written by Grace Gerry, Foster Parent
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.
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.
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.
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.
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
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.
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.
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
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.
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.
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.
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?
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,
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.
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
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)
children may not be ready to leave home until their late twenties.
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.
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.
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 firstname.lastname@example.org
FAS Community Resource Center