and can create the individual to shut down or escape into their own world.

We believe it is imperative that we not assume how others experience the world. We’ve often told parents that our kids work harder than most performing everyday tasks; it’s as if they are trying to interact with environmental stimuli while simultaneously performing long division at hearing background static. It’s hard to do so many things at once. When our campers “shut down” or retreat into themselves for a few minutes, we don’t assume they are disinterested. Instead, we suspect they are taking a moment to organize their experience. Although our campers do not always know how to express themselves in the exact ways that society expects, they deserve to be recognized as people filled with genuine feelings, rich emotional lives and yes, empathy.

– Debbie and Eric

John Elder Robison, Autism Speaks and the Akeela Community

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John Elder Robison made some waves this week when he publicly resigned from his position on the Science and Treatment Board of Autism Speaks.  (See his blog about this decision and his letter of resignation here: http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html.)  After reading this, I had many thoughts about our campers and our community.

I can only imagine what it feels like to be labeled as “disabled”.  In our six summers running Akeela, I have learned that our campers are extremely “abled” and have many talents to celebrate.  Do our campers (and their families) struggle?  Are there difficult moments, days, weeks, years?  Are there challenges that seem small and others that are life-altering and terrible scary?  Yes – of course.  However, in order for our campers to reach their enormous potential, they must be shown that they are capable of achieving their goals.

What has been most profound for me, as a director at Camp Akeela, has been watching how powerful a community can be.  Our campers, who are often left on the outside (by individual peers, by society at large, or by institutions that liken them to the “gravely ill”) thrive when they are part of a community – when they truly feel accepted and valued for who they are.  I wish that more people could see our campers at Akeela so that they could witness their successes.  Of course I support organizations that help advance science and look towards treatments that can help make the lives of those living with autism easier/better/happier.  I just wish those same organizations were also honoring and supporting the communities which celebrate the same individuals.

I want to honor JER’s leadership as he champions the rights of the ASD community.  He is certainly an example of the amazing contributions those on the spectrum make to our larger world community.

– Debbie

Asperger's Assoc. of NE Response to Newtown Tragedy

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Like the rest of the country, we watched in horror as details emerged from Sandy Hook Elementary School last Friday. As parents and childcare professionals, this represents all of our worst nightmares come true. Our thoughts go out to all of the families who were most directly affected by the events in Newtown.

At this point, there is some speculation that the suspect had been diagnosed with Asperger’s Syndrome. We hope to blog later this week with our thoughts about that. In the meantime, we wanted to repost a statement from our friends at the Asperger’s Association of New England:

AANE Response to Connecticut Tragedy

— Eric and Debbie Sasson
Directors, Camp Akeela

Holiday Family Time with a Child with Special Needs

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The holidays are a stressful time for everyone. There are gifts to buy, meals to cook and family members to visit. The joy that we all look forward to and the warm family moments around the fireplace sharing memories of seasons past are often fantasies that don’t work out the way we plan. And then, the joy becomes stress and resentment. All of this is true for most families but it is more common for families who have a child who struggles socially (including those with Asperger’s, NLD / NVLD).

Holidays bring about change and change is hard! At Camp Akeela, we do everything we can to prepare our campers for changes in routine. We try to give them as much notice as possible. (Rainy day plans are more difficult as the weather in Vermont is not always predictable!) Schedule changes are discussed and printed. We allow some time for our kids to express disappointment and frustration with any changes but then we move on and get them involved in an activity that they enjoy. When we can anticipate the events that make our children anxious, we can help alleviate (though not eliminate) that anxiety and perhaps allow for smoother sailing.

Our campers really enjoy helping others and they get very involved in our community service days at camp. The holidays are a wonderful time to remind our children of how much they have to be thankful for in their lives and to share some of that with others. Perhaps your child can choose a local charity that he is interested in supporting and can do some research on how he can support that cause. Then, the whole family can get involved in working together to give back. This is a wonderful way to spend family time and to teach children empathy. (It’s also a great way to add structure to a week without school!)

Many families have told us that they dread holidays … they spend family gatherings worrying that their child will do or say something that is embarrassing, inappropriate or rude, that he may have a complete meltdown and that everyone else will judge or give unsolicited (and unhelpful) advice. If we plan for these potential pitfalls and even predict them for key family members, the holiday may feel more relaxed and enjoyable.

Here are some suggestions for ways to make your holiday and family time run smoothly:

  • Preview any schedule changes a few days in advance and give your child a printed plan or itinerary.
  • Try to keep her routine as close to normal as possible. For example, for the week without school, try to keep wakeup, meals and bedtime as close to a typical day as possible. Maintain normal school-week expectations, when possible (e.g. limits on screen time, household responsibilities, etc.)
  • Make sure your child will find something familiar to eat at big holiday meals so that you know that he will eat something and feel valued
  • Bring along your child’s favorite game or an activity he can play with others at family gatherings
  • Bring along something she can do independently in case she does not want to participate in the group activities or conversations
  • Try to relax and enjoy your family. Things may not go exactly as planned but that’s ok … holidays never do!

— Debbie

Asperger’s and Bullying: Summer Camp Can Help!

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A mother of a Camp Akeela camper recently sent us the link to a New York Times article about school bullying: “School Bullies Prey on Children with Austism”. The author explains how kids on the spectrum, and other quirky children – those who learn differently or have unusual mannerisms or who don’t share interests with most of their classmates – are much more vulnerable to teasing and bullying at school. Of course, as directors of a camp for kids with Aspergers and NLD, this wasn’t news to us. Many of our Akeela campers feel that school represents a social world that can be fast-paced, cruel and unforgiving. They tell us that lunch and recess (and often gym class) are the hardest times of day. During class, although they may get funny looks for shouting out the right answers or not wearing the most up-to-date fashions, at least a teacher is there to intercede. In the cafeteria, they’re expected to navigate social situations on their own. For our campers, this can be extremely difficult. Where should they sit? Who can they talk to? What should they talk about?

At our final campfire on the last night of the camp session, we take some time to reflect upon the time we’ve spent together as a community. We talk about all of the campers’ wonderful accomplishments: becoming more independent, leaving home for three and a half weeks, going without video games!, cleaning their cabins every morning, making new friends, trying new activities and pushing themselves to do things out of their comfort zone. We encourage them to remember how accepted and loved they feel in that moment, the final night of camp. We tell them that we know how hard school can be at times and that not everyone they encounter will appreciate them for who they are. We tell them, “When you have a bad day, when someone is unkind, close your eyes and imagine you’re back on Miller Pond surrounded by friends who really care about you.”

As camp professionals, we believe that all children need to have experiences away from home where they feel successful, where they know that they are likable, where they are accepted for who they are. For our campers, that’s even more true. Children on the autism spectrum need to have experiences in safe environments where they can learn and grow, including learning how to fail. Those experiences give them the confidence and skills to manage the “real world”, where people can be so unkind.

– Debbie, Eric and Jaynie

Autism Awareness and an Increase in Diagnosed Children

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As reported recently in the Wall Street Journal (and elsewhere), autism diagnoses have risen sharply in recent years. The CDC announced a 23% increase in the number of people diagnosed “on the spectrum”, including as many as 1 in 88 American children.

As always when a study like this is released, doctors and scientists rushed to speculate what the change in numbers is all about. Some attribute the increase to a newer awareness in lower income families and minority groups who have previously been under-diagnosed. Others suggest that the change may be due to environmental factors, including vaccines – although this theory has been largely disputed and the original research tying vaccines to autism is now known to have been based on “bad science”. Finally, others wonder if the increase in diagnosed individuals is not indicative of a rise in the incidence of autism, but rather in increase in the awareness of doctors, therapist and parents who recognize less obvious behaviors as attributable to a spectrum disorder.

For those high-functioning kids that we know and love (Asperger’s, NLD, PDD-NOS, HFA), we definitely feel that the rise in diagnoses is at least partially due to a better understanding of these conditions. Asperger’s, for example, is a fairly new diagnosis. Many individuals were just thought of as “quirky” or “eccentric” until the mid-90s when the Asperger’s diagnosis really took hold in the US. Now, it seems as though Asperger’s is everywhere – books, movies, the news, etc. I know from our campers that being a member of this fairly new “tribe” has been somewhat of an awakening for them. They are happy to feel a part of a group – an experience that is not always familiar to them.

Regardless of why more individuals are being diagnosed, we are happy to see that there is more awareness and that people are talking about the Autism Spectrum. I turned on NPR the other day and quickly realized the segment was about ASD. A gentleman in his 60s called in and said that he was diagnosed with Asperger’s in his 50s and having the diagnosis was such a relief. He now understood why he was the way he was. It gave him some comfort. If that’s the case for many other individuals with AS, then perhaps this rise is a positive: more self-awareness, pride and connection for those on the spectrum and more public understanding, advocacy and appreciation for the “Aspies” among us!

— Debbie

Unplugging at Camp – A Break from the Digital

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I was in the gym the other day and I noticed something incredible.  The person next to me on the stationary bike had his blackberry out checking email, the girl behind me was watching a show on her personal TV, and the receptionist was behind the front desk playing a game on her iPad.  It hit me as I glanced down at my iPod that most of us are not even able to separate from technology long enough to get a work out in.  I found myself longing for the summer where I get back to nature, put my phone away and save my eyes from days of sitting in front of a computer.

All of the buzz and national attention surrounding Richard Louv’s bestselling book “Last Child in the Woods” (http://richardlouv.com/books/last-child/) about nature deficit disorder and children has reaffirmed for us as camp professionals that the summer camp experience is an excellent way for children to put away technology and reconnect with nature. Most of the potential campers we have the pleasure to meet during the off-season tell us they are very interested in computers, video games and other forms of technology.  When we meet a new camper, we are asked without fail these important questions: “Can I bring my video games?”, “Can I have my cell phone?”, or “Do you have computers at camp”.  When we respond with the very unwelcome, “no”, many of them look absolutely horrified.  Even parents say, “There is no way my child will make it without a computer and his handheld games.” Months later when these same children are at camp, we smile when they stand beaming on the dock with a fishing pole, stand at the top of a mountain they just hiked with arms raised, or fly down the zip line with a huge grin on their faces.  Once they get to camp and are trying so many new activities and meeting new people, they are not thinking about their video games or computers anymore. Many of our campers also make new friends by bonding over their shared interest and begin discussing together which level they are currently battling on a certain game.

One of the many wonderful benefits of any summer camp is a break from the digital and our reliance on technology.  Campers get the chance to experience nature, try brand new activities they never knew they would enjoy and to just be a kid.  For our campers, this break from technology is especially important. Handheld games are most often a solitary activity and for children who have difficulty fitting in at school or interacting with their peers this can be a source of comfort, but can also be quite isolating.  At camp, campers are surrounded by their peers and have many incredible opportunities to meet new people and engage in different activities. When they do not have their video games to rely on, they are able to interact with their bunk mates and practice many of the critical social skills that are sometimes difficult for them. At camp, campers can prove to themselves that they can go 3 1/2 weeks without technology and can “rough it” in the wilderness! As camp professionals, we see this as an amazing accomplishment and we hope the take home message is that kids do not need to rely solely on video games to have fun. When our campers put down their video games, they might just make a great, new friend and discover many amazing activities in nature that can become new and important interests when they return home!

An interesting article about unplugging at camp:

http://www.americanwaymag.com/hannah-viroslav-american-camp-association-iphone-camp-champions

-Jaynie

We Love What We Do!

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People often ask us why we do what we do. They wonder why we’ve chosen to spend our summers with kids on the spectrum. They can’t imagine how we find the energy or the patience, … nor a full staff of young adults who want to accept the challenge with us. We can’t understand why anyone would NOT want to do it! We have the best job in the world. Do we have tough moments? Sure. Don’t we all? That’s what makes all of the other moments at camp that much more thrilling.

When we started Akeela in 2008, people wondered how a community made entirely of “quirky” kids would work. If the campers all struggle with social skills, how could we expect them to live in close quarters and get along? We knew that our campers would not only do okay, but would truly thrive if we established the right environment. Four years later, we feel pretty great about that environment. Our campers tell us that they feel more at ease at Akeela – that they don’t have to work as hard to fit in because everyone at camp really “gets” them. They can relax and be themselves and, as a result, they have an easier time making connections. For the first time in their lives, they feel as though they are in a world made for them, not one in which they constantly have to battle to be understood. For three and a half weeks, they experience true happiness … and so do we!

We’ve had the great pleasure of watching hundreds of amazing children grow up before our eyes. One such child is Aaron, whom we met in early 2008. We sat at his dining room table with him and his parents and talked about what camp might be like for him. It was clear that Aaron was both excited and nervous. He was sweet and smart and funny. But he was also a whirlwind of energy; he walked in circles around the room, eating fruit and rocking on his heels. At camp that summer, he was well-liked and a willing participant in all activities, but was quiet and often “in his own world”. He frequently paced at meals and we regularly found him on his own at the salad bar. At the end of the session, we didn’t know what, if any, impact camp had on his life.

Shortly after the summer was over, we heard from Aaron’s mom that both family and teachers were amazed at the social strides he’d made. The following summer, when Aaron got off the bus at camp, we almost didn’t recognize him. He’d grown a few inches and seemed more comfortable. He looked us in the eye and smiled when he greeted us. He seemed thrilled to be back at camp. We ran into him less at the salad bar and he was much more engaged with his peers. He left that summer talking about the great friends he’d made.

The summer of 2010 was even better and 2011 better still. Aaron had found a second home at Akeela. We feel deeply connected to Aaron and his family and feel immensely lucky to be a part of his life. He recently shared with us a letter he wrote to his camp counselors. It was the most well-written, heart-felt letters we’ve ever read. People wonder if our campers have the ability to connect with others … if they really care about each other. As we read Aaron’s letter, we were overwhelmed with his ability to articulate his admiration, respect and gratitude for these young men with whom he lived for a few weeks.

Knowing that we played even the slightest role in Aaron’s growth and development as a person brings us great pride and fulfillment. Aaron is one of many children who have helped us grow. We owe them all a letter of appreciation for allowing us to call this our job. Maybe Aaron will help us write that letter.

— Debbie and Eric

Asperger's and Romance

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Many of you probably saw this article on the front page of last Monday’s New York Times. It’s great to see any story about Asperger’s getting such prominent real estate in “The Gray Lady”. This one in particular brings attention to a important topic: young adults with Asperger’s (or NLD or any others on the “high-functioning” end of the autism spectrum) navigating romantic relationships.

So much of what we do at Camp Akeela is to help our campers develop and practice appropriate social skills. For many of our kids, Akeela is the one place in their lives where they feel truly accepted by their peers, which allows them to form uniquely meaningful friendships and connections to others. When we first started the camp in 2008, our oldest campers were 16 years old – completing 9th grade. The following summer, we had so much demand for teenagers that we expanded the program to include boys and girls finishing 10th grade. We’ve found that camp has taken on even more significance in the lives of our campers as they move through adolescence and the world gets even more complicated socially.

It quickly became evident to us that we could do even more to help prepare these amazing kids for adulthood. Towards that end, we started a new program last summer, called Beyond Akeela. It’s for boys and girls finishing 11th and 12th grades and is essentially a hybrid of a traditional camp CIT program and a life-skills training experience. We had 18 participants in Beyond Akeela’s inaugural summer and it was a huge success. In addition to having an amazing summer at camp, they also came away with concrete skills and experience in the areas of job readiness, managing money, cooking & nutrition, college options and appropriate peer relationships. They toured colleges, attended cooking and banking classes, volunteered in a variety of community service efforts, organized and led in-camp activities, discussed relationships and sexuality, went shopping and did their own laundry, challenged themselves on outdoor adventure trips, and much more. The program culminated in a 4-day trip on which they put all their newfound skills to work while living independently (with staff supervision!) in condominiums.

Overall, it was a huge success and a program we look forward to offering for many years to come. Reading the New York Times article last week allowed us to reflect on and be thankful for the role we may play in helping a very deserving group of people find what we all seek in life: loving, fulfilling and reciprocal relationships with people who value and respect us.

— Eric