Whitecrow Camp for Children with Fetal Alcohol Spectrum Disorder: A pediatrician's view

For a week last summer, I was a camp volunteer. I was seeking professional depth, but what I experienced so affected me that I have changed the way I practise.

When I graduated from medical school in 1975, I knew nothing about fetal alcohol syndrome (FAS). Indeed, the seminal article by Smith and Jones describing the features of FAS had only been published in the Lancet 2 years previously. Even in 1984, when I became a pediatrician, Nelson’s Textbook of Pediatrics gave only a few lines to the subject. Then, it was thought to be a rare condition. It is now known to be relatively common, affecting approximately 1:100[1-4] in a range of different ways. The term fetal alcohol spectrum disorder (FASD) is now used.

I trained in developmental behavioral pediatrics, which I completed in 1995 at UBC. I met many children and adolescents who have been prenatally exposed to alcohol. I attended conferences and workshops. I listened to the stories from birth, adoptive, and foster families about the impact of FASD on their lives. I presented talks to professionals and other community groups. In my desire to know more, I attended a Whitecrow Village Camp.

Whitecrow Camp was started several years ago near Burns Lake by Ms Kee Warner, an adoptive and foster parent of children with FASD. She wanted to give her kids the chance of a successful camp experience. Unfortunately, the special needs of children with FASD often preclude their participation in regular camp programs. They are often sent home for disruptive behavior. On other occasions, the emotional challenge is too great. A fear of failure may push them over the edge, into despondency. Since there were no specific camps for children with FASD, Kee Warner decided to start her own. She has created a very successful and flexible movable feast.

As a member of the Victoria FAS Community Circle, I had heard about the program. When the opportunity to volunteer at the Cowichan Lake venue came along, I decided to give it a go. My work schedule allowed me to complete the 3-day weekend pre-camp training program, and so for a week last summer, I became a camp volunteer. I was told not to bring my “doctor’s bag” with me.

My expectations from the camp were not excessive; I simply wanted to be in a better position to effectively counsel families about FASD following the diagnosis. I was seeking professional depth. I had not expected to be emotionally affected by the experience, nor had I considered that it might change my own practice.

People with FASD often have damage to the part of the brain required for self-regulation. In a medical report, I would term this “inhibition of socially inappropriate behavior.” After my experiences at Whitecrow, however, I know that with FASD it really means that “he or she doesn’t have an off button.” This is a very simple idea, but of critical importance if one is aiming to avoid behavioral deterioration. Once those with FASD start down a behavioral pathway, such as becoming increasingly physical toward others, it is very hard for them to change their behavioral direction or trajectory. The take-home message for me was: don’t push the on button, and if you do, try to recognize it early and redirect.

People with FASD are very literal in their interpretation of language. Alcohol appears to damage part of the brain that is responsible for language nuance and subtlety. Over coffee one evening, we were talking about a school in Victoria that historically used to segregate the boys from the girls. On the school wall, carved into the stone were the words boys and girls over their respective doorways. However, when Annie heard the part about girls and boys being carved into stone, her comment was “that must have hurt them.” I learned to avoid the use of the negative. “Don’t run” was ineffective. “Walking feet” made for good communication. I became extremely aware of my language at Whitecrow. I realized that I enjoy wordplay, but that it could be a barrier. I learned to keep my language simple and unambiguous.

People with FASD have difficulty in the area of generalization. At Whitecrow, the rules applied to everyone, not just the campers. For example, the beach and waterfront were out of bounds except when a lifeguard was present. Volunteers were required to model the behavior that was expected of the campers. This precluded walks to the beach at sunset. It also curtailed any goofing around that might be misinterpreted.

Executive function is usually damaged by prenatal alcohol exposure. For some reason the prefrontal cortex, where this function is mainly located, is particularly vulnerable. Changes in routine, schedule, and planning have the potential for creating confusion in the mind of an affected person. This was forcefully brought home to me on the day when a government member of the Legislative Assembly arrived, together with the media, to view the camp. It threw a wrench in the day for many kids, because their schedule was disrupted. There were emotional repercussions to this, as many of the children became hyper and labile later in the day. The limbic system, which is responsible for emotional regulation, is located close to the prefrontal cortex. It is not surprising that emotional volatility may accompany changes in routine.

One of the more difficult personal challenges for me was withholding physical contact with the kids, unless they initiated it first. With my own children, that was always part of the fun of being at the beach. At Whitecrow, roughhousing in the water at the beach was a no-no. This related to the “on-off switch” phenomenon and also the need to model behavior. Alcohol often interferes with sensory processing. For those with FASD, a simple hug or chance touching may be painful and may elicit an aggressive response. Professionally, I realized that I would need to stop giving reassuring touches to my patients.

Some of the volunteers at Whitecrow were themselves affected by FASD. Although I am very experienced at recognizing the disability in children, I did not recognize this invisible disability in my fellow volunteers until I had been with them for some time. It was only by listening to them speak and tell their stories that their impairments became obvious to me. Their physical appearance gave no clue. Until Whitecrow, I had not personally met anyone with FASD who had appealing facial morphology. This may be, in part, because lay people are more apt to recognize the disability in children if the distinctive facial dysmorphology is present and thus seek a diagnosis. However, facial dysmorphology occurs only when the mother has consumed alcohol during a particular few days of her pregnancy. Looks are therefore deceptive, because people without the facial dysmorphology are apt to be under diagnosed. The effect of alcohol on the brain will, of course, be the same.

It is well known that diet may affect an individual’s behavior.[5] Until Whitecrow, I hadn’t appreciated how much it could affect group behavior. Whitecrow is a sugar-, candy-, additive-, and preservative-free zone. Both kids and volunteers ate the same food and from my observations both benefited from this dietary exclusion. Mealtimes were calm, with minimal ambient noise levels and bedtimes were not hectic or frazzled. Of course this may just be an association, but I was impressed by how easy it was to remove these unnecessary dietary items without any adverse affects. This observation has certainly changed my counseling recommendations.

There were no significant injuries during the week. This is remarkable considering there were nearly 70 individuals engaged in outdoor and adventure activities, whether or not they were cognitively challenged. There were a few hornet stings and a couple of minor abrasions (walking feet not used), but otherwise we all stayed in good health. Apparently, this has been the norm for Whitecrow over the years. When structure, routine, predictability, a higher level of supervision, and a sugar-free diet are added together, children with FASD stay healthy.

It was not until I attended a Whitecrow Village Camp that I understood how I had inadvertently limited my understanding of FASD by restricting myself to a clinical setting. I highly recommend the experience to anyone with a sense of fun and a need to know more about this disorder.

References

1. Chavez GF, Cordero JF, Becerra JE. Leading major congenital malformations among minority groups in the United States, 1981-1986. MMWR CDC Surveill Summ 1988;37:17-24. PubMed Citation Full Text 
2. Sokol RJ, Clarren SK. Guidelines for use of terminology describing the impact of prenatal alcohol on the offspring. Alcohol Clin Exp Res 1989;13:597-598. PubMed Citation 
3. Sampson PD, Bookstein FL, Barr HM, et al. Prenatal alcohol exposure, birthweight, and measures of child size from birth to age 14 years. Am J Public Health 1994;84:1421-1428. PubMed Abstract 
4. Sampson PD, Streissguth AP, Bookstein FL, et al. Incidence of fetal alcohol syndrome and prevalence of alcohol-related neurodevelopmental disorder. Teratology 1997;56:317-326. PubMed Abstract Full Text 
5. Schab DW, Trinh NT. Do artificial food colors promote hyperactivity in children with hyperactive syndromes? A meta-analysis of double blind placebo-controlled trials. J Dev Behav Pediatr 2004;25:423-434. PubMed Abstract 

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Jonathan Down, MBBS, MHSc, DCH, FRCPC

Jonathan Down is a developmental pediatrician at the Queen Alexandra Center for Children’s Health, Victoria, BC. He is also an associate member, Division of Developmental Paediatrics, BC Children’s Hospital, Vancouver, a clinical assistant professor of Pediatrics at the University of British Columbia, and an adjunct associate professor at the University of Victoria.