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“I think the thing that is exciting is that if Elon Musk is reporting he has autism — whether using an outdated term or not — is for the public to see a person lift the stigma about diagnoses like autism, by whatever name it is called.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!

Connect With Our Directors

I’m pretty sure we can all say that summer 2020 did not go as planned. Everyone was scrambling to shift gears and make alternate plans. I know that we felt a huge loss when we made the decision to cancel our planned camp sessions. Because we were so busy planning for our alternate summer, we did not have time to process those sad feelings. We have heard from many campers who told us that, at different times during the summer, they realized how much they missed their friends, counselors and the sense of community they feel at Akeela. While we feel terribly that we played a part in the sadness of our campers and their families, it does remind us how lucky we are to be a part of such a special place. Perhaps 2020 will be the year that helps us appreciate everything we have.

We certainly felt lucky that we got to spend our summer up at camp with the staff members and families who joined us for Family Camp. Being on Miller Pond gave us a small sense of normalcy and enabled us to reconnect with that special place. Our staff arrived more than two weeks before our first set of campers and we spent that time getting the site ready. We worked hard preparing the tennis courts, pool, lake and art studio! The archery and golf nets had to get put up and all of our sports equipment had to be prepared. There was a lot of hard work accomplished by our team! Most importantly, our dedicated staff got a chance to take off their masks (after 2 negative COVID tests) and enjoy being a “pod” with their friends. We all appreciated the time we had together after feeling so isolated last spring.

Finally, our first autism/asperger’s family campers arrived and brought with them lots of energy and laughter. Our team was able to do what they love most – play and learn with kids and parents. For us, seeing camp inhabited with enthusiasm brought us so much joy and also some sadness; We really missed having our entire community together. While Chefs Trina and Angie made us some of our favorite camp food, the dining hall felt empty and too quiet. The lake was cool and, as always, was the center of lots of excitement and yet not having the slide out (because of COVID) was a constant reminder that this summer was different.

Still, those of us who were lucky enough to be together this summer relished our time at camp. Being with like-minded people is always restorative and this summer, that was even more true. Parents, campers and our staff formed lasting friendships and a true connection with our Akeela community. We truly missed all of our friends who couldn’t come up to Vermont this summer and we are so excited to be together in person on Miller Pond in 2021!

In case you didn’t see them, 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!

The past week and a half has been A LOT. (And has it only been a week and a half?) Like so many others, I’m sitting here at my desk in my home office. And in the background, I hear Eric helping our 5th grader with math homework, our younger daughter (in Kindergarten) is running up the stairs to show me the story she wrote and illustrated, I’m on my third cup of coffee and it’s just 9:30am. I haven’t showered. (And forget about makeup and doing my hair.) I’ve been on an average of about 3 Zoom calls a day (between work and checking up on my family and friends) and my iPhone has informed me that my screen time has increased by an hour and 42 minutes in the past week. Wow. That would be overwhelming if I felt secure that we, as a world community, were not suffering. If I were able to be together with friends, celebrate our upcoming holiday with family, travel for Spring Break with our kids – this still would feel hard. And yet… this is our new “normal”. To be honest, this isn’t a life I want to settle into for a long period of time. I’d prefer to feel more calm and less anxious.

As a working parent, it’s easy to feel like I’m not “good enough”. It often feels as if I can only excel in one area of life at a time. It’s work OR parenting, mothering OR partnering. But what this upheaval is teaching me is that – whatever I’m doing – it’s definitely enough. I don’t have to be great at everything, and certainly not perfect at anything.

Every day is not going to go well. There will be days where the kids don’t do anything educational. Days where we don’t get exercise or fresh air. We may eat chicken nuggets 2 days in a row. We will not fall apart. I’m sure many of you read the article in the NY Times, “I refuse to run a corona virus homeschool”. Reading it gave me permission to let go. Deep breath. We will get through this.

I wanted to share a few of the things I’ve been doing that have been helpful to me in the past week. (I’ll share the healthy habits and will just mention that in addition to these helpful habits, I’ve also been eating junk-food and watching too much mindless television…it’s all about balance, right?!)

Breathe

It’s so simple. We do it every few seconds. But sometimes, it’s important to do it with intention. I took a MBSR (Mindfulness Based Stress Reduction) course at Penn a few years ago and have tried to dust off what I learned. It takes practice and patience but it really does work. Just 5 minutes a day to stop everything else and focus on my breath really helps. And if I can, 5 minutes in the morning and 5 before bed makes life feel less overwhelming. To start, I highly recommend letting someone guide you through a meditation. I love the free app called Insight Timer. You can look for what you want/need there based on theme AND time limit! (Start with short sessions!) In a few days, I’ll be leading a mindfulness session for our virtual Akeela community and you can come listen to what I find helpful in my own practice.

Discover a hobby or task that brings you joy

I love to bake bread. I love the fact that I have to stop and focus on one thing at a time. I love the way the dough feels and I love creating something that I can then share with others. (Maybe I’ll lead a bread baking session online for the Akeela community too!) What makes you feel good? Did you have a hobby a long time ago that made you feel that way? Maybe you had to stop because you didn’t have time. Try again now. Knitting? Writing? Singing? Playing an instrument? Yoga? Dance? Gardening. Don’t do it WITH anyone. Do it yourself and enjoy the solitude.

Engage in a task that makes you feel in control

Go through your closet and get rid of the clothes that don’t fit. If you’re like me, you have old suits from the 90’s that no longer fit, are out of style and are no longer needed! (I don’t know any camp directors who wear suits to work!!!) Maybe sorting through your Tupperware will make your cabinets feel roomier, and kids are great helpers with sorting! Have your kids look through their clothes and put a few bags aside for future donations.

In a time where we feel trapped and without choice, doing something that feels useful and organizing can give us the same internal sense of organization that we’re all craving now.

Get rest

I’ve heard from many people that they’re struggling to get a good night’s rest. Me too. I pride myself on getting a solid 8 hours a night of high-quality sleep. Well – that’s not currently the case. I’ve been tossing and turning this past week. A few thoughts about healthy sleep:

• Keep your screens out of your bedroom. You should not be looking at a screen an hour before you want to fall asleep.
• Try to meditate or stretch for 10 minutes before you get into bed.
• Wake up at the same time every day. Our circadian rhythm is set by our wake time so it’s important that we stay on a regular schedule.
• Get outside – sunlight is really important for sleep cycles and while you’re outside, get exercise! (But at least an hour before bed!)

Turn off the news

It’s hard not to become glued to our sources of news. We want to know what’s happening. But you know what? No one really knows. We need to wait and see and that’s not what we want to hear. Things are changing rapidly and I know I’m struggling to keep up. I’ve found that reading too much or watching too many news stories just amps up my anxiety. Take an inventory of where you are. Do you feel more anxious, grumpy, impatient, physically ill after engaging with news? Does reading about other people’s complaints, struggles, illnesses on Facebook make you feel worse? Then stop reading it! Just put it away. Take a break. Maybe tomorrow you’ll feel stronger, better, less hopeless.

Finally… hug your partner, your kids

Call a friend who makes you happy. I had a virtual cocktail hour with my cousins – the last time we were all together was for a funeral over a year ago. This was a perfect excuse! Find joy in the small things and, if you’re anything like me, you’ll need to remind yourself that this is temporary. When I was little and afraid of thunderstorms, my parents would get out a book by Mr. Rogers who said that thunder storms never last more than 15 minutes. (He’s really right, by the way!) We just need to weather the storm.

Hello, my name is Katerina, and I’m currently 24 years old. I can proudly say I was camper at Akeela for many years (until I aged out). For my guest post, I wanted to reflect on my experience as a camper at Camp Akeela and how the skills I learned there helped me continue to succeed in my life, even after my time at camp was finished.

Flashback to the summer of 2010, when Disney Channel Original Movies and trading friendship bracelets were childhood staples. That summer, I was one of the older campers, residing in Bunk 13. My bunk had just returned from our activities at the farm. It was fun, but for me one of my challenges was mess, so farm activities were a lot of hard work as well. I was relieved for my counselor to tell us it was free time; she told us we could play soccer or just sit in front of the cabin and hang out. I always liked being able to write in a journal. This particular day, my counselor encouraged me to try something new, so I agreed to play soccer for a bit first. It proceeded to downpour. We all had to run back to the cabin, some of us now soaked from running in the rain! To pass the time, we sang songs from the Hannah Montana movie, and I taught my bunkmates all the choreography from the movie.

I didn’t know it then, but in that hour of free time, I shaped a vital part of what made me who I am and the skills that make me unique. I learned that I could work in a team. I learned that I enjoy having a creative outlet, such as dance or music (rather than my bunkmates who found their outlets playing soccer or other more athletic activities). I also learned that even with my social challenges, I thoroughly enjoyed being with people, and even more so helping people.

Now skip forward to May 2017, and I am a graduating senior at Colby-Sawyer College in New Hampshire. I have successfully lived in mainstream housing on campus. My major is Media Studies; where I learned how to write and make creative projects that can help people. (In my case, my senior capstone project was creating a short film about anxiety and living uniquely.) I have also choreographed and taught dance to college peers, and displayed my dances school-wide through college recitals. I created my own club on campus to encourage friends to get together on Friday nights to watch some TV shows and movies while catching up; my own version of what Akeela free time did for me. Now post-grad and in the workforce, I work full-time as a teacher in a daycare center. I get to help children of all abilities grow and learn how to be their best selves. Looking back, I would not be where I am today had I not been able to learn and develop skills through camp.

So to any Akeela campers and families (prospective or otherwise) reading this, I want to leave you with this thought. Being a camper influences your life in so many ways that go beyond the right now. It is more than just three weeks of camp. This is an opportunity for you to discover what makes you … well, you! You can learn all about the things you like to do, and some things you don’t like (and that’s okay, it’s just as important!) Lastly, and this helped me a lot, it is a chance to meet other people like you. Your differences and challenges can come with a lot of feelings, but being with other people who might feel the same as you and understand what you’re dealing with can make conquering your challenges that much less intimidating. Being a part of Camp Akeela shaped me into who I am, and it can do the same for you if you take on the challenge.