Asperger's – A Disappearing Diagnosis?

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

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

Homesick and Happy – A Book Preview

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

Choosing a Special Needs Camp – Part 2

In our last post, we talked about why camp is such a unique and valuable experience for kids with special needs. We also outlined a few steps to help parents start looking for the best camp for their child.

Once you’ve done some self-reflection about what you’re looking for and conducted some research on what’s out there, you’re ready to take the next step, which is to speak with the camp directors. These are the people who will have ultimate responsibility for your child’s well-being. You should feel comfortable enough to speak candidly with them about your family. Most of all, they should understand your child’s needs and be passionate about changing the lives of young people!

Questions to ask the camp directors:

  • What is the camper to staff ratio? How many staff members and campers live in each bunk?
  • How do you recruit and train the staff? What are your basic requirements for age and related experience?
  • What are the living accommodations? Will there be enough space to accommodate my child’s needs?
  • What can you tell me to confirm that you really understand my child’s special needs?
  • What is the application process?
  • Are you willing to meet me and my family?
  • Tell me about how you got involved with this camp?
  • How will you help prepare my child (and me) for camp before the summer?
  • How will the directors and staff communicate with me while my child is at camp?
  • Is there flexibility in the camp program to accommodate a challenging day or a need that my child has?
  • How much structure and choice are built into daily activities?

The camp experience is an incredible gift to give your child. You’re now well on your way to finding the camp that’s the best fit for your camper!

— Debbie and Eric

Choosing a Camp for a Child with Special Needs

Overnight summer camp teaches skills in a variety of disciplines – sports, arts, nature and the like. However, the enduring value of summer camp is not the skills that it teaches, but the values and traits of character that it imparts. A camp experience teaches children to work together more cooperatively, resolve conflicts, assume responsibility, and develop self-reliance and self-confidence.

Parents of kids and teens with special needs may be reluctant to send their children to sleep-away camp. Yet, these children – specifically those who struggle socially – stand to benefit the most from the right camp experience. More than anything, great camps teach socialization skills. Overnight camp is an environment in which children learn about living, working, and playing together in a supportive community. Many children form their fondest memories and their deepest friendships at camp.

Of course, not every camp is equipped to address the specific needs of every child. Finding the right camp is paramount to a successful experience. Here are some suggestions for navigating the process:

Selecting a Summer Camp for Your Child

The first step should be to discuss the process as a family. Make sure you and your child are on the same page. It’s never a good idea for him/her to find a brochure in the mail before you’ve talked about camp!

Questions to ask yourself and your family

  • What is on my “must-have” list? (e.g. certain program offerings, minimum session length, …)
  • Will my child “regress” without certain interventions?
  • What type of environment is necessary for my child to make progress in his social/emotional/educational development?
  • Is my child prepared to live in a more independent way?
  • What kind of support does my child need to be successful?
  • What are my goals in sending my child to camp?
  • How important is it to me what the other campers are like? How similar to my child do they have to be in order for him/her to fit in well?

You’re now ready to do some research. Use the American Camp Association, the Web or resources within your community to identify potential camps. Request and review camp websites and brochures.

In our next post: Questions to ask the camp directors. Stay tuned!

— Eric and Debbie

We Love What We Do!

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

Asperger's and Romance

Many of you probably saw this article on the front page of last Monday’s New York Times. It’s great to see any story about Asperger’s getting such prominent real estate in “The Gray Lady”. This one in particular brings attention to a important topic: young adults with Asperger’s (or NLD or any others on the “high-functioning” end of the autism spectrum) navigating romantic relationships.

So much of what we do at Camp Akeela is to help our campers develop and practice appropriate social skills. For many of our kids, Akeela is the one place in their lives where they feel truly accepted by their peers, which allows them to form uniquely meaningful friendships and connections to others. When we first started the camp in 2008, our oldest campers were 16 years old – completing 9th grade. The following summer, we had so much demand for teenagers that we expanded the program to include boys and girls finishing 10th grade. We’ve found that camp has taken on even more significance in the lives of our campers as they move through adolescence and the world gets even more complicated socially.

It quickly became evident to us that we could do even more to help prepare these amazing kids for adulthood. Towards that end, we started a new program last summer, called Beyond Akeela. It’s for boys and girls finishing 11th and 12th grades and is essentially a hybrid of a traditional camp CIT program and a life-skills training experience. We had 18 participants in Beyond Akeela’s inaugural summer and it was a huge success. In addition to having an amazing summer at camp, they also came away with concrete skills and experience in the areas of job readiness, managing money, cooking & nutrition, college options and appropriate peer relationships. They toured colleges, attended cooking and banking classes, volunteered in a variety of community service efforts, organized and led in-camp activities, discussed relationships and sexuality, went shopping and did their own laundry, challenged themselves on outdoor adventure trips, and much more. The program culminated in a 4-day trip on which they put all their newfound skills to work while living independently (with staff supervision!) in condominiums.

Overall, it was a huge success and a program we look forward to offering for many years to come. Reading the New York Times article last week allowed us to reflect on and be thankful for the role we may play in helping a very deserving group of people find what we all seek in life: loving, fulfilling and reciprocal relationships with people who value and respect us.

— Eric

Sleep for Kids on the Autism Spectrum

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

Thoughts on Asperger’s on ‘Parenthood’ (and a Washington Post interview with its producer)

We absolutely love the NBC drama ‘Parenthood’, particularly for it’s portrayal of Max, a young teenager with Asperger’s. Max – with all of his endearing quirks, sharp wit, affinity for routines and social gaffes — reminds us so much of our campers at Camp Akeela. This is the population that we’ve dedicated our professional lives to, and that brings us so much joy, laughter and pride each summer. It’s been a lot of fun seeing Asperger’s emerge into the public’s consciousness over the last few years, in part due to ‘Parenthood’. When we describe the mission of Camp Akeela to people we meet, Max is often a point-of-reference for them.

The show has done a great job showing Max and his family in a realistic light. Yes, he can be really frustrating. He sometimes has what we call “meltdowns” and has had to work really hard to control certain behaviors that were getting him in trouble at school. He often puts his foot in his mouth, or worse, hurts the feelings of someone who loves him.

It’s clearly not always easy being a parent or sibling in Max’s home. But the overwhelming picture we get of Max is how sweet and smart and funny and loveable he is. This affectionate but unsentimental portrait of Max immediately convinced us that someone writing for the show knows what he/she is talking about. Indeed, executive producer Jason Katims has a son with Asperger’s Syndrome.

Here is a link to an interview Jason Katims did for the Washington Post blog, “On Parenting”.

If you don’t already watch the show, check it out!

Welcome to our blog!

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!