TABLE I Aorae AT ADMissIoN INTO THE
PRESCHOOL NURSERY
COMPREHENSIVE PEDIATRICS
1026
TREATMENT
AND
PARENT
COUNSELING
FOR
THE
PRESCHOOL
CHILD
WITH
CEREBRAL
PALSY
An
Evaluation
of
a
Parent-Participation
Preschool
Nursery
Program
E. E. Bleck, M.D., and Lee Headley, M.S.W.
T
HIS is a report of a 4-year experiencewith the parent-participation Cerebral
Palsy Preschool Nursery in San Mateo
County, California. Since 1956, 30 children
have attended this school. The experience
with these children and their parents
corn-prises the basis of this report.
The report will put forth the conclusion
of the authors that such a preschool nursery,
in which parents participate, serves several
important functions. It reaches the parent
when help is most needed, when parents are
stunned by the diagnosis and frantically
seeking an answer to their problems. It
offers a medium through which the parent
can clearly come to see the facts of the
child’s case through continued critical
ob-servation of the child and active
participa-tion in treatment plans. It offers the range
of therapeutic skills all in one place when
the child is very young, with frequent
con-sultations of parents and medical and
tech-nical staff. It allows the parents to move,
at the pace of which they are capable, to
acceptance of the child’s capabilities and
prognosis. As a result of this school these
parents accept and use medical advice more
effectively than the average parents of a
child with cerebral palsy.1
ORGANIZATION AND OPERATION OF
THE PRESCHOOL NURSERY
In San Mateo County, as in most
coun-ties in California, a public, tax-supported
school for children with cerebral palsy (the
Age
(yr) No.
I I
14 1
1
f 7
S 3
Sl 3
4 3
Total 30
El Portal del Sol School) has been in
exist-ence since 1947. At this type of school
chil-dren can legally attend, after the age of 3
years, for daily treatment and education. In
1956 it was decided that treatment could,
and should, begin earlier. Thus, for children
under the age of 3 a preschool nursery
pro-gram was set up under the direction and
financial support of the United Cerebral
Palsy Association of San Mateo County.
Children with cerebral palsy, or those
sus-pected of having cerebral palsy, from the
ages of 1 to 3 years, were admitted (Tables
I and II). Some children more than 3 years
old were also admitted because they were
too socially or emotionally immature to
enter the regular daily public
cerebral-palsy school.
Children attended the preschool nursery
thrice weekly from 9:00 to 11 :30 a.m.
Despite some obvious objections to parents
ADDRESS: (E.E.B.) 23 Baldwin Avenue, San Mateo, California.
1027
TABLE II
DIAGNOSRS OF CHILDREN ADMITTED TO THE
PRESCHOOL NURSERY
Diagnosis No.
Cerebral palsy
Spastic hemiplegia 4
Spastic paraplegia 3
Spastic quadriplegia 5
Athetosis 4
Tension athetosis 5
Ataxia 4
Tremor 1
Mental retardation only 3
Undiagnosed* 1
Total 30
* Died 8 weeks after entering school.
attending school with children, it was
de-cided to operate the school with the
par-ents participating. Parent-participation
nursery schools were common for normal
children, but for children with cerebral
palsy, none, to our knowledge, existed.
One-third of the parent group came to the school
each day. The parents not only helped with
the usual management of small children but
also spent time observing their own child
and, in some instances, writing down
ob-servations that they made on the behavior
of the child. An important part of the
pro-gram was a weekly evening
parent-educa-tion session of 2 hours duration. It soon
be-came apparent that the parents harbored
numerous anxieties, frustrations and
emo-tional problems common to parents of
chil-dren with cerebral palsy.
Therefore, group psychotherapy
meet-ings on emotional attitudes of parents were
held for mothers once a week for an hour.
In contrast to required participation in the
nursery school and parent education classes,
group psychotherapy was voluntary.
Thir-teen of 14 mothers joined the group and
remained for the duration of enrollment in
the nursery school. (Average enrollment was
two years.) Individual counseling was on
the basis of the needs of the parents, some
being seen weekly in regular session, some
less often. It will be shown further that this
was one of the most important phases of this
nursery-school program.
School parent-teacher associations have
not substituted for professional guidance as
described above. The regular public
cere-bral-palsy school (El Portal del Sol) has had
a parent-teacher association for 13 years
(
for the majority of these parents) and nobetter understanding of the child and the
problem has been observed. The
parent-teacher organizations have concentrated on
fund-raising, parties and general
get-togethers. These meetings have
demon-strated that simply “getting together” a
group of parents with this same general
problem offers little toward its solution
other than a feeling of solace that one is not
alone.
The school staff consists of a qualified
nursery school teacher, a physical therapist,
an occupational therapist, a speech
thera-pist, a psychiatric social worker and an
or-thopedic surgeon. A very complete staff
is necessary because these children have
multiple handicaps. Moreover, the parents
must be assured that everything possible is
being done in order to effect a realistic
ap-praisal of the child.
The nursery school teacher is the director
of the school and conducts the evening
parent-education program. The nursery
school teacher sets up various play activities
for the children. With these very young
children, playthings and toys assume an
important roll, because undue pressure on
the child must be avoided. The teacher aids
parents in developing the ability to
objec-tively observe their children at play.
The physical and occupational therapists
work under the direction of the orthopedic
surgeon. Much of the physical and
occupa-tional therapy consists of aiding the normal
maturation process and normal motor
de-velopment. Children who have no ability
to walk are first taught to sit; if sitting
ability is not yet present, then the child
is taught to creep. Gentle stretching of the
tight muscle groups is done when indicated.
Braces are rarely used. Excessive bracing
1028
learning normal postural control. The
speech therapist evaluates speech in all
children and applies whatever speech
therapy techniques seem advisable.
The orthopedist sees all children and
par-ents individually at a monthly clinic at the
school. At this clinic the staff gives a
prog-ress report and brings up old or new
prob-lems for discussion; children are examined;
therapy is ordered; the questions of the
parents are answered in detail.
Psychologi-cal testing is available through several
community resources.
VALUE OF THE SCHOOL
The value of the school has been assessed
in three main aspects : 1) benefit to the
child, 2) benefit to the parent and 3)
bene-fit to the community.
Benefit to the Child
Current thinking is that much more can
be accomplished for the child with cerebral
palsy if physical and occupational therapy
is begun early. The basis of the therapy
is the so-called sensory-motor learning
method, which has the following two main
objectives: 1) to teach normal postural
con-trol and 2) to teach the child to inhibit
abnormal reflexes which persist. This
tech-nique has been best described by the
Bobaths.2 Although we have used the
Bobath method when it seemed indicated,
we did not discard the classic methods of
using bracing, surgery, standing tables, etc.
The treatment of the child is highly
mdi-vidualized. With the parents co-operating
in the nursery school program, it is possible
to teach the parents proper postural
atti-tudes, which these children are to assume
at home, and to teach them simple methods
of physical therapy that they can carry out
at home. Whether or not this phase of the
program has accomplished objective
im-provement in the physical status of these
children would be conjecture, because
suf-ficient time has not elapsed to present any
conclusions and, furthermore, the
involve-ment of the palsied child is so varied that
it is virtually impossible to have a controlled
experiment.
Also, some of the improvement noted is
due to the progressive maturation of the
child. In assessing the results of any
treat-ment in cerebral palsy one must always
keep this growing-up process in mind.
How-ever, the impression of the staff is that the
early treatment as described has improved
the physical status of some of these
chil-dren.
Children who are apprehensive with
strangers and those who are fearful of other
children have gained much from the nursery
school. Six children were very
apprehen-sive; they became accustomed to group
situations, handling by the therapist and
discipline so that they were acceptable to
a regular cerebral-palsy nursery school
when they became of age. Two children
were able to enter a normal nursery school
directly from the preschool nursery.
Two children who were, at first, thought
to have cerebral palsy were, by subsequent
observation during their stay at the
pre-school nursery school diagnosed as mentally
retarded. They were then transferred to a
special school for retarded children, thus
avoiding further long periods of physical
and occupational therapy. (Table III lists
the eventual placement of these children.)
Benefit to the Parent
At the end of the first 2 years of operation
of the school, 14 parents whose children had
been in the school volunteered to answer a
questionnaire, which they returned
anony-mously. All but one of the parents stated
that they had markedly benefitted from
their experiences with the cooperative
pre-school nursery. Most of them commented
that their relationship with their child had
improved considerably. They were able to
accept the child’s limitations and be more
relaxed, and the husband and wife were
able to discuss their problems objectively.
Mothers were practically unanimous in their
approval of the parent participation, the
group therapy and the parent education
ses-sions. Parents, by closely observing their
own
child in the school, could begin to realize the
child’s limitations. This accurate observation
TABLE III
EVENTUAL PLACEMENT OF CHIIDnFN ENROLLED IN
THE PRESCHOOL NURSERY PROGRAM
.. .
Facrlthe. Children (no.)
Sonoma State Hospital for custodial care 4
Applied to Sonoma State Hospital, on wait-ing list
Home I
El Portal del Sol School (public Cerebral
Palsy Nursery School) 9
Nursery school for normal children 2
School for retarded children (Children’s Health Home, San Mateo Co.) 2 Moved out of county-placed in another
pre-school nursery program 3
Died 1
Re-enrolled in Cerebral Palsy Preschool Nursery for 1960-1961 6
Total 30
of the whole problem.”
Our observations of this group of parents
has been that they have a greatly
dimin-ished anxiety about their child entering into
the more intensive treatment program at the
regular cerebral-palsy school. Six parents
were able to recognize and act on the fact
that their child was not amenable to any
specific treatment and, consequently,
ap-plied for custodial care of the child. It is
evident now that not all of the children in
the program will become college graduates.
It is most important, therefore, that those
whose goals will be a sheltered workshop or
vocational training be directed early toward
this end. The program has enabled parents
to prepare such limited goals.
We observed a notable decrease in the
usual sublimating activities of parents, such
as searching for miracle drugs, various
fad-like treatments, diets and shopping about
for doctors and institutions who would give
them a better prognosis. When this group
of parents was contrasted with a rather
large group of parents in the regular public
cerebral-palsy school who had not had the
benefit of detailed parent education and
group therapy, it was evident that the
pre-school program with parent co-operation
has been a worthwhile activity.
To illustrate the misdirection of a
place-ment problem, the history of a patient is
presented.
CASE 1: A 12-year-old boy had cerebral
palsy, severe athetosis and mental
retarda-tion. There was a history of breech birth
with prolonged anoxia.
When the child was aged 2 years, the
diagnosis was made at a University Medical
Center. For
two
subsequent years the childattended the El Portal del Sol School in San
Mateo County for occupational and
physi-cal therapy, without noticeable
improve-ment. At the age of 4 years he was admitted
to the State Residential School for Cerebral
Palsy for 1 year, with no improvement
noted. Following this he was admitted to a
private cerebral-palsy school in a distant
community, he remained there for 2 years.
During this time the parents were
finan-cially unable to support him at the private
school, and so the local United Cerebral
Palsy Association paid for a portion of this
private schooling. No real improvement was
noted. After 2 years the physician at the
school informed the mother that he was not
improving and advised withdrawal, but he
said it was the child’s poor nutritional
con-dition that prevented him from learning.
A number of psychometric examinations
revealed that at all ages he was severely
re-tarded. At the age of 12 the psychometric
examination indicated that he was
function-ing at the level of a 6-month-old infant. He
was unable to feed or dress himself and was
not toilet-trained. He could not speak, and
his sole method of existence was in a wheel
chair, which he could not motivate. In the
past, institutional care had been repeatedly
suggested. However, there was no sustained
professional counseling. The mother became
mentally ill for a number of years and was
under psychiatric care. Several of the
teach-ers and doctors had repeatedly remarked
that the child was “happy” and had a
“mar-velous smile.” These statements reinforced
the mother’s opinion that he was really quite
all right and, given enough time and
treat-ment, he would improve.
Meanwhile, they continued to ask for and
1030 CEREBRAL PALSY
date the following have contributed to this
child’s care: The University of California
Medical Center, the Crippled Children’s
Service, the El Portal del Sol School, a
pri-vate cerebral palsy school and the United
Cerebral Palsy Association. Each contact
has resulted in a considerable expenditure
of money. This case illustrates the long
his-tory of emotional and financial strain on a
well-meaning but misdirected family.
COMMENT: Much of this prolonged stress
can be avoided by early diagnosis,
treat-ment and intensive counseling in facing up
to the situation. In a study concerning
re-tarded children, a common complaint of
parents was the tendency of professional
people to “evade the issue.” We have found
no substitute for analyzing the child’s
prob-1cm objectively and then explaining it to
the parents in a gentle and charitable, but
very clear, manner.
Even when the issue is directly faced by
the physician and technical staff, however,
it is unrealistic to expect a quick and easy
resolution of the problem on the part of the
parents. Physicians often do not expect the
patient or parent to “do something” or
change their ways immediately when a
psy-chosomatic patient shows no organic basis
for a set of physical symptoms, or when an
ulcer patient is told his is an emotionally
in-duced condition and he must relax.
Experi-ence has shown that the emotional problems
stirring up the trouble are not solved by a
diagnostic statement and good advice.
Parents who have children who are
de-fective physically and/or mentally have just
as much blocking to “doing something about
it” as do patients with psychosomatic
ill-nesses. The parents’ ego is mortally
at-tacked. To the observer, clinically detached,
it might seem best to institutionalize the
child if he is seriously mentally retarded, or
to settle for minimal living accomplishments
if the child is severely physicially
handi-capped. To the parent, however, it means a
number of unpleasant, intolerable
self-ad-missions-the admission that one has bred
an imperfect child, so “What is wrong with
us, what have we done?”; the admission that
one is helpless to do anything about the
sit-uation and no one can give the hoped-for
reassurance; and the admission that one’s
life is going to be constrained and delimited
drastically by the child’s inabilities. Parents
lose financial security, physical freedom and
mental comfort and contentment. The
cx-citement and joy of seeing a child grow up
to establish an independent life,
grandchil-dren, etc., is now out of the question. It is
asking a great deal to expect parents to
quickly resolve these blows and become
“reasonable.”
Necessary, therefore, are many hours of
sympathetic supportive listening to parents,
mentally exploring with them all the
rami-fications of the problem and their own
feel-ings. It means bringing them “down to
earth” when they try to fool themselves;
listening with acceptance and without
judg-ing when they rage at fate, the neighbOrs,
the doctors, the schools, the community and
the child himself. It is not usual for
physi-cians, therapists or teachers to have the time
or training for this necessary counseling.
Physicians, and in particular, pediatricians,
who see this type of patient might find it
profitable to devote extra time and thought
(and possibly special training) in parent
counseling.
The graduate psychiatric social worker is
specially trained for such counseling and,
therefore, is an important member of the
nursery school staff. In addition, the
psy-chiatric social worker’s role can encompass
the following : co-ordinating the various
spe-cialists of the school staff, cueing-in
thera-pists as to parents’ blocking points, checking
psychological reports, referring patients
back to the doctor for diagnostic and
treat-ment information and informing patients of
community resources.
An example of how a child was managed
in the San Mateo County Pre-School
Nur-sery illustrates the importance of good
par-ent counseling.
CASE 2: A 4-year-old boy had cerebral
palse with athetosis and mental retardation.
At the age of 3 years this child was given a
cerebral palsy and possible retardation. The
parents were referred to the nursery school.
The mother was unable to accept the
possi-bility of mental retardation, was doubtful
that the child really had cerebral palsy
and felt he would probably grow out of his
tremors. She was baffled about the problem
and thought of going to other centers for
examinations. She came regularly and
co-operated throughout the year of observation
and treatment given her child. Since it was
difficult to assess what proportion of his
troubles was cerebral palsy, what was
mental retardation and what was emotional disturbance, he presented a very complex
problem. The child was unusually
hand-some, but he did not speak and occasionally
screamed without apparent cause. He
achieved a sort of rocking stance and
mini-mum grasp but often seemed detached and
withdrawn.
This family had repeated meetings with
the nursery-school staff and was kept
ad-vised of the difficulties in assessment. Severe
marital problems were present and a divorce
was imminent. The mother herself had
seri-ous emotional problems. She had been
de-pressed and withdrawn, with few social
con-tacts. In comparing the child’s abilities with
other children more physically involved, it
became clearer to the parents that mental
retardation was the bigger handicap. The
mother became much less anxious and
guilt-ridden through her group therapy
partici-pation, gradually achieving a more outgoing
personality. Individual sessions with the
psychiatric social worker were focussed on
the marital problems, with considerable
improvement. The final family decision was
to apply for institutionalization of the child,
feeling that this was best for the palsied
child, their normal children and themselves.
This family might have gone from agency
to agency as a means of evading the full
realization of the problem and, as is often
seen, could have focussed on the child’s
problems so that the marital difficulties did
not become overwhelming. Since they were
a low-income family, this searching would
all have had to be done through community
agencies. It is difficult to say what this
family would have cost the community had
the child achieved the age of 12 years, as in
Case 1, without some consistent approach
as described above. Probably the cost would
have equalled, or exceeded, that of Case 1.
(Monetarily, it cost the United Cerebral
Palsy Association $1,100 to obtain this
re-suit.) The cost to the parents emotionally
has been great, but it appears that the
emo-tional toll would have been heavier had the
process gone on for several years.
Benefit to the Community
When one considers that the public
cere-bral-palsy school (El Portal del Sol) in San
Mateo, California, costs about $3,500 per
child per year, it is important that the
se-verely involved, uneducable children are
not admitted for a so-called “trial” which
often extends from 1 to 10 years. The seven
children from our preschool nursery who
were directed to custodial care, and the two
children who were directed to a normal
nursery school, represent a saving to the
community and the state of approximately
$40,000 for 1 year alone. This money can
then be effectively spent for the treatable
and educable children who need intensive
care.
In addition to the direct economy, there
is the indirect economy obviating the
pre-cipitous increase in the physical therapy,
occupational therapy and teaching staff of
the regular school to handle the children
treated during these so-called “trial
pe-nods.” Therapists and teachers can then
direct their efforts and spend more time
with the treatable children. It is difficult to
calculate the indirect saving of money, time
and effort, when as a result of this program
the various agencies and individuals of the
community were not besieged by emotional
parents. Just one family that is distraught
and seeking a magic cure can require
count-less man hours of professional and
nonpro-fessional time.
The figures in Table III may be of interest
to those who have had occasion to
1032
speaking, such recommendations are
re-jected by parents, and few severely retarded
children with cerebral palsy are entered into
institutions until the situation becomes less
unbearable. Considering reports that 60 to
75% of these children are retarded and 33
to 50% are severely retarded, it is interesting
that 8 of 30 children were referred by their
parents for further care as mentally
re-6 This is a significantly higher
per-centage (37%) of appropriate placement than
is usually experienced by the authors.
SUMMARY
As a result of a 4-year experience with a
preschool nursery program for children with
cerebral palsy, the following conclusions
have been reached.
The program should include parent
par-ticipation, parent education, group
psycho-therapy for parents and individual
counsel-ing.
The services of a nursery school director,
physical therapist, occupational therapist,
speech therapist and graduate psychiatric
social worker and a physician trained in
cerebral palsy are essential to insure
maxi-mum success in treatment, delineating
prog-nosis and directing the parents and the
chil-dren toward the future.
The program, as described, has
elimi-nated not only a great deal of financial
waste but emotional waste as well.
Con-sidering the continuous searching of parents
for a cure as a result of misleading and
in-complete medical information, coupled with
virtually no counseling, the emotional waste
for such parents is obvious. No substitute
has been found for facing up to and
under-standing the problem objectively at an early
age.
REFERENCES
1. Killilea, M. L. : Karen. New York, Prentice-Hall, 1952.
2. Bobath, K., and Bobath, B. : Spastic paralysis:
treatment by the use of reflex-inhibition. Brit.
J. Phys. Med., 13:121, 1950.
3. Schulman, J. L., and Stem, S.: Parents’ estimate of the intelligence of retarded children. Amer.
J. Ment. Defic., 68:696, 1959.
4. Waskowitz, C. H. : The parents of retarded chil-dren speak for themselves. J. Pediat., 54:319,
1959.
5. Hohman, L. : Intelligence levels in cerebral
palsied children. Amer. J. Phys. Med., 32:282,
1953.
6. Martin, J. K. : Cerebral palsy in Manitoba.
