May 27, 2011


The waters were swirling around us threatening our vehicle.  We were adrift and the swift current took us further away from our familiar surroundings.  Ryder was in the back seat with the therapist while I tried to steer us to safety. 

 "I hate water".  I thought to myself.  "Why does it always have to be water?"

Suddenly the top of our vehicle blew off violently.  Ryder, my 7 year old boy with severe disabilities, fell into the turbulent waters.  The waters engulfed him and I could no longer see his red shirt.  I reached into the icy cold water after him.  I could feel him, but his body sunk deeper as I reached in. I said a quick prayer,
 "Heavenly Father, please help me!" 

 Immediately my hands  were cupped by God's giant, protective hands and together we lifted Ryder out of the swift current.  He wasn't breathing.  I quickly breathed into his mouth as I carried him to shore.  A rescue helicopter was waiting.  Ryder coughed and sputtered and came to, finally.  

When I woke from this nightmare, I was so glad that it was just that: a nightmare.  It left me feeling panicked and stressed but grateful at the same time.

I decided it was time to shake off that crazy nightmare and get ready for the day.  Halfway through my shower, I felt frustrated when I thought about the dream.  Why  didn't  I put Ryder down and administer CPR?  Being a former nurse, that is what I was trained to do. (Of course it's difficult to control your thought process while you are dreaming.) 

 I thought some more and suddenly it dawned on  me.  I was carrying Ryder, breathing life into him, while walking on the water trying to get to shore. 

 I need to have faith to get through these trials. Just as the Lord called out to Peter, to come unto Him, even though the wind was boisterous and the water deep. He would have to exercise faith over those turbulent waters until he reached his Savior. 

May 19, 2011

*The Differences Are Obvious*

I don't know where I found this, but I really liked it and wanted to share...

You have hobbies--I have peculiar special interests.

You need time to yourself--I am being anti-social.

You move on to better things--I run away from problems.

You love people--I develop dependencies.

You like things--I obsess on objects.

You insist--I tantrum.

You stand up for yourself--I am non-compliant.

You feel sad at times & happy at others--I am falsely diagnosed w/ a mood

You dislike being mistreated or disrespected--I am "overly sensitive" or

You persevere--I perseverate.

You ask people for help--I use people as a crutch.

You are unconventional--I am inappropriate.

You are a staff worker--I am a Spectrumite.

May 16, 2011

Summer Camp & Spectrum Kids: Let’s Create Fun!


 I meant to get this out sooner, but times are busy...(thanks Marla for your patience!)


Compliments of Autism Asperger’s Digest         March/April 2011 issue

Summer Camp & Spectrum Kids: Let’s Create Fun!

Excerpted from the article, “Going Off to Camp: Information and Encouragement for Parents” that appears in the March/April 2011 issue of Autism Asperger’s Digest magazine. Reprinted with permission. The Autism Asperger’s Digest is offering a subscription special during April, to celebrate National Autism Awareness Month. Details follow.

Spring has yet to arrive, so why are we talking about summer camp for kids with ASD? Because you’ll need plenty of time to find a camp and then prepare your child for this important experience. But also because camps are already accepting applications and time is running out.
Whether you’ve made the decision to send your child with autism or Asperger’s to summer camp, or you’re still unsure – possibly torn between pros, cons, or where to begin – this article will help you through the process. Four camp directors shared their expertise, several parents offered advice from their camp experience, and all that information is combined here to give you tips and information to ensure a successful camp experience.

Before You Begin…
Consider these tips from the parents and camp directors to get you started:
  • Know what you want; determine your goals. Many parents use summer camp primarily as an opportunity for their child to be away from home, socialize and build self-confidence. Others have a more specific goal, such as a therapeutic environment, academics, or a camp specializing in sports, arts, computers and other interests.
  • Perform an honest assessment. Decide whether you and your child are ready for camp. This step is just as – and sometimes more – difficult for parents. 
  • Gather information. If you’re having a hard time making a decision, finish reading this article, target a few camps you like and talk to the camp directors. This will give you a sense about whether that camp is a good fit and the directors will help you work through concerns to make a decision. 
  • Prepare a list of questions. Don’t count on remembering everything you want to ask the camp director. Make a very thorough list covering every concern. 

What to Look For in a Camp
You can count on this advice because it comes straight from experienced professionals managing camps for kids on the spectrum. Sylvia Van Meerton (Dragonfly Forest), Linda Tatsapaugh (Talisman Camps), Debbie Sasson (Camp Akeela), and Elsa Berndt (Camp Lakey Gap) generously offered some great information about what to look for in a summer camp. The parents added 100% agreement with these recommendations:

  1. Size of camp. Most camps specializing in ASD have fewer campers at each session, however you may also want to ask about size as it relates to how many campers bunk together or the number of kids in group activities.
  2. Ratio of campers to counselors. Special needs camps typically have ratios of 1:1 to 1:4 compared to regular camps that have 1:20+. Is there enough staff to allow individual attention to campers whenever necessary
  3. Accreditation. Is the camp accredited by the American Camp Association? This is a good indicator of overall quality.
  4. References. Will they put you in touch with another parent whose spectrum child has attended the camp?
  5. Application form. This should be extensive so parents provide comprehensive information. This allows staff to get to know the family and the child - what causes meltdowns, fears, when to give cues or warnings. It also builds parents’ confidence in the camp’s ability to manage their child.
  6. Staff training and background. How much autism-specific training is provided? By whom? This is a deal breaker because you must be confident that camp counselors understand autism and how to manage each child’s needs. At Camp Lakey Gap, counselors receive two weeks of training provided by experts from TEACCH and the Autism Society of America, and they interact with local special needs kids for experience.
  7. Communication. Are phone calls from parents welcome? Do staff members regularly call home? Can parents talk to their child? Some camps find that conversations between campers and parents seldom help homesickness; other camps leave it to the parents’ discretion. This is another reason why it’s important for parents to trust the camp staff. Also ask if they do anything to facilitate ongoing communication between campers throughout the year. Camp Akeela fosters a sense of community through newsletters containing updates about individual campers all year long.
  8. Homesickness. How do they deal with homesickness? At Talisman Camps, they encourage the children to write home, expressing how homesick they are. One mother said she was worried when she received a letter saying, “I hate camp. I’m 100% homesick.” But with each subsequent letter, her child’s rating of how homesick he was improved, creating a great visual tool for both parents and campers to see how well they were adjusting.
  9. Medical personnel. Who oversees medication management? Do they have a nurse available 24/7? What are their procedures in case of an emergency?
  10. Autism support. What specific supports do they provide? For example, at Dragonfly Forest, counselors use a whiteboard at each activity to prepare the kids by writing down the rules, what will happen, and what to say if they need a break. The counselors also carry a backpack with schedules, timers, paper/pen and a common high interest and/or soothing activity.
  11. Behavior management. How do they manage difficult behaviors? What happens when a child has a meltdown? Ask how they’ll deal with specific challenges faced by your child. When do they call parents?
  12. Daily schedule. What is a typical daily plan? Is it tailored for the child’s interests and needs? Is it flexible? Look for a structure that allows children to do activities at their own pace rather than being forced to keep up with the group.
  13. Breaks and downtime. How do they allow for breaks? Are they built into the schedule? Do they have a quiet place or sensory room? Are procedures in place to allow a child to opt-out of an activity when needed? Do they teach campers how to express the need to opt-out?
  14. Activities. Does the camp offer something your child will be interested in? Are there enough choices and different types of activities? In addition to summer activities like swimming and hiking, are there other less typical choices like cooking or wood shop?
  15. Special diets. Can the kitchen accommodate your child’s special dietary needs? Who will monitor the child’s diet if he can’t/doesn’t himself?
  16. Overall environment. This includes the physical and philosophical environment. Does the camp fit your child’s unique needs? What is their overall approach for dealing with autism?

Note: the article also includes sections on “How to Prepare for Camp” and “Anticipate the Unexpected.” Three additional strategy-packed articles are available to AADigest subscribers, in their Read More Online section of the website:
  1. Decisions! Decisions! Questions to Guide You in Making a Camp Choice.
    Many pieces of information must be collected and considered when you’re thinking about sending your child with autism/Asperger’s to camp. Let this printable list guide the process and help keep you organized!
  2. Stumbling Blocks: Special Considerations for Special Needs Campers
    Our Decisions! Decisions! list is a great cheat-sheet to print out and use as a guide. But some special considerations are likely to present a bigger stumbling block than others. We discuss distance to camp, dietary accommodations, neurotypical versus a special needs camp (with tips for each), and financial considerations (includes ideas for making camp happen no matter what the family’s financial status).
  3. Words of Wisdom: From Parents and a Sibling About the Camp Experience


Copyright © Autism Asperger’s Digest. 2011. All Rights Reserved.
Distribution via print or electronic means prohibited without written permission of publisher.



Ernie and Oscar learn they like different things-great for kids on the Spectrum!