|
|
 |
By Susan Kabot, Ed.D.
Camp Ramah Darom, in partnership with Nova Southeastern University,
provides an overnight camp experience for children
with autism and their families. Based upon Ramah
Darom's five-day
family camp model, adaptations have been made to
ensure that the children with autism, their siblings,
and parents all enjoy a successful camp experience.
Located in rural, north Georgia, this camp draws families from as far
away as California and Canada. Having successfully finished its fourth
year, other camps around the country have expressed an interest in creating
similar programs.
An Idea is Born
During Ramah Darom's
2004 Family Camp, a single mother and her three
children, all on the autism spectrum, participated
in the session. At the same time, a member of the
camp's
Board of Directors brought up the idea of providing
some type of camp experience to children with autism.
Initial funding was obtained from the Barry and
Judy Silverman Foundation, a private foundation,
and the Foundation for Jewish Camping. That board
member also happened to serve on the board of Nova Southeastern University,
an institution well respected for its programs and expertise in the
field of autism. A partnership was born.
The Family Camp Model
Ramah
Darom has offered a f ive-day family camp session
following the camp season for the past ten years.
This camp currently enrolls for t y fami l ies in the program. Several
components are offered: morning camp activities for the children, morning
learning and recreational activities for the adults, afternoon family
time, an after-dinner evening family activity, and night-time adult
social activities. The camp occurs over the weekend and Shabbat (the
Jewish Sabbath) is observed with religious and slower-paced leisure
activities.
Adapting the Model for Campers with Autism
It is important
to understand the adaptations that need to be made
to a family camp model to make it successful for
families that have children with autism spectrum disorders. Social-communicative-behavioral
symptoms require one set of accommodations, while
the diverse range of cognitive functioning found in children with autism
requires another set of modifications.
The Staff
The need for close
supervision, prompting to participate in activities,
and the need to individualize activities requires
a 1:1 staffto- camper ratio. Each camper with autism is paired with
a chaver (pal) who assists him throughout the week. At Camp Yofi, the
family camp for families of children with autism provided by Ramah Darom,
most of the campers are not previously known to the camp administration
and a zero reject admissions model is in place so it is critical to
have enough staff available to handle any children with autism who may
present with significant or unexpected behavioral challenges. It is
also important to have enough staff on hand who have expertise in autism,
including both professionals in the field, as well as individuals having
a family member with autism. At Camp Yofi, such an experienced person
leads each of the groups of four to five campers with autism. It is
also important to have a variety of camp staff to lead the activity
groups. The autism professionals are helpful in supporting the specialists
in the adaptation of traditional camp activities to meet the learning
style and functioning level of children with autism.
The Program
The
program consists of parallel schedules for the
groups of children with autism, the groups of siblings, and the adult
family members. During mealtimes, children eat with their parents. Supervised
playrooms are available during the second half of lunch and dinner so
that parents have the opportunity to finish their meals in peace and
socialize with other family members and camp staff.
The morning sessions
consist of a rotation of six activities for the
children with autism and the siblings. Activities include: arts and
crafts, swimming, climbing the tower, nature, singing, dancing, cooking,
story-telling, and yoga. While children are engaged in these activities,
parents have the opportunity to participate in recreational activities
and learning/support sessions. At Yofi, some of these are of a religious
nature, and some are of an autism/ support nature.
After lunch, the chavers have some free time, and
families are able to utilize camp facilities as
a family, including the pool, boating, and tower climbing. Other activities
during this time may include family arts and crafts, scrapbooking, yoga,
cooking, and weaving. The chavers rejoin the family in the late afternoon.
During that time, the chaver can be responsible for an activity with
the child with autism, or the sibling, or join the whole family in an
activity like hiking.
After dinner, there is an evening family activity
for the whole camp. Examples of successful activities
include campfires, camp Olympics, scavenger hunts, and sensory carnivals.
The day ends with latenight social activities for the adults, with child
care provided by the camp staff who are stationed outside the
sleeping facilities. This time allows the parents
and grandparents to socialize without worrying about their children.
Many of the parents describe this time as the only time they have had
with their spouses to go "on a date" since they had a child with autism. During
this time, adaptations to popular television shows
like Iron Chef, Project Runway, and The Singing
Bee take place. Other nighttime social activities
include salsa dancing and game playing.
The Physical Facilities
The
physical facilities at Ramah Darom are exceptionally
well-suited to this type of family camp, but many other camps would
be able to use their facilities for this type of program. Ramah Darom
was designed to operate as a year-round retreat center and has several
large buildings featuring motel-like accommodations with private bathrooms
and interior corridors. Families are assigned one or two rooms depending
upon how many members attend the camp. Families of children with autism
are not assigned to rooms with second exits leading to outside patios
in order to ensure safety at all times, and especially with consideration
to night-time child care. Older, more experienced senior staff are assigned
to these rooms while younger staff are assigned
to bunk-type buildings.
Activity areas are scheduled for the groups
of children with autism and siblings to provide
for the most economical and efficient movement around the camp. For
the youngest sibling group, activity specialists often go to a location
where these campers stay. Campers with autism who are resistant to making
the transition to another activity/location are often cajoled through
rides on the golf carts or use of behavioral reinforcement strategies.
Care is taken in the scheduling of the pool and lake activities to
ensure the safety of the children. The children with autism are not
scheduled to use the boats and water trampoline without parental supervision.
These activities are available during family time.
As in traditional camping, it is important to have enough indoor spaces
to accommodate activities on rainy days. It is
critical to have substitute activities planned to take the place of
outdoor ones in the event of rain. Children with autism need to have
the least amount of commotion possible, so this must be well thought
out in advance. It is also important to have alternate plans set up
for family time, so that families have other options during inclement
weather.
Essential Elements
There are a number of components that make
Camp Yofi a success, and camps interested in replicating
this model should pay particular attention to these
elements.
On-Site Autism Expertise
Camp Yofi is successful because it
has been possible to access strong and plentiful
autism expertise through its partnership with Nova Southeastern University.
It would be helpful for any camp that is considering replicating a model
like this to develop a relationship with either a university, a state
or local autism agency, an autism support group, or a school system
that may be able to share resources during the summer months. The lead
autism person must have extensive experience in adapting programs for
children with autism, behavioral techniques effective with children
with autism, and the ability to
collaborate with the traditional camp administration.
This person must be able to make decisions quickly and confidently,
as extensive problem solving and program adaptation will enable each
participant to be successful in the program. This person should partner
with the program director in leading evening problem- solving sessions
with the staff.
It is also important to have a number of other people
with experience in autism to provide support during
the camp program. Placing a lead person with each group of campers with
autism provides immediate modeling and coaching for the rest of the
1:1 staff. They can also help the activity leader to adapt the activity
if the group, or a member of the group, has difficulty participating.
Staff Training
In most cases, the camp will draw staff from its traditional
summer camp. If the traditional camp already serves children with special
needs, then it is likely that the staff will have many of the skills
necessary to support the children with autism. However, if staff are
drawn from a traditional camp without experience in caring for special
needs children, it will be necessary to include a training component
presented by an autism expert before the families arrive at camp. All
of the camp staff need information about the characteristics of children
with autism, focusing on the age span that is served by the camp. It
is especially important to provide the staff with strategies known to
be effective with many children with autism. Training should include
the use of visual supports for transition and behavior, including activity
schedules, visual first-then boards, and token boards. It should also
include how to use positive reinforcement, covering token economies,
praise, and tangible reinforcers including preferred activities, objects,
and edibles. The emphasis has to be on "making
it through the day" successfully, rather than implementing behavior
change programs because of the short nature of
the program. It is also important that staff be well-trained in the
use of universal precautions. While universal precautions are "universal" and
not specifically targeted to children with autism, these children are
more likely to need assistance toileting, have accidents on uneven terrain,
and are less likely to be independent in wiping their nose.
Another
area that should be covered is crisis management.
Staff should be taught protective procedures such as blocking to prevent
being hit, kicked, or bitten. They should be taught how to get a child
to release a bite and remove hands from their hair. This training should
emphasize that they should not attempt to physically move a child who
is lying on the ground having a tantrum or who is resisting moving to
the next activity. They should allow the experienced group leader to
make a decision regarding the management of that situation. If a child
has self-injurious behavior, the staff should be prepared to implement
procedures to prevent injury to the child. The camp's autism expert
should make decisions, in collaboration with the parent, on how to handle
such situations.
High-Interest Activities
The success of the camp depends
upon choosing activities that are motivating and
meaningful to children with autism. This entails
making adjustments to meet the developmental, as well as chronological,
needs of the children. At Yofi, the camp's
zero reject model means that there are typically a wide range of cognitive
abilities in the group. The activity leader must
be able to adapt the activity to meet this need. It is also important
to have a choice of activities during each period so that if children
have a short attention span, they can move on to something else, or
if a camper refuses to participate in a certain activity, there is another
that she may choose. Another adaptation made at Camp Yofi is to ensure
that there is an "activity
backpack" at areas that require
waiting. For instance, at the climbing tower, where
children have to wait for their turn on the tower,
staff have a backpack that includes a variety of objects that children
with autism often like. Bubbles, balls, coloring books and crayons,
and fidget toys are some of the items provided.
An Emphasis on Safety
Most camp properties have many characteristics
that make increased attention to safety mandatory to ensure the wellbeing
of campers with autism. Children with autism often have no awareness
of danger, so the camp staff must be hypervigilant and attentive to
manage risk. One of the challenges at Camp Yofi is that as the parents
become more comfortable at camp, they are more likely to spend time
conversing with other parents and are distracted from their responsibility
to observe and attend to their children.
Before camp begins, it is important
for the autism specialist to spend time analyzing
the physical environment of the camp for potential hazards and developing
strategies to reduce risk. Of course, the water areas including lakes
and pools must be considered. For example, during campfire and breakfast
on the beach, which are both held at the lake, staff stand in a line
in front of the water in the form of a human fence to ensure that no
children end up in the water. Other areas to review include exits to
buildings and rooms that will be used for activities. When large groups
are in these areas, it is important to have staff assigned to man these
exits to prevent children from wandering off unattended.
At Yofi, each
group leader and activity area are equipped with
first aid kits in fanny packs so that small injuries can be attended
to on the spot. Gloves, first aid cream, a variety of band-aids, tissues,
and hand sanitizer are included.
The Needs of the Siblings
At Camp Yofi,
siblings are made to feel special, too. They participate
in their own groups in the morning activities, and then share time with
their families. The siblings often represent a wider age range than
the children with autism so their program must include activities appropriate
for children ranging in age from toddlers to teenagers. Particular attention
must be paid to the program provided to the teens. Some are given the
option of being a "junior counselor" if that meets their
needs. Others are happy to participate with the group. This flexible
grouping and programming depends upon the age distribution of the siblings
during a particular camp session.
There is a special sibling lunch provided
for those who are of an age for which this activity
would be appropriate. Generally, young elementary
through teens are included in these activities. The lunches are generally
provided for the group of siblings who share activities together, but
occasionally adjustments are made for the lunch if it is felt that a
particular child will do better with conversation at a different level.
The lunch is led by someone with experience in sibling groups, either
a mental health professional (if available) or the autism expert. During
these lunches, the conversation revolves around their experiences with
their sibling, questions they have, and, for the teenagers, concerns
about their role in their siblings' futures.
Sometimes, parents do not want their sibling child
to participate in the lunch, either because they do not use the "autism" word
at home or they are not comfortable with the sharing
of experiences.
When there is a teenage sibling
group, night activities are led by the sibling
counselor of that group so that they feel special and can spend time
watching videos, participating in craft projects or playing games. A
special evening snack is provided to them.
Support for the Families
At Camp Yofi, a spiritual, religious family experience
is an important part of the program. Many of the families express the
isolation and rejection they experience from the religious organizations
in their own communities; Camp Yofi allows the families to participate
in religious services as a family and activities without worrying about
the reactions of others in the congregation. While the camp is not designed
to provide the psychological support needed in a therapeutic model,
it is natural that whenever families of children with autism get together,
they become their own therapeutic support group and, therefore, it is
helpful to have someone on staff that is sensitive to these issues and
can monitor the group of families. The NSU partnership provides post-doctoral
psychology residents or graduate students in family therapy and psychology
who have led parent education sessions on stress reduction, siblings,
and "For Fathers Only." The autism specialist has led sessions on "Ask
the Autism Expert." During
all of these sessions, issues arise that may need
some expertise and support from the professionally trained staff.
Families
have developed their own support networks following
the Camp Yofi experience. There is a list-serve that shares information
about interesting programs, other resources, advocacy activities, and
issues facing the families like guardianship and the development of
special needs trusts. Families that live in the same general geographic
area have bonded and maintained their relationships by visiting and
sharing holiday and vacation time with each other.
Replication
Camp
Yofi provides a powerful experience for families
of children with autism. Although this model is
faith-based and designed to meet the needs of children with autism,
family camps can be developed in secular models to meet the needs of
other special populations.
Originally published in the 2009 July/August
issue of Camping Magazine.
|
