5 Tweens and Teens 137large. An interdisciplinary staff is employed by the RCF to maintain the health
and well-being of the residents. These include doctors, nurses, personal care
assistants (PCAs), social workers, therapists, teachers, and administrative
personnel. Many families desire our specialized level of care, therefore the
wait-list for admissions is quite long. Families expect to wait several years
for admission. In addition, the facility does not accept adult admissions (aged
18 and over). As a result, some families may place their child on the wait-list
before they are emotionally ready to have their child move.
Sophie’s Story
Sophie is a 16½-year-old girl diagnosed with spastic quadriplegic CP (indi-
cating that all of her limbs are impacted by the condition), cortical blind-
ness, and hearing impairment in one ear. She has an adapted wheelchair but
can, with support, use an adapted walker to ambulate short distances. She
has the ability to echo some speech but does not generate functional speech
to indicate her desires or needs. She generally uses facial expressions and
vocalizations of pleasure or displeasure to indicate preferences. Cognitive
testing indicates that she functions at the developmental level of a 12-month-
old. She is incontinent and wears an adult sized diaper. Sophie has an active
seizure condition controlled by seizure medications that can leave her lethar-
gic at times.
Sophie’s parents, Sharon and Dan, first placed her name on the wait-list
at age 14. After 2½ years they were informed that Sophie’s name was at the
top of the list and that she would be admitted to the RCF in the near future.
At that time they came in for a preadmission assessment and opted to imme-
diately enroll Sophie in the school program as a day student to start getting
her familiar with the staff and surroundings. I met with Sharon and Dan
while Sophie had a chance to interact with the other students in her class.
Sharon became tearful as she discussed having her daughter move to the
RCF. She and Dan clutched each other’s hands as they admitted their con-
cerns for Sophie’s safety and well-being; fearful that staff would not under-
stand Sophie’s needs and that due to her inability to verbally express herself,
staff would be unaware of any issues from Sophie’s perspective. Sharon
spoke of regret and a sense of failure that they could not manage Sophie’s
needs appropriately any longer. Both parents committed to being actively
involved throughout the transition process to facilitate Sophie’s adaptation
to the RCF.
About 2 months after Sophie began the school program, a bed became
available and Sophie’s family was told that the RCF could admit her. They
accepted the admission. Sharon and Dan are the parents of three children;
Sophie is the middle child. Their oldest child, a senior in high school, was in
the process of sending out college applications at the time of Sophie’s admis-
sion to the RCF.
Despite being physically and chronologically an adolescent, cognitively
Sophie functions at the level of a 1-year-old. Many misperceptions persist
regarding the abilities of children with severe cognitive impairments to expe-
rience and process loss and to grieve (Sormanti & Ballan, 2011). Children with
cognitive impairment have been deemed unable to form the emotional bonds