Kris’ Camp

Philosophy

Kris’ Camp’s therapeutic philosophy has evolved from the professional experience of some of the core therapists in combination with the founder’s goals and direction in starting Kris’ Camp. We do not adhere to one particular school of thought related to treatment, but utilize a positive approach based on several empirical findings and theories. We look at autism as a cognitive motor/sensory processing disorder.  Cognitive motor: the inability to initiate, sustain, inhibit, or transition movement efficiently. Sensory processing:  some brain pathways are strong for persons with autism, while others are less efficiently connected.  We have found that when our clients are provided with sensory supports that take advantage of well connected brain pathways, they are able to regulate and modulate their motor output more effectively and thus able to demonstrate more of their true potential. We look at behaviors as communication and assess whether or not an individual’s self-initiated seeking of sensory input is an effective means of system organization. If not, we assist the individual in identifying a more appropriate accommodation for their daily life. Our approach is a positive, competency-based one in which we provide the least amount of assistance possible to promote the child’s independence and rely on their strengths to promote future successes. Within this framework, we encourage the parents to lead us in the treatment direction through their written/verbal input. Their goals and input then become our focus for treatment during the week.

Over the twenty-one years that we have run our program, our techniques have evolved as we have learned from new research and others’ clinical experience. Our approach is detailed further below. Attachments include a thesis on skilled movements in autism with reviews of current literature on neuroanatomical differences in the autism brain and recent research on clinical motor findings in autism.

The idea that autism is a movement disorder has been historically controversial, possibly because the movement difficulties are more cognitive in nature than what would typically be thought of when describing a movement disorder. The best description of the movement disorder seen in autism is a disorder of praxis. Praxis is the ability to learn and perform a skilled movement. While many children with autism can learn a particular motor skill, the ability to generalize this can be limited, and the child can find himself ‘stuck’ in this pattern.

Regarding praxis, it is important to realize that while praxis is the ability to learn how to button your shirt, it is much more complicated than that. Praxis also encompasses the ability to recognize and pretend to do a certain movement and to sequence movements together. Any time emotion or fatigue is added to a situation, this can compound the difficulty.

In the last few years several studies have documented praxis difficulties in children with autism, and these difficulties are greater the more severe an individuals autism score from diagnostic tests. For a more detailed review with references see Chapter 2 of Skilled Movement in Autism thesis or http://journal.frontiersin.org/researchtopic/801/autism-the-movement-perspective. Many of the supports we use attempt to address underlying praxis deficits. Imaging and autopsy studies have also evidenced different connective patterns in applicable regions in the autism brain. An autobiographical account illustrates this difficulty in a person with autism: in a Time magazine article, 2006, an autistic writer wrote:

“[The] knack of knowing where my body is does not come easy for me. Interestingly I do not know if I am sitting or standing. I am not aware of my body unless it is touching something… Your hand on mine lets me know where my hand is. Jarring my legs by walking tells me I am alive.” – Chandima Rajapatirana quoted in “New Insights into the hidden world of autism” by Claudia Wallis, May 15, 2006.

Treatment Components
•                Positive Approach/Empowering the child
•                Understanding Autism as a Movement Regulation Disorder – Least to Most Strategy
•                Sensory/Motor Integration
•                Neurologic Music Therapy (NMT)
•                Competency-Based Communication
•                Augmentative Communication/Pointing Methods
•                Provision of Family and Therapist Support– back to top   Positive Approach/Empowering the Child

When we are talking to and working with the children we always assume competence. We assume that they understand us and we treat them with respect. While we incorporate supports that are similar to applied behavior techniques, we stay away from describing behavior as avoidance or attention seeking behavior, e.g., and instead consider behavior from an internal perspective, based on brain connectivity studies and autobiographical accounts. We then address the supports that can help the child succeed and ‘flip’ a negative cycle into a positive one. This approach is based on the large body of research initiated by the ‘Rosenthal effect’ where if a teacher believes a student is gifted, they tend to do better, regardless of how the student placed on an exam. This effect goes both ways. If a teacher is led to believe a child is a ‘problem’ child, or less able, the child does worse. This is compounded for the child with autism who is not be processing the world, as a child with typical neural connections would. 

We use supportive language to recognize and validate each child’s difficulties while promoting responsibility for self and others. Self-talk language is also used to facilitate interactions with others, engage in daily living tasks, and increase awareness of self in relationship to his environment.  Two resources to get a better sense of a positive, respectful approach are a 2011 documentary Wretches and Jabberers, and a video compilation of a young man with autism, Dov Shestack. This video clip can be found at www.strangeson.com. – back to topUnderstanding Autism as a Movement Regulation Disorder -
Least to Most Strategy

Many recent studies have evidenced cognitive motor and motor learning differences in persons with autism. For example:
Autism and movement

Additionally, one of the most common neuroanatomical findings in autism is a decreased number of Purkinje cells in the cerebellum, and in children more severely affected with autism, an area in the cerebellum that connects to the premotor cortex is smaller, and motor maps, as seen on functional neuroimaging scans, are different and more diffuse in the autism brain. See neuroanatomical review, Chapter 1 thesis

Based on these motor findings, information and personal experience provided by individuals with autism such as Donna Williams and Temple Grandin, and clinical experience, Kris’ Camp staff look at these difficulties and provide accommodations necessary to promote independence including sensory-motor integration techniques, neurologic music therapy interventions, motivating factors, and self-responsibility.

When considering autism as a movement disorder, we utilize the least to most strategy with all interventions. This aspect of treatment allows the person the least amount of support needed for him or her to be successful in all presented tasks, including motor output and communication. It promotes the person’s independence while also facilitating success in a given experience, which then enhances his or her self-esteem.

Specifically we use a technique called “facilitated touch” to help with regulation of perceptual motor responses. This is the provision of light touch at the shoulder, triceps, elbow, forearm, wrist, or hand to promote initiation/inhibition of movement and/or sustained duration of motor output. Facilitated touch is not the directing of movement, but rather a touch cue to accommodate for one’s inability to initiate, sustain, or inhibit movement, i.e. regulate and modulate motor output. This external cue brings awareness to the part of the body necessary in performing a task and is provided only until an internal cue is developed. This accommodation is started at the shoulder for the least intrusive assistance and moved down the arm as needed by the individual.  A recent study examining motor learning in people with autism indicates that people with autism rely more heavily on the internal sense of proprioception to learn a new movement, possibly due to smaller ‘U-shaped’ neurons that connect this sense to the primary motor cortex (Haswell et al. 2009)

This type of cue, while often utilized in motor tasks, is also important in allowing a person with autism to effectively communicate their intentions. (Please see Competency-Based Communication section.) – back to top   Sensory/Motor Integration

Sensory Integration theory was developed by Jean Ayres PhD OTR, and attempted to explain mild to moderate problems in learning and behavior, especially problems in motor discoordination and sensory modulation, that could not otherwise be attributed to central nervous system insult.  (Bundy, Lane and Murray 2002)

Sensory Integration theory was not developed with autism specifically in mind, though many children with autism are thought to have sensory processing difficulties (Baranek et al., 2006).  Further research investigating sensory integration techniques and autism is needed, but the evidence that is available indicates that deep pressure and vigorous exercise can help decrease anxiety and seeking of movement or motor repetitive behaviors (Edelson et al., 1999; Baranek 2002).  There has also been a recent study evidencing improvement with an intensive sensory program (Schaff et al, 2014) Based on these studies, known mechanisms of neural plasticity as well as clinical and neuroanatomic findings in the autism brain, we use a variety of techniques that incorporate and build on traditional sensory integration techniques to promote improved brain mapping and arousal levels and decreased anxiety levels with the ultimate goal of improving the child’s ability to self- regulate and engage in relationships.

It has been theorized that disturbances in sensory modulation are the primary symptoms of autism and that disturbances of social relating, communication and language are consequences of difficulty in modulation of sensory input. A well-known example of the use of sensory input to improve regulation of behavioral symptoms is Temple Grandin’s use of deep pressure with her squeeze machine (www.hbo.com/movies/temple-grandin/index.html). In the past several years, neuroimaging studies have indicated that neural connections in people with autism is different and that some neural pathways are under-connected, while other neural pathways are over-connected than is typically seen. As mentioned above, one example of this is small U-shaped neurons that connect the primary sensory area with the primary motor area. These connections transmit deep pressure or proprioceptive information and in children with autism, there is evidence that these connections are much stronger while other areas that connect to motor areas are weaker. While traditional sensory integration attempts to integrate at least two senses with an adaptive motor output, we also use sensory input in an attempt to help the child ‘feel’ their body through the proprioceptive sense and then produce motor output through meaningful activity.

At camp the whole team works together led by the sensory motor therapist (OT/PT) to provide a variety of interventions and activities designed to help the children integrate their systems more efficiently. As the week progresses individual needs are assessed for each child, and the team discusses approaches for each child every day after therapy. Useful approaches are then utilized the following day in therapy by the entire team for consistency, followed by further discussion of its effectiveness within staff meetings. As children with autism are adept at providing their bodies with self-initiated accommodations to provide sensory stimulation, therapists at camp work to replace any inappropriate seeking of stimuli with more functional and effective accommodations. Many techniques are utilized to provide system organization to the children and often include vestibular, proprioceptive, tactile, and/or rhythmic input.
– back to top   Neurologic Music Therapy (NMT)

Kris’ Camp music therapists involve each child in a variety of vocal and instrumental music therapy interventions which facilitate demonstration of current cognitive, communication, motor, and social skill abilities. Music experiences provide opportunities for creativity and choice making, encourage independence and problem solving, promote self-confidence, and facilitate awareness of responsibility to self and others.  Specifically, these therapists incorporate Neurologic Music Therapy techniques that identify the physiological effects of rhythm to entrain motor responses (stabilization, timing, and adaptation of movement) as well as promote organization of the sensory and motor systems. Through the application of rhythm, and its corresponding impact on these systems, these therapists engage individuals in experiences that facilitate functional output and allow for increased affective/emotional responses. Structured improvisation presented at an individual’s internal cadence is also used while incorporating elements of self-talk to encourage awareness of the experience as well as self-responsibility for one’s actions.  NMT is defined as the therapeutic application of music to cognitive, sensory, and motor dysfunctions due to neurologic disease of the human nervous system. It is based on a neuroscience model of music perception and production and the influence of music on nonmusical brain and behavior functions. Treatment techniques are research based and directed towards functional therapeutic goals. (Thaut, 1999). For more information about NMT, please visit: Center for Biomedical Research at Colorado State University

– back to topCompetency-Based Communication

Persons with autism typically exhibit difficulty communicating their wants, needs, and intentions. We believe that it is important to provide whole language communication methods that allow for demonstration of the child’s current level of functioning as well as enhance their functional communication. During each camp session, therapists assess each individual’s current method of communication, their motivation to use a given system, and potential accommodations needed to make those methods more effective or functional for the individual.

Kris’ Camp Staff also uses a variety of methods of competency-based communication which provide visual input to improve processing and language output including yes/no cards, word cards to indicate choice, word/phrase boards, and/or letter boards. The goal is to provide the child with a functional communication system that allows communication without reliance on verbal output. Persons with autism have shown that through the use of these systems, verbal language is developed and independence can be achieved. When using these techniques, we also implement the least to most strategy. For example, if a child can immediately answer a given question related to choice without any input from the therapist, then that, of course, is a very independent response and no intervention is needed. If a child demonstrates difficulty, then ample processing time is provided, followed by the presentation of word cards. After a period of time, if no response is made verbally or by the touch of a card, then facilitated touch is used to help them initiate the move to a card. Facilitated touch as described above is started at the shoulder and then gradually moved down to the hand/wrist only after the child does not initiate movement. The use of these techniques accesses the visual sense in combination with the auditory channel in order to facilitate more efficient processing of information, and subsequent related output.  – back to topAugmentative Communication/Pointing Methods 

In the early 1990s, a method called facilitated communication was introduced in the United States through an article in the Harvard Education Review: Biklen, D. (1990). Communication unbound: Autism and praxis. Harvard Educational Review, 60, 291–314. Facilitated communication (FC) is an alternative means of communication for people who cannot speak or have limited verbal language. The technique has been used as a means of expression for individuals with severe disabilities including persons with labels of mental retardation, autism, Down syndrome, and other developmental disabilities. This method provoked huge controversy as while proponents claimed they had experienced huge leaps in communication with persons previously non verbal and diagnosed as mentally retarded, many attempts at validating the technique under controlled conditions demonstrated not only little validation, but also a strong potential for influence by the person facilitating.

Yet, there are many individuals who have used this method, starting out with resistance at their hand, for years and eventually became independent in their typing. (Autism is a World, Wretches and Jabberers). It is our best guess at this point that many children with autism have the capability to learn to read and communicate through typing. But, children with autism are unusually susceptible to external cues as is evidenced in so-called prompt dependence in the discrete trial training of behavioral therapies. The scientific term for this is ‘thigmotaxis’. This would be one reason that controlled experiments have shown a high likelihood of influence, yet the facilitators are unaware of guiding the person.

Other methods that appear to be based on the phenomenon of severe motor planning difficulties, with the ability to learn the written word are the Rapid Prompting Method and the Informative Pointing Method. Soma Mukhopadhyay is the mother of Tito, a child with autism who she taught how to type and then write. Tito is now a published author and currently, as a young adult, is learning to use his spoken voice. A recent documentary A mother’s courage: Talking back to Autism (2009) demonstrates these techniques.

Our hypothesis at this point is that children with autism can learn not only pictures, but also written words. There is evidence through clinical and imaging studies in autism that indicate areas of the visual pathways that transmit information about objects (pictures or words) are intact, while pathways transmitting spatial and movement representations are poorly connected. The techniques used in all of these pointing methods take advantage of touch and rhythm to help the child access their motor pathways in a different way. The ‘down side’ of needing to use these techniques is there is the potential to influence the typer, as communication occurs.

One might say that because there is the possibility of influence, one should not use these methods at all. It is our position that to not give children who could learn to communicate through typing this opportunity, is much more detrimental. However, due to the controversy surrounding this technique, we acknowledge our ethical responsibility to train and educate Kris’ Camp staff in the proper use of FC and other communication methods to protect the individuals we serve. Additionally we emphasize the importance of using a least to most strategy to maximize the individual’s independence as well as supporting a whole communication system that will allow each person the most success in functional communication.

A recent blog post by Ralph Savares, from a parent perspective,  closely aligns with our approach.
http://goo.gl/wrw6sX – back to topProvision of Family and Therapist Support

Therapists meet at the end of each camp day to discuss individual responses, program changes, and implementation of treatment ideas at great length. All of the information gathered in these staff meetings is compiled in preparation for parent meetings at the end of camp. The multidisciplinary team coordinates recommendations for each family based on the individual’s responses during the 5 day program. By pulling from the range of disciplines with varying experiences, focused and led by parent goals, many of the kids experience a jump-start in their functional abilities at or shortly after camp.

History

The camps are named after Kris Moore (5/30/1988 – 11/9/1993), a wonderful little boy who touched many people in his brief life. Kris suffered from infantile spasms (a form of epilepsy) and died from head injuries sustained in a fall. He is the son of Kathy Berger and Will Moore, and brother of Chelsea and Kevy Moore. We miss him very much.

A friend recently asked me to write a letter explaining why I want to start Kris’ Camp. I thought it would be easiest to just sit down and write her a letter. Before I started, I organized my desk and came across one of my old notebooks. Coincidentally (or was it?), it was filled with `to do’ lists from work and home from the time of Kris’ 2nd brain surgery: May 1993 until November 1993 (he was 5). Also in there were a couple of letters I wrote and the Adam’s Camp information.

One of the `lists’ I came across was a schedule. It plotted out my work schedule, and time to spend with Chels and Kris individually. I guess Kevy was still young enough that I figured I’d fit her in in the middle of the night. Looking at it made me feel a little ridiculous, but reminded me of the `craziness’ of our lives then. How much I constantly worried and `strategized’ how to best fill my children’s needs, never mind my own or those of my marriage. And, on the top of that concern list was Kris’ infantile spasms and development delays. What new strategy course would just put him, and the rest of us, on the path to happy, fulfilling lives? What was the newest drug doing to him? Would it start working if we just stuck with it longer? Would the new surgery work? Should I use drugs at all (for Kris!)? Would a change in diet work? Should I trust this doctor or this teacher? What are his seizures doing to him? What new programs are out there that he’s missing–at this `early age’ when intervention is critical–because I have not found them. Should I quit work and lock myself in a closet with Kris and work with him 24 hours a day? Should I ask my parents if I could move back to Chicago and live with them so my mom could help out and I could work with Kris? What would that do to my marriage and Will’s relationship with his kids? Finally, who do I believe when I look into this little person’s face and he looks so intelligent–so knowing; the doctor who said he is profoundly mentally retarded or my own instinct? Can I be objective?

There was more. Should we let Kris eat what he wants and figure that he will eventually try new foods or should we physically restrain him–like we had to to `force’ his medicine down him–and `force’ him to eat what we were eating (his diet was very limited in the last year)? How long would we go through it before he stopped screaming? When will he sleep through the night? What is he thinking when I tell him for the for the fifth time at 2 o’clock in the morning that he needs to go to sleep and bangs on the door, screaming? Can he sleep? Should I go in every ten minutes and tell him he’s OK–like some of the Doctor’s suggest–or should I `coddle’ him more, not expecting him to be able to sleep–like other’s have recommended. Can I handle either choice? Will there come a time when Kris is 7, 9, or 15 when I cannot `handle’ him safely? What would we do then?

Will the stress of it all be too much for us? What was all this doing to Chelsea and Kevy? Why was Chelsea crying everyday when I picked her up from daycare (that only lasted a couple of weeks)? What should I tell Will when he’s frustrated that I have no time for him? How do I best help Kris? How do I best help us, as a family? The film `Lorenzo’s Oil’ somewhat captures what it was like.

So, I guess I got into lists. Maybe I figured that somehow they would create some order. God knows I had tried everything else I could think of.

I remember chasing Kris around with Chelsea in my arms, when she was just a baby, playing peek-a-boo with them. I was so tired! But hell if I wasn’t gonna let Kris know he had a sister! They both were laughing and giggling. It was the only thing I could think of to have Chels `get into’ Kris’ world. It worked for a few precious moments, but it was so hard! He just didn’t sit still for very long. 

Of course, there were positive things/people in our lives. There were things that Kris enjoyed, so we spent most of our time doing those things: swimming, playing Joni, swinging, watching Disney `Sing Along’ videos. But he wasn’t really happy either. He spent a lot of time crying and being frustrated which translated into the rest of us feeling that way. Why was he screaming one day as he ran across the lawn when nothing seemed to happen? Overall, nothing seemed to really work. Kris was not speaking, he was frustrated, I was exhausted, our marriage was strained, and I wasn’t able to spend enough time with any of my kids. 

When Laura Koch, a friend, phoned me in early 1993 I was just `adjusting’ to nursing Kevy and taking care of Kris and Chels. Kris was scheduled to go in for surgery in May. She told me about Adam’s Camp, a therapy camp for kids like Kris and a respite camp for their families, in Colorado. I thought: `Well, it might really be good.’ and signed us up. Will was dubious, but went along. 

When we arrived in at Snow Mountain Ranch (i.e., Adam’s Camp) we had just finished a 3-day, 1000+ mile car trip with three children under 5 (ironically, Kris was the easiest to travel with!). As usual, we were running late and had a half hour to unload the car and settle into our cabin before the introductory meeting. It didn’t exactly feel like respite! To make matters worse, Kris woke up in the middle of the night whining. He had blood dripping from his ear. At 5 o’clock in the morning I drove him to the Granby medical emergency clinic. He had an ear infection and the change in altitude had created such pressure that his eardrum burst. He was not a happy camper when I dropped him off late at the therapy room (the therapists had written, in block letters: PLEASE BE ON TIME!). 

The music therapist, Jennie, told me later that when he walked in that morning she thought to herself: `What am I gonna do with this child?’. She felt really uneasy. Later, she shared with me what a great experience it was to work with him. Her words were something like “they were communicating 100% through music – I’ll never forget the depth I saw in him.” 

The incredible thing is that someone had the time and education and sensitivity to see that in Kris. He knew she saw it, too! Of course, I saw it in him, and I was often told by educators and therapists who worked with him that he was neat, etc., but they were so overwhelmed with the # of kids they saw that they never had the time, energy and quiet space to be able to reach him. That is what makes Adam’s Camp special. It is also what I plan to reproduce with Kris’ Camp. 

I remember as clearly as if it were yesterday picking Kris up at the end of a therapy session. He was so proud and just full of himself in a way he had never–indeed, could never have–been before. He `got in my face’ in a way he had never done before; like a toddler pulling on mommy’s shirt and not stopping until s/he had her undivided attention. “Ahhhh, choo-choo. Ahhh, choo-choo.” He was `telling’ me all about what he had accomplished and how happy it made him feel. I was overwhelmed with emotion. I was bursting with pleasure to see him so fulfilled. Whenever I diverted my attention elsewhere, he would pull me back with a `word’ or touch of his hand. This was a 5 year old `autistic’ child and he was definitely reaching out to me. He felt empowered. It was incredible. I still get goose bumps remembering the change in him. And it certainly wasn’t like I hadn’t tried. It was just that those special people, in that time and place, without distractions, were able to do something incredible. 

My most precious memory of the week we spent at Adam’s Camp was from the last hour of therapy. It was a music group and parents and siblings were invited. I almost didn’t go because Chels was napping. But Will stayed with her and I brought Kevy with me. I know he regrets not having been there. 

Throughout Kris’ life we had tried to teach him to sign. We spent hours in the bath or shower singing “Twinkle, Twinkle” or “Choo Choo” trying to get him to ask for `more’ by signing. How many times had we stopped his swing (we did a lot of swinging then) and taken his hands to motion for more (Chelsea picked it up and `more’ was her first `spoken’ (in sign) word!)? Though he knew the sign and understood it, he wouldn’t make it with his own hand. Instead, he would reach for my hand or Will’s hand, and move our hand through the sign. He could not initiate it with his own hand. For whatever reason, it was just really hard for him. 

At Adam’s Camp, however, the therapists (esp. Jennie) reached him. During that last session they went around the circle and sang a little `diddy’ about each of the four children (Adam’s Camp provides more therapists/aides than children, a critical ingredient to its success). When they got to Kris, they sang about him playing music. He stood up and looked around the circle. His eyes found mine and locked in. His chest puffed out and he huffed in that funny way he had when he was excited. He just stared at me with this proud smile across his face: `Mommy, look at me!’. And then he signed–all by himself–`play’. This severely retarded boy knew exactly how hard it was for him to get to this point, and how much that would please me. It was so special. I was so proud of him. 

It will not surprise you, I’m sure, that the tears are streaming down my face as I remember and write this. Recalling how happy a time it was for all of us; how difficult a time we had when we returned to Riverside; and that Kris died three months later; it often feels surreal, like some sort of a weird dream. Oh, how I wish I could reach out and touch his face; see that smile; hear his voice. 

Well, as corny and sappy as this sounds, for that one week we had a happy, healthy, fulfilled family. Because Kris’ needs were so extraordinary, when his were met it meant that the rest of us could relax, enjoy and be happy too. 

My friend asked me to write to explain what Adam’s Camp meant to me and why I am starting Kris’ Camp. I hope I have been able to convey some of what it meant to me. I have founded Kris’ camp because, if it does nothing more than provide that experience for one other family, it will be a success. Naturally, I cannot guarantee that families who attend Kris’ Camp will be as profoundly affected as we were, but I know that there are untold numbers of families searching and struggling like we were, and I further know that as hardworking as the people are in existing institutions, they simply do not have the ratios or time to have that kind of an impact. New institutions, like Adam’s Camp, need to be created and adequately funded. So I have founded Kris’ Camp. Hopefully, many more than one family will find a `special place’ at Kris’ Camp. 

I love you Kris! Thank you Adam’s Camp! — Kathy Berger, July, 1995