John Elder Robison, Autism Speaks and the Akeela Community

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


Fall Newsletter

Check out this newsletter from October 2013. Contents include a letter from Debbie and Eric, camper and staff updates, a photo from Akeela’s first wedding, and much more!

Akeela Circular – October 2013


Family Camp

After our campers (grades 4-12) leave camp, a different type camper arrives….families!  It’s a bit of a shift for us!  It’s strange having so many grownups around.  And yet, for the past two years, it’s been one of the most special weeks of the year for us.  This summer, 16 families joined us at camp.  We spent the days enjoying the absolutely perfect August weather in Vermont – swimming and boating, zipping on the ropes course, playing sports, doing art and most importantly, getting to know each other.  For many of our Family Camp campers, this is their first camp experience and it is very special for us to watch them gain a sense of independence and pride that they’ve never felt anywhere else.  Of course, we experience this at “regular” camp all the time but to experience this through a parent’s eyes is truly exceptional.  Parents have actually gotten a chance to witness what we do every day of the summer and it only reinforces how special camp can be.

What’s also been so valuable to us has been the relationships we’ve seen develop amongst the parents who come to camp.  We have felt so lucky to have learned so much from the parents who bring their campers to camp.  During family camp, we spend all day talking and laughing and crying with them and have a chance to hear about what life is truly like for each of them.  They form their own community of support and strength and being able to experience that has been very special for us

When we started Akeela, we always dreamed that it would be more than just a summer experience for our campers and their families.  We wanted it to be a community that had some impact on people throughout the year.  Family Camp has been one way in which we’ve done that.  We continue to think about ways to expand our mission to include more families over a greater length of time and hope that more and more children and parents will have an opportunity to experience Akeela in the future.

-Debbie and Eric


Closing Day

It’s hard to believe that the summer has passed already – There’s an old saying in the world of camping that a day feels like a week, a week feels like a month and a month feels like a year.  It explains how we can all become so close so quickly.  And yet, when we look back and reflect on the time, it seems like the month was really a week!

We never stop feeling amazed at how much our staff and campers are able to achieve together in 3.5 short weeks.  Many of our campers have never been away from home before and yet, at the end of camp, when their parents arrive to pick them up, they take them on a tour of camp as if it is their second home.  They introduce them to friends they’ve made and they “show off” their new talents.  We feel so proud to be a part of such a life-changing community.  All day today, parents have thanked us for giving their child this opportunity for growth and friendship and we are grateful for the words of appreciation.  But, we know that we had very little to do with all of the successes – we bring people together and the magic that happens at camp is due mostly to our staff and the experience that camp can bring to any child.  It’s the opportunity for independence and challenge that is life-changing.  It’s the way campers receive feedback from staff and from their peers on a continual basis.  It’s the fact that everyone at Akeela feels like they are valued and important – a part of a community.

We love what we do and feel lucky to do it.  We know how camp has changed our lives, both as children and now, as adults and are so happy to share it with a new generation.  We are honored that so many parents have trusted us with their children and believe in what we’re doing at Akeela.  While it’s always sad to say goodbye, we are already looking forward to next summer and hope to see many of our friends again in 2014.

-Eric and Debbie


Opening Day

I used to do a lot of theater when I was younger – mostly musicals – and I find myself humming “Another Opening, Another Show” today.  Most of our staff members have been here at camp with us for 8-14 days; the others have been here since the end of May. We’ve been busy getting our site ready, learning about all of our campers, talking about safety (physical and emotional), behavior, food, fun and social skills.  We’ve shared with them our vision for camp.  Eric and I dress up, make colorful signs and attempt to be funny in skits we’ve written in an effort to impart to our staff everything we believe in – mainly, that we are about to embark together on the most incredible, life-changing summer experience on the planet.  Standing in front of our staff of approximately 100 people today and reminding them of that mission, I feel confident that they really “get it”.  This is a special group of staff and I’m thrilled to work with them for the next two months.

This is our sixth summer at Akeela and I still get a nervous stomach on opening day – much like I used to as I waited backstage for the orchestra to begin the overture.  I used to start questioning myself, “Will I remember my lines”, “will my props be where they’re supposed to”, “will the cast remember their lines”, and “will I trip onstage”?  Today, as I wait for the buses to pull in to camp I ask new questions, “Will everyone feel great about themselves when they leave”, “Will everyone make a friend”, “Will they grow”, “Will they feel more confident and proud of their achievements”, “Will they feel as though they’ve been a part of something bigger than themselves”?

I’m excited.  This is what we’ve been working towards all year.  Another Opening of the most Amazing, Life-Changing Summer Experience on the Planet!

-Debbie


Dear Campers

Dear Akeela Campers & Parents,

Akeela’s fifth summer is now behind us as we prepare for summer 2013 and our second half-decade. We hope everyone takes some time to look through our past newsletters and that you’ve been reading our blog!

Don’t forget about our two exciting new(ish) programs: Beyond Akeela is for young men and women who have completed grade 11 or 12 and Family Camp is for everyone!

– Debbie & Eric


Asperger's Assoc. of NE Response to Newtown Tragedy

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

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!

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