Asperger’s Syndrome: help for sleepless kids with special needs

Help Sleepless kids Special Needs

Besides being a camp director, I also have my doctorate in Clinical Psychology.  During my studies in NY, I became interested in in the study of sleep and later became a Certified Sleep Consultant.  Helping families get the rest they need is extremely fulfilling and so important.  As I began to work more and more with children with special needs – mostly those with Aspergers, ASD, ADD and ADHD, I learned that these kids have a greater incidence of insomnia.  Every summer at camp, I’m reminded of HOW MUCH SLEEP our campers need.  I tell my sleep colleagues that we’re likely the only residential summer camp in New England (or in the country!) that is quiet by 10:15pm!

When I teach other sleep consultants about working with “quirky kids”, I am very clear that although they seem to have a greater sleep need, they still benefit from all of the tools we use when we work with our other clients.  Most importantly, all of us (including parents) need to have a very consistent sleep routine and we need to get to bed early enough to allow our bodies to get the sleep we need.  We should wake up and rise at the same times every day – regardless of weekends!  (This allows our natural body clocks, to be well established and in tune with the natural light cycles of our seasons.)

Here are some important tips for parents:

Help Sleepless kids Special Needs
  • Many of our campers have a great deal of Anxiety and need extra time to settle down – make sure that’s built into their schedule!
  • Anxious kids benefit from help in “turning off” their busy minds – in order to help them do this, I love using guided meditations. The free app, Insight Timer, is wonderful and allows you to search for kid-friendly bedtime meditations for as short or as long as you’d like. (Good luck staying awake if you’re listening with your child!)
  • Medications prescribed for ADHD and some other meds can interfere with the TIMING of sleep. It is very important to discuss sleep troubles with the prescribing physician to see if the time of administration or dosage needs to be adjusted later in the day to allow for an early enough bedtime.
  • Our campers tend to be quite sedentary during the school year. Reading books and playing video games does not allow for children to get the exercise they need to expel all of their energy.  Get them moving!  Even just a walk around the block, a period of bouncing on a yoga ball, or some jumping jacks at least an hour before bed (best if it’s done throughout the day if possible).
  • Get outside! Natural light really has an impact on our sleep cycles.  When possible – even if you have to bundle up or grab an umbrella – get some natural light.
  • Finally, turn off the screens. By now, most people know that blue light and sleep don’t mix.  Don’t use devices for self-soothing at bedtime.  Read a “real” book, listen to soft music or a podcast, or a meditation!  Yoga Nidra is wonderful for children who need something more physical to help relax but please – don’t turn on your devices!

Akeela Wisconsin Winter Newsletter

The latest Camp Akeela (WI) newsletter, the Akeela Circular, is here!

In this edition:

  • A letter from Dave and Katie, looking back on the foundation of Camp Akeela in Wisconsin and how much its grown since this time last year! Also, touching on some highlights from our camper reunion.
  • A checklist to help campers and parents prepare for camp, starting with some advice for this winter and taking you right through the weeks leading up to your arrival at camp.
  • A sneak peek into some of our new programming and optional off-campus trips we are offering this summer.
  • Information for parents about the ways we partner with them throughout the summer. We also share details about what to expect from our end-of-summer camper reports.
  • Introductions to some of our fantastic members of the senior staff. Check out their photos and bios, including their favorite camp food!
  • Lists of upcoming camper and staff birthdays, as well as which campers are coming back!
  • A can’t-miss profile of an impressive Akeela alumnus, Nolan D. He catches us up on what he’s been doing since his camper days, including his passion for working in the video game industry.

 

Read the newsletter here!

Wisconsin Camp Winter Newsletter


Akeela Vermont Winter Newsletter

The latest Camp Akeela (VT) newsletter, the Akeela Circular, is here!

In this edition:

  • A letter from Debbie and Eric, looking back on the Winter Weekend camper reunion and looking forward to our upcoming alumni reunion in honor of 10 years of Akeela!
  • A checklist to help campers and parents prepare for camp, starting with some advice for this winter and taking you right through the weeks leading up to your arrival at camp.
  • A little teaser about some exciting new programming we’re introducing this summer for our oldest campers. 9th and 10th grade teens have some great stuff to look forward to!
  • Kevin’s look back at another fantastic Winter Weekend, which was attended by 53 campers and 18 staff members.
  • Information for parents about the ways we partner with them throughout the summer. We also share details about what to expect from our end-of-summer camper reports.
  • Another Akeela wedding! David Leach and Amanda Perry tied the knot in Manchester, England earlier this winter.
  • Introductions to our incredible team of head counselors. Check out their photos and bios, including their favorite camp food!
  • Lists of upcoming birthdays, returning campers and returning staff.
  • The first edition of “Greg’s Gab”, which introduces our newest year-round staff member, Greg Walker. Greg, of course, isn’t new to Akeela – he’s been a camper favorite since arriving in the summer of 2012!
  • A can’t-miss profile of an impressive Akeela alumnus, Nolan D. He catches us up on what he’s been doing since his camper days, including his passion for working in the video game industry.

 

Read the newsletter here!

Family Camp Vermont Winter Newsletter


Autism Spectrum Disorders

Autism Spectrum Disorders and Mental Health Diagnoses

NPR published an article this week about the prevalence of Mental Health diagnoses in those with an Autism diagnosis (http://www.npr.org/sections/health-shots/2017/10/01/554461501/many-young-adults-with-autism-also-have-mental-health-issues).  While it is not shocking to read that many young adults who have a diagnosis of ASD also have a co-morbid (additional) mental health diagnosis, I was somewhat surprised to read that youth on the spectrum are more than FIVE times likely to have an additional diagnosis such as depression, anxiety or ADHD.  (The article states that the study they are referencing found that 52% of young adults with Autism also have a mental health diagnosis.)

The author quotes a young man on the spectrum who states, “Relationships are so much harder” for those on the spectrum and living in a world that is often fast-paced and filled with nuanced communication can often feel very lonely.  We hear this from our own campers all the time.  Depression and anxiety often stem from feeling disconnected and different.  When our campers live in a world that doesn’t feel like it “fits”, they often feel “less than”, lowering self-esteem and pride.  We feel lucky to be a part of a community that enables our campers (and staff) to feel like they are part of something bigger than themselves, a community where they feel like they belong and aren’t alone.  We witness a great sense of relief in our campers during the summer because they are less anxious and happier being surrounded by friends.

The article also points out how difficult periods of transition are for youth with an ASD diagnosis.  The author writes:

“Transition for youth with autism is a very challenging process,” Davidson says. “It is doable, but it takes a lot of preparation and a lot of time on the part of the families, on the part of the patient and on the part of the providers. The earlier one starts, the better.”

“Research literature suggests that it’s good to start learning daily living skills, such as laundry, cooking, bathing alone and similar chores, around 12 to 14 years old, Davidson says. But she believes that should start as early as possible, depending on a child’s intellectual, social and mental health disabilities.”

“Youth on the autism spectrum may need repetitive modeling and experiences so that they get those skills down and become as independent as possible,” Davidson says. Too many families, she says, do tasks for their adolescents long past when the teen could do them on their own. Other youth continue to need support for what might seem like basic tasks, so parents and care providers have to work to learn the boundaries and abilities for each person on the spectrum.”

Autism Spectrum DisordersOf course, we know that sleep-away summer camps in general, and Camp Akeela in particular, provide precisely the opportunities for independence that this article suggests are necessary.  Being away from home in a safe environment, like camp, allows campers to practice the skills necessary for them to be successful later on in their young adulthood.


Holidays – Autism Spectrum

Is It Really “The Most Wonderful Time of the Year?”

Eric and I took our girls to see the “holiday spectacular” at the Comcast Center here in Philadelphia. It’s a really neat film that they project onto an enormous LED screen. The 15-minute show ends with a sing-a-long of “It’s the Most Wonderful Time of the Year”. As we were walking away, Eric turned to me and asked, “Is it”? For many families, the holidays are not easy. In fact, they are the most STRESSFUL times of the year! Holidays can sometimes mean arguments with family members who are impatient or “stuck” in traditions that don’t work for every person in the family. It can mean sitting and waiting in airports or train stations and experiencing what even the most patient and “zen” person finds unbearable – changes in plans and being out of control. Sitting at long meals where conversations may be boring to some or insulting to others. Many of us experience these struggles but for families that include individuals on the Autism Spectrum or who struggle socially or who have NLD, these are even more difficult.

While we hope your holidays are filled with lots of yummy food, quiet and relaxing time with family and friends and reflection of the many gifts in your life, we know that may not always be possible. Here are some suggestions for how to increase the likelihood that everyone is set up for more success:

• Preview any schedule changes in advance (at least a few days) and give the members of your family a printed schedule/itinerary….with the warning that sometimes things like traffic or weather force us to change plans.

• Try to stick to your normal routine as much as possible leading up to the holiday. For example, even when school is closed for a few days or weeks, try to keep wake-up, bed-time, and meal-times as close to schedule as possible.

• Maintain normal school-week expectations when possible as well. (e.g.: limiting screen time, household responsibilities….etc.)

• Make sure your child will find something familiar to eat at the holiday meal so that he knows he is valued and won’t be hungry. (This may mean bringing along a container of his favorite food.)

• Bring along a favorite game so that your child can invite other family members/friends to join in activity she feels confident playing.

• Bring along an activity your child can do in solitude in case he needs some down time or just wants some time away from the larger crowd.

• Take some deep breaths, listen to music – do whatever makes you feel calm and at your best and try to be ok when things don’t turn out as planned….they never do!

Happy Holidays and Happy New Year!
-Debbie


Autism Spectrum Camp Staff: Part 1

Autism Spectrum Camp Directors:

When we tell people that we’re summer camp directors, one of the most common responses is to ask us, “What do you do the rest of the year?” They often have a hard time believing that our 7-week summer camp translates into a more-than-full-time job for 5 of us! Blayne and his team work at camp to maintain and upgrade our beautiful camp facilities. Each year, he has at least one large construction project (e.g. new camper cabins, the Lodge, the camp office) and a variety of smaller maintenance tasks that keep them very busy!

Meanwhile, Debbie, Eric, Kevin and Dave work in an office just outside Philadelphia. Together, we make sure that every summer at Akeela is the best it can be. That includes hiring the most incredible summer camp staff in the country – no small task given the size of our staff (over 100) and our extremely high standards (many inquiries and interviews for each available position). We also work hard to ensure that every camper who attends Akeela is a great fit. To that end, we spend many hours getting to know all prospective campers and their families, including speaking with three non family members for each applicant. Of course, there is also a lot of planning that goes into the camp program, from the traditional camp activities to trips and special events. This year, program planning is even more intense as we’re launching Camp Akeela in Wisconsin and totally revamping Beyond Akeela!

Another large component of our off-season time is dedicated to professional development. Camp directors are first and foremost educators and child development specialists. We’re also HR directors, supervisors and leaders who get to train and inspire staff members to profoundly change lives of the children. Moreover, we manage complex operations on large properties with food service, water supplies, environmental responsibilities and a host of other factors. The more we learn and share in these areas, the better we can be at delivering our mission: to provide our campers with the most incredible, life-changing summer experience on the planet. For that reason, all of us are actively engaged in attending, volunteering and even presenting at educational conferences organized by the American Camp Association (ACA).
In addition to our involvement in the ACA, we are very fortunate to work closely with approximately fifteen other sets of camp directors. Most of these camps are in the Northeast: Maine, New Hampshire, Vermont, Massachusetts and New York. A few are in the Midwest: Camp Akeela in Wisconsin and Lake of the Woods and Greenwoods Camps in Michigan. Together, we make up a family of camps called CampGroup. As an organization, we share core values of human development, excellence, building community and industry leadership. That manifests in a number of ways, including regular gatherings to support each others’ camps and share best practices.

Be sure to check back next week for part 2


Aspergers and Technology

Utilizing Modern Technology to Improve Self-Awareness and Self-Advocacy

I recently had the pleasure of attending a conference at Adelphi University on Long Island at which world renown clinical psychologist and Aspergers expert Dr. Tony Attwood presented on the topic of emotional regulation in children and early adolescents. Dr. Attwood covered a variety of topics from the psychological reaction to “being different” to having and dealing with various levels of anxiety.

Being a millennial who gets entranced by the all of the latest technology (have you seen the trailer for the Nintendo Switch?! It’s amazing! Check it out here: https://www.youtube.com/watch?v=f5uik5fgIaI), the topic that he discussed that caught my eye the most was the use of modern technologies to help children more easily recognize when they feel upset.
The Fitbit is an amazing tool that can not only help children and adults keep track of their health, such as how many steps they are taking or calories they are burning in a day, but newer Fitbits and other “smart watches” also have built in heartrate monitors that are amazingly useful towards improving self-awareness. For many of our campers, it is difficult for them to tell when they are getting upset, and incidents usually come about without much warning. One of the first and most basic warning signs of someone getting upset is the increase in heartrate, and with a piece of technological assistance like this one, children can check their heartrate right on their wrist to see if it is higher than it normally should be. This may indicate that they are beginning to feel upset, and they can advocate for themselves that they proactively need time to cool down. After some time, children may be able to recognize other warning signs their body is giving them that are paired with the increased heartrate – increased muscle tension, hot feeling in the neck or face, clenching of the jaw, etc. – and this feeling could become more recognizable and in turn easier to prevent.
For parents, one of the benefits of this technology is that it often comes with a smartphone app that tracks the data. If a child’s Fitbit is linked to a parent’s smartphone, the parent can monitor what times of day they see a drastic spike in heartrate. If a child’s heartrate continuously spikes around noon, it is likely that the child has some anxiety about the lunch room, or if the heartrate spikes during third period math class, that child might have some underlying issue with math that they cannot or have not yet verbalized to a parent. There is a classic scenario of a parent asking their child how their day at school went, only to get the blunt response of, “It was good.” By using this technology parents may be able to be more attune to difficulties at school which will in turn make the child’s school experience more positive.

Dr. Attwood has been the keynote speaker at events around the world and he has authored or co-authored multiple books and articles about Aspergers. Visit http://www.tonyattwood.com.au/ for more information.


Upcoming Conferences

Our assistant director, Kevin Trimble, will be representing Camp Akeela at these two upcoming conferences:

On October 25, in Boston, is AANE’s Asperger Syndrome Connections 2014. This year’s conference, titled “Practical Perspectives, Positive Lives” features speakers Simon Baron-Cohen, Winnie Dunn and Michael Forbes Wilcox.

On November 2, Kevin will be attending the ASPEN Fall Conference in Iselin, New Jersey. After morning presentations from Alex Plank (speaking on autism and the media) and Dennis Debbaudt (ASD and independence), seven afternoon sessions will address topics from dating and relationships to psychopharmacology.

If you’re planning to attend either of these conferences, make sure to stop by the Camp Akeela table to say hello to Kevin. If you weren’t planning to attend, we encourage you to take a look a these two excellent organizations: AANE and ASPEN.


Empathy

A mom from Akeela Family Camp recently posted a research study about individuals with Asperger’s Syndrome and empathy. (The 2009 study by Henry and Kamila Markram of the Swiss Federal Institute of Technology in Lausanne is referenced here, here and elsewhere). While the research is a few years old, we believe it is extremely relevant.

We have always said that the notion that our campers (and those like them) lack empathy is absolutely bogus. We have seen time and time again that our campers are extremely caring individuals who are capable of understanding the emotions of others and showing them compassion. There are times at camp when we believe that a typically developing child would not be as insightful in an emotional moment as our children are. We had a 11-year-old camper this past summer who made it his goal to help support all of the campers he met who were feeling homesick. There were many times when we would see this boy with his arm around a peer and overhear him saying something like, “It’s OK to feel sad; I felt sad my first summer too”.

Our experience is reflective of the Markrams’ research conclusions: that those with ASD are actually hypersensitive to the emotional experiences of those around them. That “over-experiencing” of others’ emotions can be very overwhelming and can create the individual to shut down or escape into their own world.

We believe it is imperative that we not assume how others experience the world. We’ve often told parents that our kids work harder than most performing everyday tasks; it’s as if they are trying to interact with environmental stimuli while simultaneously performing long division at hearing background static. It’s hard to do so many things at once. When our campers “shut down” or retreat into themselves for a few minutes, we don’t assume they are disinterested. Instead, we suspect they are taking a moment to organize their experience. Although our campers do not always know how to express themselves in the exact ways that society expects, they deserve to be recognized as people filled with genuine feelings, rich emotional lives and yes, empathy.

– Debbie and Eric


John Elder Robison, Autism Speaks and the Akeela Community

John Elder Robison made some waves this week when he publicly resigned from his position on the Science and Treatment Board of Autism Speaks.  (See his blog about this decision and his letter of resignation here: http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html.)  After reading this, I had many thoughts about our campers and our community.

I can only imagine what it feels like to be labeled as “disabled”.  In our six summers running Akeela, I have learned that our campers are extremely “abled” and have many talents to celebrate.  Do our campers (and their families) struggle?  Are there difficult moments, days, weeks, years?  Are there challenges that seem small and others that are life-altering and terrible scary?  Yes – of course.  However, in order for our campers to reach their enormous potential, they must be shown that they are capable of achieving their goals.

What has been most profound for me, as a director at Camp Akeela, has been watching how powerful a community can be.  Our campers, who are often left on the outside (by individual peers, by society at large, or by institutions that liken them to the “gravely ill”) thrive when they are part of a community – when they truly feel accepted and valued for who they are.  I wish that more people could see our campers at Akeela so that they could witness their successes.  Of course I support organizations that help advance science and look towards treatments that can help make the lives of those living with autism easier/better/happier.  I just wish those same organizations were also honoring and supporting the communities which celebrate the same individuals.

I want to honor JER’s leadership as he champions the rights of the ASD community.  He is certainly an example of the amazing contributions those on the spectrum make to our larger world community.

– Debbie