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

Camp Arrival Day

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When I was asked to be a “guest blogger” I started thinking about the start of the summer and in particular, arriving at camp. Arrival Day is a big deal. Some people find it exciting, some totally overwhelming … and I’m talking about everyone: campers, families, staff, newcomers and returners. I come from the UK, where camp isn’t nearly as much a “way of life” as it is for many in the US. When I first started my camp career many years ago, I wasn’t entirely sure what to expect. Yes, I’d seen movies set at camps and read all of the information that I’d been sent, but it was all a bit of a voyage into the unknown. I had my safety net though, as I knew a couple of people at that camp. Years later, when I started working at Akeela, it was a different story. This time I knew the basics of camp life but didn’t know anybody at Akeela. I’d spoken with Debbie and Eric on Skype, but that was it. Both very nerve-wracking experiences, but both very positive experiences. I was made to feel so welcome at each, and quickly came to feel like a part of the family.

Over the years, I’ve seen many different ways of people handling their emotions on Arrival Day. From those who arrive filled with energy, eager to see old friends and have new experiences, to those who experience more difficulty with their transition: the camper who refused to enter their cabin because “it smells of wood”, the boy who refused to speak for 8 days and would only communicate by scribbling notes, the girl who was so over-stimulated that she couldn’t stop talking, barely even pausing to draw breath.

The arrival that will stay with me forever though, comes from my second year as a Unit Leader at my old camp. Arrival Day was going smoothly, and eventually the time came when the buses arrived, and everyone had arrived. I was performing my duties and checking people off on my list, when I realized that one was missing. At pretty much the same moment, my walkie-talkie crackled into life and asked me to make my way to the Health Center. When I arrived I was confronted with the sight of a young man, sobbing and on the verge of hysteria. One of the nurses pulled me to one side and told me that he’d been like this for a lot of the bus ride, and so they got him off the bus at the office and brought him straight to the Health Center to try and calm him down. I sat down and talked to him for a good couple of hours. I found out that he was homesick, that this was the first time he had been so far away from home and that he thought that he had made a big mistake coming to camp for the summer. Over the two hours, he calmed down a lot, and when I eventually asked him if he felt ready to go down to the bunk and meet people he nervously agreed.

The thing is that this was not Camper Arrival Day, it was the Staff Arrival Day! Martijn was a 22 year old counselor who had come on his own from the Netherlands. Well, it took Martijn a few days to come out of his shell, but he turned out to be one of the most empathetic and engaging counselors I have ever had the privilege of working with. He came back to camp for three years and did some fantastic work with the campers that were placed in his care. We’re still in touch to this day, and he always reminds me of his inauspicious arrival and how he didn’t think he would make it that summer, and I think that’s what will stay with me.

In fact, I suppose that’s what I’m trying to say in this blog. No matter how nervous you feel about coming to camp, we’ll do our very best to help you through it and get you to have an amazing summer. Everyone that I’ve mentioned here went on to have a great time and made new friends, enjoyed their activities and did better than they thought they would with being away from home. Sometimes these things aren’t the easiest, and that’s OK – but there are always people who are there to help and make you feel better.

– Rob Glyn-Jones
Camp Akeela Head Counselor

Tri-State Camp Conference – Getting the word out about Asperger's at camp

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Eric, Jaynie and I just returned from 3 days with 5,000 other camp professionals. When you spend your entire year getting ready for the summer, working in an office with two other people, it’s extremely important to take opportunities to share ideas with others in your field. We’re lucky. Because we are a part of the CampGroup family, we often get together with 13 other sets of camp directors to discuss “best practices” and to support each other in our work. However, nothing compares to the American Camp Association’s Tri-State Camp Conference held annually in March. It is an amazing opportunity for us to talk with other camp directors, to learn from each other and for us to share our own knowledge and experience with our peers.

This year, Eric and I presented two sessions. The first was called, “What is Asperger’s and What Does it Look Like at Camp?” We believe passionately in helping others understand more about Asperger’s – especially at camp. Eric and I have worked at many “traditional” summer camps where children on the spectrum are expected to “fit in” with their typical peers without the camp staff truly appreciating these amazing kids. We want to help camp professionals understand what kinds of training and accommodations are needed to help a child with AS really thrive. More importantly, we believe that not all camps are truly equipped to make the necessary changes in their community, program and staffing to best work with campers on the spectrum. We encourage our colleagues to ask questions of new camp families and to work together as a team with parents to make sure that camp will be the right fit. Unless camp professionals understand AS well, they cannot make these decisions.

Our second session was a 3-hour workshop where Eric and I spent more time focusing on the idea of “fit”. We spoke to a group of camp professionals about helping families find the right camp for their child. We encouraged them to explore the way they gather information about perspective campers so that they can give parents honest feedback about how successful they feel a child may be in their camp community. We suggested that having a camper “get by” or “survive” was not good enough; we believe that all campers deserve a setting in which they can THRIVE!

As always, teaching and learning is both exciting and energizing and we returned to our offices in Philadelphia with many new ideas and plans for this summer and beyond! We’re grateful to be in a profession that values continuing education!

— Debbie

p.s. – For a related article that we published, see Striving for More than “Surviving”.

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

Asperger's – A Disappearing Diagnosis?

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In the world of Asperger’s, there has been a lot of buzz for the past two weeks. The NY Times published an article, “New Definition of Autism Will Exclude Many, Study Suggests”, and our inboxes were suddenly full. Everyone wanted to weigh in on this important moment in time … a time when the Asperger’s Diagnosis might disappear. Or will it? At Camp Akeela, many of our campers proudly wear the “Asperger’s badge” and feel like the diagnosis gives them a sense of identity. It makes them feel like they belong to something important. For many, it’s the only group with which they really identify.

Then they come to camp. Akeela provides our campers with an opportunity to belong to a community and to feel like they are a part of something bigger than themselves. Many of our campers do not have a diagnosis or they don’t identify with the one they were given. Nonetheless, they connect with one another. Does a diagnosis matter? Unfortunately, it does matter for practical purposes. Without a diagnosis, people worry that they will no longer get much-needed educational or psychological services (and funding). All children deserve the support they need to reach their optimum potential. It’s a shame that a diagnosis is what determines that. Wouldn’t it be nice if children were able to get the services they need without having to fight for them every step of the way? It would make such a difference if educators and those in the mental health fields understood the intricacies of the behaviors and emotions BEHIND the diagnoses they use to determine eligibility.

— Debbie and Eric

Camp Builds Resiliency

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A recent article in Psychology Today (here is the link) by Michael Unger highlights how meaningful camp is for children. The author states that, based on his research about resiliency, camp clearly teaches campers life skills that can’t be taught elsewhere. Of course, we agree and have felt strongly about this for as long as we’ve been campers ourselves. For our campers (many of whom have Asperger’s Syndrome) this is even more true.

Our campers often tell us that they don’t fit in at school, in their communities, even with their siblings. Camp Akeela provides them with an opportunity to meet other children like them who understand what their world is like. At camp, they can be themselves without having to work so hard to fit in. Besides meeting peers who understand them, campers at Akeela learn about others. They understand that the world is larger than themselves and that they can be a part of it if they open up their minds. Unger writes, “Perhaps best of all, camps offer kids a chance to feel like they belong. All those goofy chants and team songs, the sense of common purpose and attachment to the identity that camps promote go a long way to offering children a sense of being rooted.”

All camps give campers a chance to learn how to be independent. This includes taking care of themselves (showering, brushing their teeth, remembering to use deodorant), taking care of their belongings (making their own beds, folding their own laundry), and taking care of their new relationships they have formed at camp (learning to say sorry, welcoming new friends into a group, showing interest in those around them). These are all life skills that all children must learn. For our campers, we feel these skills are even more important. Sometimes, as parents, we lose our voices with our children and begin to feel less effective. At camp, children are empowered to do the things their parents have been asking them to do on their own … sometimes because a new (“cool”) counselor is asking them to do it, sometimes it’s because the whole group is doing it, but usually, we find that campers do these tasks because they want to know they can. And when they leave camp, they feel great about themselves.

Camp isn’t just about learning how to sail or make friendship bracelets … it never was. It has always been and always will be about helping children become independent and resilient people. It is what we are most proud of as camp directors.

— Debbie