Popular and news media tend to focus on the challenges that neurodiverse individuals face, but here at Camp Akeela we help campers with Aspergers Syndrome and Autism overcome social difficulties and embrace who they are so they can go out into the world and pursue their dreams! That’s why we find it so affirming to our campers when we can tell them about wildly successful people who are also, as we like to say, quirky. Elon Musk has entered the chat!

Elon Musk, the billionaire and founder of Tesla Motors, SpaceX, SolarCity and PayPal – and most recently, Dogecoin cryptocurrency advocate – announced last month, while hosting Saturday Night Live, that he had been diagnosed with Asperger Syndrome, which we hope will inspire neurodiverse teens to pursue their dreams. While not everyone desires to be an entrepreneur or billionaire businessman, our obvious takeaway is this – don’t let NVLDs hold you back!

As Dr. Matthew Siegel, VP of medical affairs at Maine Behavioral Healthcare in Portland said, when interviewed by WebMD, after the announcement:

“I think the thing that is exciting is that if Elon Musk is reporting he has autism — whether using an outdated term or not — is for the public to see a person lift the stigma about diagnoses like autism, by whatever name it is called. And people can see that individuals with autism, some, can be quite successful and part of our society.”

Last year we discussed Chris Rock’s similar announcement that he had been diagnosed with a non-verbal learning disorder. In addition to building confidence in our campers, we hope the growing list of successful neurodiverse people also helps remove the stigma created by how these diagnoses are often treated in popular media and the general lack of awareness and understanding. As Musk aid on SNL:

“Look, I know I sometimes say or post strange things, but that’s just how my brain works,” he said. “To anyone I’ve offended, I just want to say, I reinvented electric cars and I’m sending people to Mars in a rocket ship. Did you think I was also going to be a chill, normal dude?”

Ain’t that the truth! If you’ve followed Musk on social media, you know he’s certainly quirky, but when you look at what this man has achieved before the age of 50 – well, the results speak for themselves. And we love that Elon feels comfortable joking about what makes him unique – how boring would be it be if none of us ever did that?

While Elon didn’t dwell on the topic, we hope that younger readers of this blog will use this announcement as a source of encouragement and that the parents in our audience will share this and other success stories with their children, as we all try to find our way in this world.

Photo Credit:The Royal Society, CC BY-SA 3.0, via Wikimedia Commons

Last month, we had the pleasure of presenting a webinar with our colleague Elise Wulff from MGH Aspire in Boston. This was part of a webinar series offered by CampLauncher. The topic was the importance of setting limits and pushing our kids to take on challenges in an effort to raise children who are resilient. You can watch a video of the webinar using the link below. In the meantime, here are a few of Debbie’s thoughts on the topic.

As parents, our job is to keep our kids safe while also trying to shape them into decent human beings who will one day be able to be ok without us. It often feels like we’re going against our parental instincts to force our kids to struggle. We need to shift our notion of our roles as parents. Helping our children – particularly those diagnosed with Autism or Aspergers – work through the struggle is what enables them to grow up to be independent and resilient.

There is a great deal of research published about the importance of raising children who have grit. I encourage you to read anything by Angela Duckworth, and to watch her TED Talk about Grit. In fact, she spoke to us at the largest gathering of camp professionals a few years ago and Eric and I were struck by how naturally camp works on teaching these important skills to campers with ASD and NVLD.

Camps force children to step outside of their comfort zones. Especially for children with ASD or NVLD – sticking with what’s comfortable and familiar is a first choice. If we were to allow our children to keep doing what makes them feel safest, they might never learn what they’re capable of. They may never learn new skills, make new friends, try new foods!

Camp is an example of a way that many parents choose to push their children in a healthy way to develop grit. Sleeping in a new place, living with 10 or so other people, swimming in a lake with fish, eating foods that might be different colors, textures, smells! Climbing a rock wall, going on a hike, petting a goat – these seem like simple tasks for some people but for many children, some of these tasks seem impossible or – more often, just don’t seem necessary. But when we encourage children (any child) to do something they think they can’t or say they won’t do, and then they see that they can do it – we have just taught them that the leap of faith makes it worth it. Then – the more they do that thing or have the experience of trying something less preferred, they get better and better at it and they are more likely to do something totally new the next time it comes up.

So, while the push might be hard for us as parents – and it takes effort, we know – at the end, it will be worth it.

As most people have already heard, comedian Chris Rock shared that he was diagnosed with NVLD (Non-Verbal Learning Disorder) in September. All of the entertainment outlets – along with the TV show Rock was promoting, of course – shared the news with the world and found themselves having to teach the public what NLD actually is! It’s helpful when someone famous shares personal information with the public as it often has the effect of educating others. We’re thrilled that this often overlooked and misunderstood diagnosis is getting a bit more attention.

Camp Akeela specializes in young people who have Asperger’s and NLD (aka NVLD). When people see the term “Non Verbal Learning Disorder” on our website, they sometimes ask if that means that our campers are “nonverbal”, meaning unable to speak. In this regard, the name of the diagnosis could not be more misleading! In truth, and Chris Rock is now a very shining example of this, those with a diagnosis of NVLD (or NLD) are highly verbal. Our campers are incredibly bright and quite adept at oral communication.

Rock received his diagnosis after a friend wondered if Rock had Asperger’s; the two diagnoses overlap a great deal. Like individuals with a diagnosis of Asperger’s, those with NLD often find it challenging to initiate and/or maintain relationships with others. They may see the world in a more black and white or rigid way and many are not diagnosed earlier on in their childhoods because they are doing so well in their academic setting. All of this applies equally to many people who identify with the Asperger’s label, or a similar ASD or neurodiverse profile.

At Akeela, we frequently talk about labels being unimportant in almost all settings. To a great extent, labels are most useful in that they help kids and teens receive the services they need and deserve. Schools and insurance companies often look for the official diagnoses before approving those services. However, we’ve come to learn that there is another way in which labels and diagnoses can be important: Many of our campers tell us that having a professional tell them why they might be struggling socially can be life-changing and affirming. It gives them a language with which to better understand themselves and a community to which they belong.

I can only imagine how Mr. Rock felt when he got the diagnosis. In interviews, he alludes to a new sense of understanding and an ability to push himself in new ways, in an effort to learn and grow. As an example, he recently started to learn how to swim and he views diving into the deep end, even though it filled him with fear, as a great metaphor for his life today. If more people are aware of what it means to be living with the cluster of traits that make up NLD or Aspergers or autism spectrum disorders, then maybe they will have access to more support and will feel that they can dive into the deep end when they’re ready.

Speaking of perfect metaphors, there is no better first step off that diving board than going to sleepaway camp!

Late this spring, we were planning our Akeela Family Camp and I was so thrilled to be a part of the fun and excitement. Much to my surprise, I got a call in May, inviting me to spend the summer at another camp! Our colleagues at Lake of the Woods and Greenwoods Camps in Decatur, Michigan were running a modified version of their regular camp program and asked if I could join their summer leadership team.

As much as I love Akeela, I could not pass up an incredible opportunity to help our fellow camp professionals and to learn just what it takes to open camp successfully in a COVID-19 world. I made my way out to the Midwest in mid-June to assist with staff training, camp set-up and to fill the role of middle aged boys division leader (the Akeela equivalent of a Head Counselor)! As you can imagine, a lot of adaptations must be put in place in order to make camp safe in the current health environment. For starters, all Lake of the Woods campers were required to receive a negative COVID test result a week prior to the camp’s opening day. Meanwhile, we made sure that all cabins and buildings had extra space and ventilation, adjusted virtually all of the dining hall meal service procedures, and planned activities that were able to run without risking cross-contamination between pods of campers. (All very technical stuff!)

Coronavirus Precautions for Summer Camp

Once campers arrived, campers took their second COVID test, which gave results within 15 minutes. These two tests taken within a week of each other gave us confidence as we built a COVID-free “bubble”. Nevertheless, as an additional precaution, campers kept their mask on and stayed in close proximity to their cabin-mates. On the fifth day of camp, everyone tested negative yet again, allowing us to progress to a phase in which campers could enjoy outdoor activities within their “pod” without masks. In retrospect, this all sounds fairly straightforward and simple. However, there were so many factors that were tough to foresee and consider until the moment, which at times was a little scary!

As all of this was happening, the incredible staff were extremely diligent with disinfecting all program equipment, whether that be sports balls, life jackets, or even harnesses and ropes at the ropes course! Holding each other accountable with appropriate distancing, hygiene and masking was the key component of remaining safe. I learned through this process the amount of testing, equipment and thorough cleaning required to maintain safety.

Of course, all of this mask-wearing and distance-keeping felt a little weird. There was less singing, chanting, and interaction than normal. However, we all understood that these minor restrictions were the best way to keep everybody healthy and have as “normal” a camp experience as possible. And ultimately, that’s what we accomplished. It was truly a successful summer, in every sense of the word. Everyone at Lake of the Woods was healthy and was overjoyed at getting to enjoy a summer at camp.

Despite the jubilation of completing a summer with hundreds of campers and staff and zero positive cases, there were special aspects about Akeela that I missed dearly! Our daily evening meetings and announcements of recognition, the Akeela Pageant, digestive dance parties, and hike days – just to name a few!

With the knowledge I gained from my experience at Lake of the Woods and Greenwoods, I am confident that we can adapt Akeela in manageable and digestible ways in order to open safely for 2021. Our returning staff are so excited to get back on the shores of Miller Pond and make the 2021 summer an experience for campers one they will never forget! In the coming months, we are excited to keep in touch with Akeela campers and families, as we diligently put together a safe and enjoyable program that will have camp feeling like camp again, despite living in a world where we need to be a little more careful. We can’t wait to see you all at camp!

Ben

We hope you’ll check out the latest issue of Camp Akeela’s monthly newsletter! In this edition, we highlight a couple of recent blog posts.

One is a piece about Summer 2020: it was a very different summer for all of us and we were extremely sad that our regular camp sessions weren’t able to run. At the same time, we had a wonderful time at Akeela Family Camp and we learned a ton about how to run a safe, healthy camp in a COVID-19 environment. That experience, along with lessons learned from our colleagues who ran successful camps this summer, have made us feel 100% ready to open Akeela in the summer of 2021. We are counting down the days until then!

The other blog that’s highlighted in the newsletter is a piece that Debbie wrote about some strategies we can all use to maintain feelings of control in such a new and unpredictable world. Everyone feels less anxious and happier when they know what to expect from their immediate future. That’s even more true for many of our campers, who really thrive when things are “previewed” for them as much as possible. In her blog, Debbie recommends that parents do the following:

1. encourage their kids to find social outlets with friends
2. create family schedules of activities and explicit expectations (including chores!)
3. involve their kids in advance planning of meals
4. get everyone outside and active
5. use a calendar to mark future events to look forward to, including the start of camp next summer!

Also in the newsletter is some “Good News” about Akeela wedding engagements and marriages, along with some photos from our summer at camp.

Read the entire October 2020 Newsletter here.

It’s hard to believe that summer has come and gone. When we started hearing about the coronavirus, we were confident that “they” would have it all figured out well before camp was scheduled to start. It seems like ages ago we were on bi-weekly calls with our colleagues discussing PPE and testing. In reality, it’s been about six months. Our two daughters started school virtually and we’re working remotely with our year-round team, working hard on planning for the 2021 camp season. Managing work and school plus all of our other responsibilities like grocery shopping, meal prep, cleaning the house, commitments to organizations has been challenging. While this was all novel in the spring, it’s now become tedious, tiresome and frightening – as we’re sure it has for many of you.

For our campers (many of whom have a diagnosis of ASD or NVLD), knowing what to expect ahead of time is very helpful and often an important tool in managing their anxiety. So much about today’s world makes it impossible to have that security of knowing what to expect. I often think about what I can do to help our daughters (and ourselves, frankly) feel safer. What can we do to help our children – especially autistic children and those with Aspergers Syndrome – feel more in control and have more agency during these uncertain times?  Here are some suggestions:

1. Encouragement: Have your camper come up with an activity (outside of school) that will enable them to interact with other kids through a shared interest. This might have to be virtual for now but could evolve into an in-person activity in the near future. For example: learning a new instrument, exploring a new hobby (a craft project like learning how to sew a quilt or clothing), or joining a virtual game of Dungeons & Dragons.
2. Schedules: Create a family schedule for the weekends when everyone can pitch in. Perhaps one morning is set aside for everyone to help clean your living space. This gives you an opportunity to teach your children valuable life skills and also provides some help with tasks that need to get accomplished anyway!  
3. Family Meal Planning: Have a family meeting to figure out meals for the week. Can you ask your camper to prepare their own lunches? (This can be done the night before on school days or can be left on a shelf in the fridge with a piece of tape with his/her name so they know what’s been set aside.) Perhaps campers can help make a grocery list and learn how to help prepare meals. Many of our campers love to cook or bake and this might be a great time to help them develop this skill.
4. Get Outside: Encourage campers to get outside. Walking the dog — for a set minimum amount of time — is a great daily activity for our ASD and NVLD campers. One of our Family Campers this summer told us that his son has to walk the dog for an hour before returning home!  No pets? Campers can put on a mask and bike, scooter, walk in the neighborhood/city with a sibling or friend. When it’s raining, campers can still go out for a walk or can make use of any covered outdoor space.  
5. Look Forward: Finally, having something to look forward to is always helpful.  We’re counting down the days until Akeela 2021. Perhaps your camper wants to take a calendar (or print one from the computer) and start tracking the days until he/she will be with us at camp! 

– Eric and Debbie Sasson
Your Camp Akeela Directors

In case you hadn’t heard, our dates for summer 2021:

• 1st Session: Saturday June 26th – Monday, July 19th
• 2nd Session: Thursday, July 22nd – Saturday, August 14th

If you’re the parent of a child with autism, asperger’s, another nvld or who is otherwise quirky, find out how to apply for camp next year or reach out to our staff today!

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