Day Camp Promotes Acceptance

I love this story... It hurts my heart but makes me smile all at the same time.

For five days, 20 children, some with disabilities and some without, will learn about one another.

By Kristin E. Holmes

Inquirer Staff Writer

Five days. Teddy Willis and Tyler Voelker are hoping they make all the difference.
When their weeklong day camp starts next week, it won't be just a place for summer fun. The five days, called the ETS Experience, are a time when campers such as Willis and Voelker hope to find the thing that often eludes them: acceptance.

Willis and Voelker have Asperger's syndrome, a form of autism. Their struggle with social interaction is the Goliath that the ETS Experience is tackling for the first time.

The free five-day camp in Wrightstown was the idea of Teddy Willis and his mother, Irene. The ETS Experience (ETS stands for Everyone's The Same) is not just for students with Asperger's syndrome. It's also for students without Asperger's.

"The main reason for the camp is so that all kids would learn not to treat people differently," said Teddy Willis, 11, of Newtown.

In Willis' case - as is the case with other youngsters with Asperger's syndrome - "differently" often means being teased and ostracized. ETS Experience will offer a weeklong program for fifth and sixth graders with a goal of fostering understanding, Irene Willis said.

The camp will be held at the Delaware Valley Children's Center, a mental health agency in Wrightstown and the camp's sponsor. Conventional day-camp fun and games will be interspersed with exercises and interactions designed to enhance disability awareness.

Asperger's syndrome is a less severe form of autism, a developmental disability characterized by difficulty with communication, social interaction and behavior. A 2007 study by the Centers for Disease Control and Prevention found that one in 150 8-year-olds in the 14 U.S. communities included in their research had some form of autism.

"One of the things we know is that while these children really need staff and treatment, and programming that is specific and appropriate to them, they benefit tremendously from being around typical children, because most of these children [with Asperger's] are very bright and capable," said Kerey Ruggiero, executive director of the Children's Center. Both groups of youngsters will benefit, she said.

While most camps for children with autism are inclusive, their numbers are few, said Marguerite Krist Colston, spokesperson for the Autism Society of America. "The kids go to school and get services, and the summer starts and there is nothing to do," Colston said.

The Children's Center is developing an Asperger's program that will tentatively launch in the fall, and there are hopes that the inaugural session of ETS will lead to a two-week overnight camp next summer.

So far, ETS is nearly a sold-out experience. Nearly all the spaces in the camp for 20 were taken as of last week. The daily sessions are from 9 a.m. to 3 p.m. The camp will include games, eco-friendly activities, movies, arts and crafts, and peace-oriented exercises provided by the Peace Center in Langhorne.

Beth Voelker's hopes for her son Tyler's ETS experience are simple: "I'm hoping that he will walk away with a friend."

The camp is the culmination of a year-long coming out for Teddy Willis, who began talking about his autism in classes this year at Goodnoe Elementary School in Newtown. After that, a classmate's parent invited Willis to come to a birthday party.

"Teddy said, 'Maybe we should tell more people I have autism. Maybe they'll understand me better,' " Irene Willis said.

Teddy Willis made other attempts to talk about Asperger's, but was discouraged by school officials because of privacy issues, Irene Willis said. Undeterred, Teddy Willis and his family decided that if they couldn't do it at school, they would do it at a school board meeting. Teddy Willis made a four-paragraph speech.

"I would like more people to understand my disability," Teddy Willis said before the school board. "If they did that, then I wouldn't be the least popular kid at Goodnoe and I would be like everybody else."

Meg Townsend's son Riley, who has Asperger's, will be one of the students sitting alongside Voelker and Willis next week. Meg Townsend works in autistic support services with the Bucks County Intermediate Unit, and had previously investigated camping activities for her son. One cost $5,000 for two weeks.

When Townsend heard about ETS, she jumped at the opportunity not only because the camp was free, but also because she wanted her son in a camp that wasn't just for students with Asperger's. She is now the camp's codirector and is helping plan activities for campers such as Tyler Voelker, who can't wait for the experience.

"I think it's cool because it will be kids who have the same thing that I have," said Tyler Voelker, 10, "and the other kids that don't have it can learn about it."

Anticipatory Anxiety

My son's IEP is in just under 90 minutes. The anticipatory anxiety I am feeling is almost overwhelming. I just took a xanax (rarely have a need for those anymore!) and am hoping that my heart will stop pounding and my hands will stop shaking soon.

Things shouldn't be this hard.

I hate feeling like I have to "prove" to these teachers that my son does not deserve to be classified as a "bad child" or a "behavior problem" simply because he's Autistic. I am not one of those parents who is blind or oblivious to the faults and/or weaknesses of her child. I'm totally - PAINFULLY - aware of the areas in which he struggles. He is a good kid, though - he loves school and enjoys learning and he is entitled to benefit from a regular-ed classroom with teachers who are supportive, tolerant and patient. I hope that their attitude towards him is just because they aren't knowledgeable about Autism spectrum disorders and that, once they learn a little about kids like my son, they will open their minds a bit and be more understanding and accepting. If they are not, however, I hope that the principal will work with me to find a more appropriate classroom for him. He deserves to be viewed by his teachers as an asset to his class - not as a burden. (Thank you, Kerry, for so effectively putting that into words for me!)

Orlando Pictures

The Darkest Day

Never forget.

Patience. Patience. Patience.

My son (who, for those readers who don't know, is Autistic and mainstreamed into regular-ed) has been in 2nd grade now for almost 3 weeks. He is doing well - the transition from Summer vacation to school has been easier this year than it's been in years prior. I have learned that his new teachers, unfortunately, are apparently having some issues with the presence of a "special needs" child in their classroom.

I guess I've been fortunate until now - his Kindergarten and 1st grade teachers were amazingly communicative and helpful and as determined as I was to make sure he had a good year with them - which he definitely did.

I requested yesterday that both of his teachers be present at an IEP meeting (which must be held, by state law, within 10 days of the date of my letter) as well as his speech pathologist, the school psychologist and his previous teachers. I am hoping that these women are just not knowledgeable about children like him and that once they're made aware of what an Autistic child is/isn't and what an Autistic child can/can't do - and given tips and strategies for teaching such a child - that they will be more accepting of him and we will be able to have a successful school-year.

I found something today, written by Ellen Notbohm, that I think I may copy and bring to the IEP - it's simple, but has good information and, I think, is a must-read for any teacher who has a child with Autism in his/her class.

Here are ten things every child with autism wishes you knew:

1. I am first and foremost a child. I have Autism. I am not primarily "Autistic." My Autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.

As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don't think I "can do it," my natural response will be: Why try?

2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a "simple" trip to the grocery store may be hell for me:

My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today's special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input and I'm in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on aisle 3 with ammonia. I can't sort it all out. I am dangerously nauseated.

Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There's glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can't even tell where my body is in space.

3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to).

Receptive and expressive language and vocabulary can be major challenges for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$@, Billy. $%^*&^%$&* ??â€--"? ??â€--"? ??â€--"?" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

4. I am a concrete thinker. This means I interpret language very literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is "this will be easy for you to do." When you say "It's pouring cats and dogs," I see pets coming out of a pitcher. Please just tell me "It's raining very hard."

Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

5. Please be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.

Or, there's a flip side to this: I may sound like a "little professor" or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called "echolalia." I don't necessarily understand the context or the terminology I'm using. I just know that it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.

A visual schedule is extremely helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations. Here's a great website for learning more about visual schedules: www.cesa7.k12.wi.us/sped/autism/structure/str11.htm .

I won't lose the need for a visual schedule as I get older, but my "level of representation" may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.

7. Please focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough and that I need "fixing." Trying anything new when I am almost sure to be met with criticism, however "constructive," becomes something to be avoided. Look for my strengths and you will find them. There is more than one "right" way to do most things.

8. Please help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I'm delighted to be included.

I do best in structured play activities that have a clear beginning and end. I don't know how to "read" facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it's not that I think it's funny. It's that I don't know the proper response. Teach me to say "Are you OK?"

9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.

Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.

Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.

10. If you are a family member, please love me unconditionally. Banish thoughts like, "If he would just...." and "Why can't she...." You did not fulfill every last expectation your parents had for you and you wouldn't like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you -- I am worth it.

And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me.

Mystery Shopper

I'm so excited! I've been hired to be a mystery shopper and I have my first assignment tomorrow! The jobs don't pay much - usually from $5-$30 plus reimbursement for what is purchased (up to a certain amount) - but it should be fun. Lord knows I love to shop! I am good with details (you should see the forms that need to be filled out afterwards!) - I like to write and am always appreciative of good customer service - sounds like a perfect job for me, right?