Whitecrow Village

As I entered the food cabin at the summer camp for children with Fetal Alcohol Syndrome/Fetal Alcohol Effects (FAS/E), I was surprised that the only sound from the twenty children around the breakfast table was a quiet hum.  I was one of eight parents attending the camp near Burns Lake BC to learn more about FAS/E, while our children were involved in supervised recreational activities.

The camp is situated at Whitecrow village near Burns Lake, about three hours' drive from Prince George.  Started four years ago by Kee Warner, an adoptive and foster parent of children with FAS, the camp included daily educational seminars for parents, while the children went horseback riding, boating, hiking, or did crafts.

The week-long camp for parents included a presentation by a young adult with FAS about his experiences; techniques to defuse and manage aggressive situations with children; effective interventions and communications with children with FAS/E, and FAS from the First Nations perspective.

It was fascinating to watch Kee relate to the children and the hands-on techniques she and other staff members used to manage the children.  There was a strong emphasis in the camp on safety, supervision, simple instructions, clear boundaries and lots of structure for the children.  One of the rules that made breakfast work was that each child had to have one hand on his or her plate and the other on the spoon.

If a child's behaviour showed signs of going off track, an adult intervened promptly.  This was because children with FAS/E find it difficult to control their impulses or to foresee the consequences of their own behaviour.  Kee finds it best to stay on top of errant behaviour before it escalates.

Another lesson was the need for repetition because of poor short-term memory.  Bev Zorn, another foster/ adoptive parent of children with FAS, shared stories about her experiences.  When teaching her children about sexual boundaries for example, she reminds them about the rules before any new situations like sleepovers.  She tries to use concrete images because they find abstract concepts like time, money or boundaries hard to grasp.  She once drew a line on the wall to show how tall someone needed to be before dating.

Creating the right environment makes a big difference to children with FAS/E, because they have difficulty filtering out distractions.  Avoiding clutter or chaos can help the child attend more easily to what is important and avoid getting overwhelmed.  Some may be hypersensitive to certain stimuli such as small sounds or lights, while others may not notice even severe pain in their bodies.  The young adult with FAS talked about the time he had acute appendicitis and he didn't notice the pain.

Sometimes what looks like oppositional behaviour may be an indication of brain overload.  Too many instructions may make it hard to remember anything.  Sequencing problems may make it hard to organize a task like cleaning a room.  Difficulty with transfer of learning may mean they don't understand we mean all streets when we tell them not to play on a street.

When instructions were given in camp they were usually simple and specific as to the behaviour wanted.  Phrases like “walking feet”, “this is where we play”, “inside voice”, “bum on seat” were often heard, and debate was avoided.  Tasks were broken down for the child.  Positives were communicated frequently often in a visual way, e.g.  thumbs up, and prompts were given when needed, “say thank you”, or “say excuse me”.  Kee advised parents not to get upset about lying or to take it personally.  Some children with FAS/E fabricate all the time, so the strategy Kee suggested was to avoid opportunities for lying by asking the right question.  Instead of asking if the child has done their homework, just ask to see it.

Kee believes it is society that needs to change, not the kids.  Like any medical condition early diagnosis is important.  The sooner parents understand a child's disability, the sooner adjustments can be made to help the child and family cope.

FAS is a long-term disability.  It is the most common birth defect, more common than Downs Syndrome and Spina Bifida combined.  It is also preventable but unfortunately does not get as much publicity as other birth defects.

The effects of FAS/E vary, depending on what is happening in the womb when alcohol is ingested.  If the mother drinks during the brief window when facial features are forming (day 19 or 20), the child may show the facial dysmorphology typical of FAS.  If she drinks when the heart is forming, the child may be born with heart defects.  However, the crucial issue is the effect on the brain which is developing throughout pregnancy.

When brain researchers in California tested children's brain activity during problem solving, they found that a few specific areas of the brain were engaged when the control group of children without FAS/E was asked to solve a math problem.  But for a child with FAS/E the whole brain was required to solve the problem.  Therefore the brains of people with FAS/E have to work harder, so they tire more easily which further compromises their functioning.  Consistent limits and structure help the child and their family to cope with life.  Any changes in routine can be stressful.  Even a change of seating in the classroom may be stressful, because the child has to adjust everything else accordingly.  Where is the teacher, their friends, even the washroom?

In addition to the primary disabilities associated with FAS, many children suffer secondary disabilities, because of the lack of diagnosis and understanding of their condition.  Research by Dr Ann Streissguth in Washington showed that 90% of these children had mental health problems as adults, 60% got in trouble with the law,

35% were involved in inappropriate sexual behaviour (often because of lack of understanding of appropriate boundaries), many had disrupted experiences at school and had alcohol and drug problems as adults.

In contrast, in looking for protective and preventive factors, Streissguth noted the following: a stable, nurturing home especially between the ages of 8 and 12, an early diagnosis, living in at least one home for 2.5 years, getting a diagnosis of FAS/E, having their basic needs met for at least 13% of their lives and being eligible for government disability services and benefits (because so many cannot cope with a normal job).  As Streissguth expresses it, secondary disabilities do not have to become primary outcomes.

Children with FAS/E usually have spikes and troughs in their development, which can make it difficult to accurately assess their real capabilities.  An 18 year old may have the verbal skills of a 20 year old and the reading ability of a 16 year old, but may only have the comprehension and emotional maturity of a 6 year old, the money and time concepts of an 8 year old, the social skills of a 7 year old and living skills of an 11 year old.  (adapted from research by Streissguth and Clarren)

These children may not be ready to leave home until their late twenties.

Unfortunately so far the need for supportive services for these vulnerable young adults is only beginning to be recognized.  A high percentage of them get involved with the judicial system at a high cost to society, because they fail to learn from experience, are easily manipulated by others and usually end up getting caught.  Streissguth's research has indicated however that with the right support and understanding, these young people can be protected from repeated stays in prison.  There is no point in charging a youth with breach of probation, when he continually comes late for appointments, if he can't tell the time or learn easily from experience.  It makes more sense to phone him the day of the appointment and remind him of it.

At the camp we had many wonderful opportunities to share life experiences and have fun together.  We enjoyed home cooked food, with fresh bread baked in the kitchen daily, and at the end of each day we gathered around the campfire for closing circle.  People had a chance to say what they had enjoyed about their day, using a talking stick to help the children learn to listen and take turns.

On the last evening during the circle an eagle flew up suddenly above us with a fish in it's talons, just before we sang a song about an eagle and healing.  It seemed like a blessing and a sign of hope for our children born with FAS/E.  These camps run for two weeks each summer.  Kee Warner can be reached at (250) 695-6635 or email at whitecrow@ngis.ca