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