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

Homesick and Happy – A Book Preview

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As an avid and unapologetic reader of novels, I very rarely get excited about the publication of a non-fiction book. (Compared, for example, to the thrill I feel whenever I think about the May 8th release of John Irving’s next novel!) Yet, here I am, devoting this blog post to a parenting book coming out on May 1st.

Homesick and Happy: How Time Away from Parents Can Help a Child Grow is the newest work by Michael Thompson, author of (amongst others) Raising Cain and Best Friends, Worst Enemies – Understanding the Social Lives of Children. If you’ve read his books, or been lucky enough to hear him speak, you know that Dr. Thompson really understands child development and that he shares the results of his research with humor, compassion and warmth. In a recent issue of the American Camp Association magazine, he described his approach to writing Homesick and Happy. Rather than criticize overprotective parents, he empathizes with every parent who wants what’s best for his/her child … and makes the case for going away to sleepaway camp as a critical step in a child’s social and emotional development.

Here is Amazon’s description of the book:

In an age when it’s the rare child who walks to school on his own, the thought of sending your “little ones” off to sleep-away camp can be overwhelming—for you and for them. But parents’ first instinct—to shelter their offspring above all else—is actually depriving kids of the major developmental milestones that occur through letting them go—and watching them come back transformed.

In Homesick and Happy, renowned child psychologist Michael Thompson, PhD, shares a strong argument for, and a vital guide to, this brief loosening of ties. A great champion of summer camp, he explains how camp ushers your children into a thrilling world offering an environment that most of us at home cannot: an electronics-free zone, a multigenerational community, meaningful daily rituals like group meals and cabin clean-up, and a place where time simply slows down. In the buggy woods, icy swims, campfire sing-alongs, and daring adventures, children have emotionally significant and character-building experiences; they often grow in ways that surprise even themselves; they make lifelong memories and cherished friends. Thompson shows how children who are away from their parents can be both homesick and happy, scared and successful, anxious and exuberant. When kids go to camp—for a week, a month, or the whole summer—they can experience some of the greatest maturation of their lives, and return more independent, strong, and healthy.

At Camp Akeela, we talk to campers all the time about how it’s okay to feel both homesick (sad about missing their parents, siblings, pets, house, bed, foods, etc.) AND happy (glad to be making new friends, having new experiences, feeling confident and valued, etc.) at the same time. As Dr. Thompson seems to understand, we have very similar conversations with the campers’ parents! Every parent who sends their child into our care makes a decision to tolerate their own anxiety in exchange for the unique and life-changing benefits that camp has to offer.

— Eric

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

Sleep for Kids on the Autism Spectrum

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In addition to being the camp director of Camp Akeela and having a doctorate in clinical psychology, I’m also training to become a certified sleep consultant!  I’ve been thinking a great deal about children and sleep and have found it interesting to focus on children on the Autism spectrum, specifically those with Asperger’s Syndrome (AS).

It is estimated that between 40% and 80% of all children on the spectrum suffer from sleep problems (falling asleep, staying asleep and early waking).  Scientists are unsure exactly what causes such a high incidence of sleep challenges for kids on the Autism spectrum but we believe that a big part of the issues stem from struggles with integrating our often over-stimulating world.

Our observations from Camp Akeela, where most of our campers have a diagnosis of AS or NLD, are that kids on the spectrum have to work really hard all the time to maintain a level of “homeostasis” or feeling good.  We often say that it’s as if our campers have to walk around the world on a daily basis performing their every-day tasks while simultaneously doing long division in their heads.  Living in a “neuro-typical” world is hard work.  In order for them to be at their best, we have found that our campers need to be well-rested.

Here are a few of our suggestions:

  • Like all children, those with AS need to exercise daily to stay healthy.  In order to do this and get to sleep at a reasonable hour, kids should try to exercise at least 2-4 hours before trying to get to sleep.
  • Children with AS most likely require an extended amount of time to calm down and become sleepy.  At least 30 to 45 minutes should be put aside in the child’s daily schedule to allow for this…which means that homework may need to get done earlier or saved for the morning.
  • Research shows that dim lights while getting ready for bed create an increase in melatonin (the “sleepy hormone” in our bodies).  A  light dimmer in the child’s room might be well-worth the investment.
  • Children on the spectrum need a great deal of predictability in their lives…bedtime routines are no exception.  Children benefit from a “sleep rules” or “sleep schedule” chart in their room that is age appropriate and should include the evening schedule from showering/taking a bath, to dimming lights to putting on PJs to reading to turning off the light and going to sleep.
  • Children on the spectrum often struggle with sensory integration.  Many of our campers have found the use of weighted blankets to be helpful. Others have preferred to sleep on the floor rather than a “squishy” mattress.

Although it feels counter-intuitive, many kids who are having trouble falling or staying asleep at night are often over-tired and require an earlier bedtime.  It is not unheard of to have school-aged children on the spectrum in bed with the lights off between 7:30 and 8pm.

If you’re looking for a great general resource on sleep for babies and young children, check out: Healthy Sleep Habits Happy Child.

— Debbie

Welcome to our blog!

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We’re so excited to share this blog with you.  We will mostly be writing about what we know best: Asperger’s (and NLD, PDD-NOS, …) and summer camp.  But we’ll also share our thoughts about general child development and parenting, along with specific news from Camp Akeela and whatever else catches our interest in the world!